I’m sure you can guess what my answer to that question is. My post this month at Autism Women’s Network, Understanding the Gender Gap: Autistic Women and Girls, outlines some key ways in which autistic girls and women often don’t fit the traditional diagnostic models for autism and Asperger’s syndrome. In part, this is because the traditional models were developed primarily by observing autistic boys.
For anyone who reads the article, I have a few questions. If you identify as female, do you think the traits I listed in the article fit you? Do you think including traits like that in the diagnostic model would make it easier for someone like yourself to be diagnosed? If you identify as male (or not female), do you feel like any of the traits also fit you?
I’m asking that last question because it also occurred to me that part of the problem with applying the current diagnostic model to adult women is that it was developed based on autistic children. When I started researching Asperger’s syndrome, I kept coming across information aimed at screening children and had trouble seeing myself in the most commonly mentioned traits. By the time we reach adulthood, we’ve often made a lot of adaptations that conceal our autistic traits. So I suspect that some of the social traits in particular might also apply to many adults, regardless of gender. I’m also curious what other traits you think should be part of the diagnostic criteria or how the diagnostic criteria could be modified to be more inclusive.
And finally, I’m taking next week off to go visit my daughter. Enjoy the rest of November and if you celebrate Thanksgiving, have a great one!
159 thoughts on “Do We Need a Female Diagnostic Model for Autism?”
(This is N, btw)
First off, really great article, thank you! I think you raise a lot of valid points, and I’m glad this issue is being looked at more in depth. I’m female, and to answer your question, I’ll go through each section:
Mine weren’t/aren’t as “weird” as outhouses, but most of them certainly weren’t anything near typical girl interests. Some of mine (past and present) include: prehistoric life, genetics, evolution, certain video games, dog and cat breeds, ancient Egypt, deep sea life, LGTBQ rights (even though I’m straight). I have a few that are more typical too: Beanie Babies, and nutrition. I do agree with you on how the more typical ones present though, they are more intense. All my Beanie Babies were cataloged and I loved sorting them, and I remember the nutrition facts for my favorite foods (that one’s useful).
Yes, yes, yes. This whole paragraph fits me very well, including the acting out of other scripts (movies for me, usually).
Again, yes. I could speak in full sentences (like “Mommy, can I please have some juice”) before the age of 2. I could read before I went to kindergarten, and by the time I was 12, I could read college-level books (Frank Herbert’s Dune series, specifically).
Faking Through Imitation:
I can do that now, fairly well if I put a lot of energy into it. I’ve learned to imitate people I know in certain situations. As a kid though, I was often non-functionally shy – I couldn’t even respond sometimes if someone asked me something.
As a kid, I did have one or two intense friendships at a time. As an adult, I find friendships too complicated, and wouldn’t know how to keep them even if I was interested. Overall, my friend track record has been riddled with issues and I’ve spent considerable time without friends.
This one is not me at all. I really don’t enjoy socializing for it’s own sake. While there are a few individuals I like being around, it is their company I enjoy rather than the socializing itself. Even if I’m with someone I like, the “socializing structure” that often happens bothers me.
Invisible Social Difficulties:
Yes and no. As an adult, I can fake and script my way through short interactions (like buying something at a store), however, my difficulties do show up during longer interactions. I also have a very difficult time managing and maintaining relationships, and it shows.
Yes. I have experienced depression, anxiety, and eating/body image issues. I’ve never had professional help for any of those, so they have not been diagnosed.
Sorry if this is too long! But I thought it would be most helpful to be specific. And I do really think that having a diagnostic model for girls (or just incorporating these traits into the model, since gender is fluid) would be extremely helpful, and would make me feel more comfortable about getting diagnosed.
You’re traveling in disguise! Love the user name.
We have a lot in common. Thank you for going into so much detail. I had a mix of typical and atypical interests, most of which I think were put down to me being a “tomboy” for a lot of years. I also don’t see myself in the “enjoy socializing” or “faking through imitation” as much as the literature I read seemed to imply I should. 🙂 But much of the rest fits me pretty well.
Yay! Thank you, I’m so glad you like the name! It was a challenge to come up with a name for my new blog, but I think it fits quite well.
And yes, I was also considered a tomboy growing up (despite the fact that I really liked fashion/beauty in an artistic sense). I was really into video games and things like Pokemon. When I played online games as a teenager and adult, people would tell me “you can’t be a girl, you’re actually good at this game!”
I wonder if the “faking through imitation” and “enjoying socializing” are something that happens when the person wants to interact, but doesn’t know how? I think my lack of interest in socializing made me less likely to be really “good” at faking it? My social difficulties are pretty obvious…
i think you’re probably right about “wants to interact but doesn’t know how” being a factor in whether someone picks up social skills through imitation. That’s a great point.
And my daughter loved Pokemon too so we used to play together. 🙂
Given that autistic girls get diagnosed later and almost always have to have more severe than average autism to get diagnosed at all, definitely.
I’ve read articles that say “Girls don’t get autism as often as boys, but when they do, it tends to be worse,” and I’m sitting here going, “That’s a red flag that the diagnostic criteria don’t handle girls’ autism as well as boys’.”
I’m not comparing autism and heart attacks in terms of severity, but just in terms of the same phenomenon is taking place here and it’s the first example that comes to mind, just as a disclaimer. They used to say that about women and heart attacks. “Women don’t get heart attacks as often as men, but when they do, their heart attacks tend to be more deadly.”
When, in reality, further research showed that the symptoms of heart attack were different in women. It wasn’t that women were having more severe heart attacks than men, it was that womens’ heart attacks weren’t being recognized as heart attacks until irreversible heart damage had occurred, giving women a higher mortality rate. And with greater frequency than in men, women’s heart attacks weren’t recognized at all, putting them at greater risk of a fatal heart attack in the future than a man, as the man would be more likely to get treatment, monitoring, and lifestyle intervention. Now that they know that’s why women tend to die from heart attacks more often than men when they get heart attacks, they’ve adjusted the symptom profile they give to ER staff so they can better recognize heart attack symptoms in women.
There’s a big issue in medicine in general with doing the initial studies on a thing in men only and then assuming what holds true for men will hold true for women. This is also true across other axes of privilege – they tend to research on white people and assume it’ll hold for PoC (case in point: certain side effects classed as “very rare” actually aren’t rare at all if you’re of a certain ethnic background, but the “very rare” classification without research ahead of time into how ethnicity plays into side effect frequency can throw some people’s doctors off), they tend to research on CAB people and assume it’ll hold true for the disabled and chronically ill (drug side effects come to mind here, again – like, for example, it was only recently that they discovered that the side effect of bronchospasm from NSAIDs is actually fairly common if you’re asthmatic to begin with, and that asthmatics also tend to get a side-effect that’s unique to them in terms of loss of asthma control), they tend to research on the highly educated and assume it’ll hold true for those who barely scraped through or even dropped out of high school (psych studies, anyone?), and so on and so forth.
And it’s a bit of a pet peeve of mine, because over and over and over and over again they discover that, fancy that, women aren’t just men with boobs. And over and over and over and over again they brush off the suggestion that maybe women aren’t just men with boobs until someone (usually a woman affected by the issue in question who is high up enough in academia to lead her own team also happens to have expert credentials in the field – probability and prejudice means this often takes quite a while) finally decides to take a look at it and produces evidence and then everyone in the field goes, “Fancy that, women aren’t just men with boobs!”
I think that one of the best signs that feminism will have finally done its job will be when science assumes from the get-go that women aren’t just men with boobs and studies them, specifically, as they study men, specifically, rather than just studying men only and assuming the results apply to women, too, because genderblind sexism is mistakenly thought of as equality. And the same is true of racial equality movements along the race axis re colorblind racism, and of disability rights movements along the ableism axis, and so on and so forth.
Erm. Sorry for the rant.
I just realized my problem with a lot of autism research re: gender. They see Observation, and then they repeat the Observation as if it’s a conclusion and forget to ask “Why are we seeing Observation?” Science is supposed to try to provide answers, and “Because we see Observation,” isn’t an answer.
There’s a gender disparity of 4:1 in diagnosis. Okay. That’s a good observation to start the scientific method with. Now, why? “Because there’s a well established gender disparity in the literature” isn’t an answer. It’s just a re-phrase of your initial observation. So, I ask again, why is there such a severe gender disparity?
Is autism associated with X-linked genetic mutations? That’s an answer. Are the diagnostic criteria gender biased? That’s an answer. Is societal sexism at play, where less adept girls are encouraged to socialize more than less adept boys, and so fewer girls stay behind in social stuff than boys? That’s an answer. Is it some combination of the previous? That’s a more likely answer, from what I’d guess. What is it in reality? I have no idea, because until the past few years, the field has been content to stop at “there’s a gender disparity” and not ask why.
But they need to investigate these things. They can’t just stand back and say, “Because it is!” “Because it is” isn’t an answer, and it isn’t good science.
I strongly feel that diagnostic bias or underdiagnosis is a huge part of the reason for the gender disparity in diagnosis (not in prevalence, which I think is actually much smaller than the stated ratios). I’ve written a long post on gender that addresses some of what you mention here. I’m looking forward to your take on it when I post it (after the holidays).
So do I. I’m not sure if it accounts for all of it, but certainly some.
I so agree with the points made in your article regarding women/girls and autism. I was diagnosed earlier this year, before I turned 50. I was told about your writing by the person who evaluated me and find your writing very insightful.
I connected with many of the traits you mentioned in your article. I think I have a pretty active imagination, I enjoy reading fiction and seeing movies. Though I feel that I often communicate better in writing, I can be very verbal and was quite verbal as a child. I feel that I did adapt socially and that may be one reason why I was not diagnosed till recently. I have co-existing conditions such as eating disorders (various ones since my teenage years) and cutting (self-mutilation). I can be social, but it does come at a cost and have to retreat or take long naps to recover. I have some female friends, but have often had more male friends. Thank you for your insights. I look forward to reading your blog.
Thank you for letting me know that you’re finding the blog helpful. It feels good to hear that professionals are recommending the writing of autistic adults to newly diagnosed individuals. 🙂 It sounds like just about all of the traits on the list fit you and obviously the person who evaluated you was aware of how autistic women can present differently. Congratulations on your diagnosis and welcome to the community!
I think this comment was intended for the OP? That said, congratulations on your diagnosis!
Self-injury is something I’m very familiar with. I actually thought I’d “gotten over” after I left teenagerdom, but really, I got rid of some of the more harmful forms but still do the less harmful ones. I just didn’t think of them as self-injury.
It wouldn’t surprise me if a lot of people who engage in self-injury are autistic (though, I admittedly don’t have any science to back me up on that postulation). Pretty much every autistic person I know does it to some degree for sensory regulation or meltdown avoidance. For me, it’s a lot of sensory self-regulation in overload-heavy environments.
Oh, and to answer the initial question (sorry to derail myself with a rant), here goes:
Special interests: While not as weird as outhouses, my special interests were and remain either gender-neutral or stereotypically male. Books, weather, etymology and vocabulary, chemistry, martial arts, math, and more recently, social justice. More of them code male than not, and none are stereotypically feminine.
Imagination: Sort of? I was late in developing it, but once I did, I had a fairly healthy nonspontaneous imagination. I still don’t really have the hang of spontaneous imagination, though.
Verbal/hyperlexic: Yes and yes. I was completely unaware why using the word “defenestrate” to describe the events of a cartoon irritated my age-peers, though (that said: Defenestrate was and remains my favorite word. Defenestrate. Such a good word. Erm. Moving on.).
Imitation: I made up conversation flow charts and memorized them. Pretty sure I have this one covered in spades.
Friends: Usually one gateway friend, often though not always of opposite gender. As an adult, I can handle more meatspace friends – more meaning two.
Enjoy socializing: Under a certain set of conditions, yes. The activity must be 1, structured, 2, small (ideally <7 people total), and 3, relatively quiet. As one becomes less satisfied, the others increase in importance – I can handle a complete lack of structure if I'm 1-on-1, for example.
Hard to spot social difficulties: Yes. Can't relate to age-peers, avoid stuff I'm bad at, more comfortable in stereotypically male environments, etc. Other thing: very very bad at socializing over something that isn't a special interest. Socialize about martial arts? I'm with you all the way. Socialize over shopping? I'm lost, and worse, I might actually literally get lost by spotting something and examining it and then when I turn around, you’re gone.
Coexisting conditions: I had a phobia (needles), I had so-bad-even-I-couldn’t-miss-it depression as a kid, and I’m not sure if I have a thing as an adult because I’m bad at emotions.
“Socialize about martial arts? I’m with you all the way. Socialize over shopping? I’m lost, and worse, I might actually literally get lost by spotting something and examining it and then when I turn around, you’re gone.”
This is so me. Once my daughter was old enough to shop alone, she would tell me to just give her money rather than taking her shopping for clothes because it was too much like babysitting me and she couldn’t concentrate on picking out clothes. 🙂
My parents lost me in the mall once because I saw a book store display and stopped to look at it. They tracked me down over an hour later, and I was still looking at books. I didn’t even know that they were gone at all, let alone for over an hour.
(Books are my earliest and my most enduring special interest. Can you tell?)
Just a little 🙂
Happened to me too. And I was all confused that my parents thought I was the one who got lost. Hey, THEY walked away! 😉
Eight years later, I would be offered a job at that bookstore because I was there a lot and did the clerks’ job better than the clerks did (I knew exactly where every book in the store was and whether or not they had something in stock or not, I would resort the shelves when I was there browsing for what was new, and if someone was looking for something, I’d give them directions. Other customers thought I was the owner’s kid! Nope, just a kid who really likes books). I turned it down because I’d just accepted my first-ever part-time job and somewhere I’d picked up the social rule of “don’t turn down a job you’ve already accepted”, which I’m still kicking myself for – a book store job would have been so much better a fit than the fast food job I ended up working.
🙂 I do that in the library too, put books right when they’re placed wrong
I have to resist the urge to do that at my uni – they use reshelving stats to keep track of which books are used, so I instead stack them by call number in the resorting baskets.
Imitation: Also, maybe people should look into mimicking books, comics and TV shows.
Cuz I did that a lot. Sometimes with mixed results (contrary to how it’s presented in that YA book I read, quoting definitions at people from the dictionary is not typically seen as endearingly quirky. It’s seen as pretentious or just plain strange. See also: Repeating 70s slang as a 90s kid when I was reading a lot of books written in the 70s.
Yesterday we took a long drive with our dog and every time I put her back in the car and fastened her safety harness I said “Click it or Ticket!” because I read it on so many roadsigns and billboards during the drive.
… That’s echolalia, too?
I do it a lot more than I thought I did, then. XD
So what should we call it if I’m quoting someone else’s echolalia as my own echolalia? Because I tend to have random moments of “You asked for it, you got it… Toyota!” (From the movie Forget Paris). 😛
I call it my text-to-speech echolalia 🙂
Excellent rant! I actually compared autism and heart attacks recently when having this conversation with someone because of the parallels in the issues women face. So yeah, totally get what you’re saying. Also “women are just men with boobs” needs to be a t-shirt or bumper sticker.
The people leading the research into how girls on the spectrum differ are, not surprisingly, mostly women, although not openly autistic women in most cases (not that they’re necessarily autistic at all, but they could be).
Thank you. Also, yes, not surprised at all that most people thinking ‘how are women different?’ are women. It’s just like I wouldn’t be surprised if people studying racial differences in diagnosis/outcomes are PoC.
Totally justified rant. As I said before on Twitter: science people should just read this blog already, it would help a lot 🙂
I would say that some of the traits fit me, although my interests were generally more those associated with boys.
I think I was lucky in seeing someone who specialised in women and girls, it would probably be useful to widen the diagnostic criteria so that non-specialists can also diagnose correctly, and hopefully reduce our waiting times. I did have to travel a fair distance for the diagnosis.
There is also the aspect that there is less aimed at adults of either sex, as though autistic children didn’t become autistic adults. Sometimes we don’t have the relationship with our parents where we can glean the information about our very early lives.
It’s interesting how many of us have special interests that are more typically male interests.
The lack of separately defined adult criteria does feel like a big problem. I wonder how many adults suspect they might be autistic and then completely dismiss the possibility when looking at the popular examples of traits, which are mostly described in terms of how children present. I know I nearly did.
I think that at the core of the issue is a diagnosis based on degree of impairment instead of significant differences in thought processes and sensory perception, which are common to all autistic people regardless of the effective impairment. It is obvious that the coverage of medical and related expenses needs to be justified by a relevant degree of impairment, but not all of us (especially adults) seek diagnosis for that reason. If one has learned to fake it over time and had less trouble as a child because of the characteristics you listed (which mostly apply to me as well – except that I’m more logical than creative), there are chances that their condition won’t be recognized.
That’s a good point. The presence of a significant degree of impairment is now hardcoded into the diagnostic criteria and that could cause adults with good adaptive skills to be overlooked.
Glad to see this discussion of the diagnostic rates of women with autism continue. At last reading, the statistics for diagnostic rates in men compared to women were 4:1. So as I ponder your list, these things came to mind:
Special interests: Fascination with new religious movements as a 7th grader, then psychology throughout high school and into college; incredibly intricate filing system for internet articles
Active imagination: Escaped into Madeleine L’Engle’s books throughout childhood and adolescence; Wrinkle in Time is still my go-to book when I’m feeling overwhelmed
More verbal: I remember using a lot of large words in elementary school and a peer mocking me for that. High verbal, ordinary performance IQ in gifted testing. Mom says I gestured toward things then leaped to full sentences.
Enjoy socializing: I’m an introvert who likes people’s stories, so while I enjoy being around people, I’m eventually looking for an escape during social outings (cuppa tea and book stowed in bag).
Has friends: I have intense female friendships that work well 1:1 and friends in groups centered around a common interest (literary org in college and womyn’s writing circle now).
Comorbid conditions: Generalized anxiety disorder
I think 4:1 or 5:1 is what’s commonly cited, yes.
That’s really interesting about the drastic leap in your language development. I remember my mom making a big deal of me spontaneously reading an exit sign in a store. It was before I started kindergarten and I have no idea how I learned to read. It seems like I just always could, which of course can’t be true.
Same here. I don’t remember not being able to read. My parents say they’re pretty sure I learned to read simple stuff before I could talk. And, as askanaspergirl, I basically went from babbling to full sentences.
I had a similar leap for physical development: I didn’t really toddle. I went straight from crawling to walking. Though, I did make the leap over a year late. Physical skills for me develop in fits and starts, with long periods of no apparent progress, and then I skip two or three milestones entirely after an aha moment. But it pretty much always takes me longer to pick something up than anyone else I know if it’s a physical skill, and often I’ll develop ways of using skills I’m already good at instead of learning something new.
” I remember using a lot of large words in elementary school and a peer mocking me for that”
I was always using proverbs, saying, but also slogans from commercials. Mocked by peers, adults seemed to think it was funny, but none of it can be called typical.
I hope you have a good week away with your daughter.
Thank you! I’m very much looking forward to it.
I feel that my symptoms fit the diagnostic criteria in the new DSM-5 very well, but I did have to bring up a lot of specific examples and explain why I thought they fit, in order to get diagnosed. So it’s not so much the criteria that filter out girls and women, it’s the bias of the professionals involved in the process, from first referral up to final diagnosis. “Painfully shy to the point of mutism above the age of 5” is a perfect example of a “persistent deficit in social communication and social interaction”, but every professional I’ve talked to simply couldn’t come up with that example on their own. I had to point it out to them. I think shy and withdrawn boys suffer from that bias as well.
So I think what you’re saying is that while the criteria fit you well, the way they fit is in some cases atypical (at least in the view of the clinicians). I think shy and withdrawn boys are likely missed more often than we might realize too. I have read that shy boys raise a red flag because shyness is a less socially acceptable trait in boys than in girls, but I have no idea how that plays out in the real world.
That’s a very good point. Shyness is definitely not punished or criticised as much in girls. I think a lot of our learned behaviours over the years would probably fall back to a reward/punishment model, which is basically what ABA does as well. So yeah, it is effective, in that it allows us to go unnoticed, but the emotional cost is immense.
I say bring it on! These trends/observations read like my biography, they’re so spot on it’s scary. Great post, thanks for sharing it 🙂 JD
Thank you! Fortunately there are some researchers pushing to make criteria like these part of the clinical norm.
Your whole article fit me perfectly! My psychologist recently diagnosed me with Asperger’s/ASD, and reading that article felt like someone had written a description of me. I definitely think that the female diagnostic criteria would be extremely helpful.
It’s great to hear that you feel like the criteria fit you. Hopefully as more and more women get diagnosed, it will become obvious that we’re a bit different from the traditional model.
The main issue really is, that in reality, all mental health diagnostic models are pretty poor and have little effect on the treatment recieved…..
Personally I’ve not noticed much difference in the core traits between women aspies and male aspes, and I know a hell of a lot of female aspies, many of whom just can’t be bothered with the medical profession in the first place anyhow…. which would explain a good part of the ‘diagnostics’ gap.
RDOS seems to be one of the better diagnostics tools as neurological development difference can result in alternative interpretations of things like the AQ test… my walking on tip toes has evolved to the point of tipping taxi drivers and giving general advise and ‘tips’ as I certainly don’t like plain old boring same old same old day in day out once a month usual sex.
Current research has also been focused on things like the ‘theory of mind’ similarities between schizophrenia spectrum and autistic spectrum and there’s also a good amount of child hood and other trauma involved in bi-polar and BPD, one of the only real solid and valid pieces of diagnostics is the low co-morbidity between ASD and ASPD.
I’ve seen quite a few women mention that they haven’t sought a diagnosis because they don’t trust the medical system, etc. So that could be a big contributing factor for sure.
There is an initiative called ESSENCE that looks at “red flag” traits in early childhood, with an emphasis on identifying at risk kids over giving them a differential diagnosis. My understanding is that the amount of overlap between ASD, ADHD, Tourette’s, OCD, etc. makes them hard to tell apart early in life and some researchers suspect that a lot of kids are getting diagnosed based more on which kind of specialist they see first. So a two year old whose parents take him to an ADHD specialist might get an ADHD diagnosis while another two year old with similar traits who sees an autism specialist first will get an autism diagnosis. I’m probably botching part of that explanation by condensing it so much but if you google ESSENCE + autism and ADHD, you’ll find more accurate info.
I hate the medical system in general and have a huge distrust with it…and avoid it as much as possible…thus my big push into naturopaths, massage, accupressure, reiki and therapists instead…they seem to be a tad less power hungry and in the box thinkers.
bi-polar and ADHD are very difficult to tell apart, that’s one of the current more serious issues primarily because the medication given to people diagnosed with ADHD is very nasty, often neuroleptic (that is anti-psychotic) and those drugs reduce the seizure threshold, neuroleptic littrally means ‘brain seize’. When this is compounded with the high incidence of epilepsy in people on the autistic spectrum (and with the high ADHD comorbitity) that’s a recipie for disaster.
More over I’ve found the effects of neuroleptics to be such that they reduce the brains ability to fucntion correctly to such a point that you are unable to notice, as many people say ‘turned into a zombi’ totally blocking all emotion, only to have the emotions flood back again often with withdrawal induced psychosis (neuroleptic induced dopamine supersensitivity), which like all withdrawl (and trauma) can last for upto 3 years before you’re all clear.
Treatment is by far a bigger issue than diagnosis!
Thank you for this interesting article. I agree with your comments. Special interests omg yes quite intense at times. I learnt over time that it is not always wise to share your interests with others. So also yes I have had to learn socially appropriate behaviours. I still feel very obsessed by my interests. Best way of describing how this feels is a tugging sensation. Sometimes its necessary to surpress it but then I become anxious. Then yes because I live in a constantly anxious state I have been diagnosed with GAD. Having people that understand helps, so yes I agree again I have one close friend and lots of other acquaintances..
It sounds like quite a few of the traits fit you. I’ve always found that having one or two close friends is just right. And I guess acquaintances would be the rest of the people who I encounter as part of activities but don’t really see outside of our shared interest.
Increasingly, as a diagnosed aspie male I get the feeling that my
particular autistic traits are more similar to those of females.
Special interests: University stuff (chemistry, pharmacology,
medicine, computer science, music, linguistics). Was reading
introductory chemistry at a very young age,
Active imagination: Not so much anymore, but this used to be very
true, in the “creative” sense of imagination. On the other hand, I’ve
never had problems understanding metaphor… quite the contrary.
Hyperlexic, verbal: Yes to both! Quite a feat, considering I went to
kindergarten with (almost exclusively) nonverbals.
Imitation: When meeting a new group of people, I tend to pick up words
or phrases which I then overuse.
Friendship model: Absolutely… few friends, in early childhood often
much younger ones. Yes, and also some who offer (a little) help with
Enjoy socializing: No, that’s not me. But one female commenter says so
Social difficulties difficult to spot: Oh yes, I hate phones for
several reasons. Use them rarely. But it’s not exactly an item in the
Coexisting conditions: Do physical disabilities count? Yes, I’ve got
I’m being told/threatened by one friend (works with autistic
individuals, but is not a diagnostician) that I would not qualify for
a diagnosis today, which may be true. But the problem is that autistic
difficulties can manifest in many different ways that diagnostic
interviews can not detect without a lot of cooperation and preparation
on the part of the interviewee. The diagnostic situation can only
capture so much… I believe we need to somehow reform it to
investigate a greater variety of situations. How that can be done in
practive is another matter.
For the same reasons, I have a problem with certain aspies who, when
confronted by ignorant people with the “you can’t possibly be
autistic” line, appeal to authority to justify the label, and advise
against using the various self-tests around the internet. There are
problems with both.
Thank you for answering – I was hoping that some male commenters would chime in. I’ve seen other men who those criteria apply to as well, so perhaps being an adult contributes to at least some of them. I think many clinicians who diagnose adults have a better understanding of how autism looks in adults and how that varies from childhood manifestations. Not all do, but I’ve heard quite a few positive stories. Hopefully, as you said, people will continue to more widely recognize the variation in how autistic people experience the diagnostic traits.
You said, “I’m being told/threatened by one friend (works with autistic individuals, but is not a diagnostician) that I would not qualify for a diagnosis today, which may be true.”
I’m pushing 49 years of age. I’ve never had any diagnoses. All I’ve ever done is the online quizzes… that and reflect on the things in my life. I was happy to self diagnose two years ago. It helped me understand that some of my proclivities don’t need to be explained. There is absolutely no point for me to get a professional diagnoses. First, I don’t care. My life wouldn’t change an iota. Second, if there’s no blood test, it’s subjective. Like the difference between competitive skating and a game with a definite score.
In the end, diagnoses notwithstanding, a person needs to find a way to get along in life. With him/herself, with others, with their community… for those of us with life long issues with social awkwardness a diagnosis (even a self diagnosis), if made known, can help others extend a bit more tolerance to our ‘oopsie’ moments.
I agree, Joseph, and I also think quite a few of the issues can get easier for many of us as we get older. We’ve had years to get used to the terms of our lives – in that there are some things we can work to improve and those we just have to accept. I think for me it was good I wasn’t diagnosed in childhood – it meant I had no “label” that some people would have used to limit me (even more than my issues already did). I was limited enough being a ‘girl’, sadly, and struggled against that.
Male female diagnosis dipatity is historical only in ‘some’ countries, Dr Tony attwood is the emenet source of information on women and girls with Asperger’s syndrome and by his estimates of diagnosis rates in ‘women’ (as opposed to girls) the ration is close to 2:1 as you would expect with a genetic condition. [1:2]
Women/Girls tend to develop language skills much more early then Men/boys, this would probably account for the disparity is child diagnosis. Though in my experience the ‘detailed’ thinking approach used by individuals with autism stands out like a sore thumb irrespective of language skills.  This may be down to having asperger’s [PTEN, 5 [test] ,6] myself and the heightened senses that often go along with Asperger/Autism. 
Detailed language and thinking ‘patterns’  also often coincide with pragmatic (context) aphasia as opposed to semantic (meaning) aphasia often found in anti social personality disorder and idiomatic aphasia (personal) found in the more schizoid spectrum.
Yes, I definitely recognized myself, and also my little daugther in those points.
Special interests were unusual for a girl at that time, but not too unusual in themselves: The moon, Nelson, airplanes… In a boy, people wouldn’t have looked twice at them.
Active imagination: Defintely, I spent half my adolescence in an imaginary world.
I was a voracious reader from age 7, I was reading the Lord of the Rings and the Silmarillion again and again at age 12, I was reading so fast my pocket money didn’t even begin to cover the amount of books I consumed and I didn’t find anything of interest in the library anymore, so I switched to reading in English because it took me longer…
I was trained in social interaction skills from early age by my parents, but mostly by my mom, who is also an Aspi. In my family we have a culture of imitating normal social interaction to blend in. And as long as people play by the rules, I get by reasonably well. If they don’t, I mess up.
I do have one or two very good friends, whose company I enjoy. Being close friends doesn’t mean spending a lot of time with them. Also, quite typically I would say, I only enjoy their company when I am alone with them.
And YES, I do feel way more comfortable in male dominated environments, and always have from early childhood on.
Also, a big, huge YES to getting by unnoticed very long. Comorbidities were diagnosed and treated for years (depression mainly), but it took almost 40 years for anybody to find out I am an ‘Aspi’.
At the moment I am facing the dilemma of seeing much of myself in my little daughter, but because she joyfully interacted with the specialists testing her for autism, because we taught her from babyhood onwards to LOOK AT PEOPLE when tallking to them and other such things, she was attested to be perfectly non-autistic, but ADHS. And I am sure they are wrong. Because she is a girl, and no, she would not act like an autistic boy of her age.
But sadly, this verdict means she doesn’t get the help she would need right now in school. Again, I am seeing so much of my own school days now happening to her.
It is high time for more research going into how autism presents in girls and women. Otherwise they will go on suffering undiagnosed and without much help.
I switched to adult books at an early age too, because I would get my monthly bookclub allotment of two books and be done with them in a couple of days. They seemed woefully thin for how fast I read. Strangely the books I was drawn to were mostly horror books and I ended up scaring myself senseless with The Amityville Horror in elementary school. Which didn’t stop me from getting hooked on Stephen King books soon after. 🙂
That’s such a hard situation with your daughter. ADHD and ASD can look similar in young children (and in adults too), especially if they’ve picked up passable social interaction skills like your daughter has. Perhaps in time you’ll be able to get her evaluated again? It’s unfortunate that she’s going without services because of a misdiagnosis (or missed diagnosis, since ADHD and ASD can be comorbid).
Great article! I recently explained to my parents and brother than I have ASD (one by one at different times), and followed up the conversation with an email explaining what aspergers/ASD-1 is linking to all the clearest and simplest explanations I could find. I particularly focused on how autism present in females and adults. If your article had been around at the time, it would certainly have been in there because it explains some of the differences very neatly, in a way that is very easy to understand.
Now to my feedback on the traits:
100% yes. My big interests were animals (horses, guinea pigs, dogs were the big ones) and story telling/fiction (reading and writing). The way I went about that was reading, cataloguing, writing hand books and instruction manuals, equipment, training animals to do tricks, knowing everything about breeds and colours et.c. And yes my interests were the Big Axis of my life that everything else evolved around.
Totally 100% yes to this one too.
I was/am well articulate and learned to read much faster than my peers, although it wasn’t exceptionally early (in school, I was considered as having learned to read before I started in school, but my mother says that I could not and have always thought it was hilarious that they thought so. Apparently I learned it so fast that the teachers didn’t have time to discover that I could not read when I started in school).
Nope… Imitation is one of the two constructive coping strategies Tony Attwood describes his book (out of a total of four strategies) ‘The Complete Guide to Asperger’s Syndrome”. I used the other one, which is escape into imagination, almost 100% of the time. I don’t remember paying much attention to people around me at all when I was a kid, much less study and imitate them, and especially not the women in my family because most of their social manners are incompatible with my personality (e.g. constant direct eye contact, very modulated often high pitched voices when in company, talking a lot).
I did use imitation a lot as a desperate strategy when I was a young teenager. I didn’t do it very well though.
So my predominant “strategy” is to withdraw into interests and imagination. That worked socially when I was a kid, because some other kids found me inventive and entertaining. It was never hard to find something to do together with me – I always had lots of ideas and strong interests (mainly pets) that activities could be built around.
I did have friends when I was a kid, following the model you describe with one or two close friends. The friendship built on doing activities together around my interests, which were also my friend’s interests – so horses, guinea pigs, sometimes other animals, dogs, and creative activities. When the teenage years started, this model didn’t worked anymore and I struggled more and more until I eventually did not have any friends at all, and developed severe social anxiety, depression et.c.
Yes in very small amounts. I enjoy to feel that I am socially connected and part of other people’s life. So I value the social aspect of life, but when it comes to direct socialising, such as a face to face conversation, then I often find it difficult and confusing, and just as you describe, tend to get a social & sensory “hangover” where I feel miserable and “shell shocked” for a while afterwards (hours, days). That is typical for a 1:1 meeting with a friend where it went on for a bit longer or a bit more intense than I have capacity for. With close family, if I’m just home and hanging around without the need for intense face to face socialising but doing joint activities and sharing experiences, then I enjoy it. I also enjoy socialising with my pets and just having them around, but I am not sure it that counts:-)
When it comes to socialising in groups or even worse, at parties or dinners – no, I don’t enjoy that and I mostly dread it.
Yes it may be difficult to spot/easy to mask in some situations, while in others it becomes subtly visible that socially there is something off, after a little while. Mostly if I am overloaded and can’t keep up and start to give up and withdraw or sit by myself while everyone else hang out in groups and are busy mingling.
Yes very much so, both mental and physical conditions. These include depression, anxiety, social anxiety, borderline psychosis / personality disorder (but I think that was more of a misdiagnosis), eating disorder, gastrointestinal issues, dizziness and fainting episodes (suspected epilepsy but I don’t think that is it and it hasn’t shown up on EEGs if it is). And sensory processing disorder, but that is part of the ASD diagnosis as well.
As for the co-existing I mention, most are history. Only fainting, depression, anxiety, fainting, and now mild gastrointestinal issues appear to be reoccurring, and sensory processing disorder is constant.
First, congratulations on sharing your diagnosis with your family. I hope it went well. Your strategy of following up with written materials sounds like a good one. Thank you for the detailed comment. I’m going to come back tomorrow and reply because my word bucket is dangerously close to empty for today and I want to write something coherent. 🙂
Thanks:-) I thought that was the best way, because there is a lot of stereotypes, contradictions and misconceptions about autism floating around in society, so I thought it is only in mine and their best interest to provide a neat, clear explanation about what it is – and what it is for me, particularly (as a female).
It was quite easy (not to tell them, but their reaction). My mother said that she set off a weekend to read everything I sent her, and that she will send me comments once she finishes it all:-) I also sent her the link to your article just now – which is, I found a better link because the link in your post is broken!
My brother, who I told first because I suspect he might have aspergers too, said that he is already familiar with aspergers. He has in fact speculated if he has it, and has done an online test a few months ago which had him just around the threshold. He did the Rdoz aspie quiz and emailed the result to me, so that was fun! His reply to my email, where he explained how he goes about socialising, very much confirmed my feeling that his mind runs on an aspie operative system too… but he has always seemed much more adept and accepted socially than me and has a more social life.
My dad (who I told second, about a month ago) sounded a bit sad and overwhelmed and said “Yes, OK” as if he had expected something like that. He said I didn’t need to send him links and explain because he already knew aspergers, but I did it anyway because I thought he might not know much about how it presents in females. So I don’t know if he has read any of it. But that doesn’t matter, it is fine either way.
I’ll probably tell the rest of the family too (gradually).
Thank you for pointing out the broken link. AWN is undergoing a website upgrade and I accidentally jumped the gun on promoting the article. My bad. I fixed the link in the post to point to the updated page now.
Your story of how your family reacted covers the entire range of possibilities, doesn’t it? 🙂 It’s great that your mom is so open and encouraging. Perhaps your dad needs some time to process it. I think it can be hard on parents if they feel like they always knew something was “wrong” or as if they should have spotted it or something.
(I know that’s why the link was broken, there was a maintenance note on the website)
I am happy with my dad’s reaction, it shows he accepts it in his way (and it also seemed like he already knew somehow). And yes, he always need a long time to process new information but then he truly integrates it.
I have a sort of instinctive understanding of my dad (and brother), whereas I don’t get my mom well, and feel a strong need to keep her off my boundaries because 1. she has a poor sense of boundaries, and 2. I have no clue what she will do, and 3. she has a poor sense of what is appropriate, and 4. She seems to assume she know me but whatever it is she imagine I’m like if very off the mark, and she always get surprised/shocked/offended about my feelings and reactions, it is like she is having a script for me that only she knows, and she can’t understand why I am always off script:-) I have had little contact with her most of my adult life mainly because I find her very stressing – mainly due to the 3 points I mentioned. So I wasn’t just nervous that she would reject it but also that she embrace it and maybe use the information inappropriately or inconsiderately somehow. So telling her this and providing her with personal information was quite pushing the boundaries for me, but I am glad I did and I appreciate that she takes her time to look into it. I think for her, this may be the point where she realises that I haven’t had all the problems I’ve had and her relation with me hasn’t failed because she failed to carry out all the instructions for raising a kid correctly (which I think is what she has assumed), but because it was the wrong instruction manual:-) She is 70+ yo, so it is interesting what this can led to, I think it may lead to better understanding and a positive change in the relationship – taking the guilt off my mother’s shoulders that I know she’s had about her motherhood “gone wrong” and opening her mind for a change in perspective; for explaining all the “mysteries” of my life history and behaviour in a fundamentally different way. And maybe enabling her to begin to understand my personality.
Initially I asked her to keep it confidential, but now when I can see that she is taking it seriously, I said that she can talk to who she wants to about it if she feels the need to it (I don’t think I have the right to put such a barrier in anyway, she is a social person) and she has thanked me for that and said she would like to talk to her sisters about it. I hope the way she’ll talk about it is serious and not just like use it like a flash of sensational news, but that is not up to me and now the ball is sort of rolling, so I’m curious to see what comes out of that and how people will react. My mom’s side of the family is extravert and collectively minded, so I’ll probably get some emails from family members asking questions for clarification.
(I meant 4 points, above).
(maybe I don’t need to apologise, but..: I am writing these comments quickly before going to work, that’s why there are so many mistakes and typos… It is what my writing looks like without thorough editing. I hope it isn’t too annoying with all the grammar mistakes, typos and uncoordinated punctuation.)
Not too annoying at all. When I read comments, I think my brain skips right over any typos because I’m reading for content/meaning. Also, I’ve been having lots of language issues so I totally understand how unedited comments can be a bit glitchy. 🙂
Thank you:-) Glitchy is very accurate.
That part about asking your mum to keep it confidential made me smack my forehead, I wish I’d thought of that with my mum before she started telling EVERYONE about my diagnosis, including my old Kindergarten teacher who she ran into at the supermarket and who she hadn’t spoken to in about 20 years. My mum has no sense of social appropriateness. I wonder why. 😉
😀 Yes that is precisely what I feared my mother would do. So I just wanted to be sure that she read some solid information about it first and thought thoroughly about it for herself before she started to possibly use it as a news flash (as she might… hopefully not, but realistically…). Talking and getting everyone else’s unqualified opinion prematurely can easily prevent proper reflection I think.
Okay, I’m back. I smiled when I saw that your teacher thought you arrived at school learning to read but your mother says you didn’t. I wonder how so many of us seem to have learned to read instinctively? It seems to be a fairly common trait among people who have commented here.
I think I rely more on the social withdrawal strategy as well. And it suits me. I’m very good at imitation and also not that motivated to make an effort at it (one is probably directly related to the other).
Pet socializing should count! 🙂 I find that with family it’s easier to engage in side-by-side play type of interaction. So when my daughter visits, we might both be sitting on the couch with our laptops, doing whatever and occasionally talking about something of interest. Or we’ll play video games together, which is interactive but doesn’t require constant talking. Even if we go out shopping, there will be long periods of silence between us and we’re both very comfortable with that. She’s not on the spectrum, but she does seem to have a lower tolerance for socializing than the average person, which is interesting, especially since she’s quite adept at it.
That sounds lovely. Parallel play rocks:-)
Ps. I am very impressed by your enormous productivity replying to so many comments with great, thoughtful answers. Thank you.
I learn so much from the comments here. Replying feels important, even if sometimes it takes me a day or two to do it. Thank you for always being so open and thoughtful when you comment. 🙂
Thank you too:-)
Yes, I wrote about gender bias briefly here:http://worldwecreate.blogspot.ca/2013/04/autism-awareness-month-gender-bias-in.html
Special interests: *Movies from the 1935-1960 era especially and certain celebrities ( like Audrey Hepburn and currently Wicked with Idina Menzel and Kristin Chenoweth)* As a child I also loved the 1800’s- 1900’s and made my mom make me bloomers to sleep in and go to heritage houses because most of the movies from the 1930s – 1950s were based in that time period…and I also loved Anne of Green Gables, Little Women ect. I had an obsession with music and esp Elvis Presley. Instead of Disneyland that my parents offered I begged to go to Graceland…and I did…and got teary at Elvis grave in Junior High ( yup) My room was covered in posters of music and old movies…Beatles, and the Civil War became an obsession ( even though I am Canadian) from being down to Graceland for awhile…
In fact I would say most of my obsessions/special interests fluctuate depending on a trigger. I have been a specialist in many areas in my short 30 years…at expert levels. When my kids were younger I knew more than most doctors about treating infections, all the names of antibiotics and side effects, diagnostic criteria ect…then it was organic everything for a few years and all the ins and outs of that…now it is currently Autism and Psychology…It is usually whatever is relevant to my life, but I would say music and theatre are the continual standards.
I am the queen of drama and acting…and I love being pretty. A little less over the last few years but I was known as the bold fahionista growing up and was respected in High School because of my gift of imitating the right people. I was pretty enough to pull it off and had an obsession with beauty. Now I prefer comfort but I will still forgo comfort for short periods to create an illusion.
I have many friends but since my diagnosis I have let go of many too. I used to be the “connection girl” in my small town. I connected people to others and sent them on their way. So I had the exciting initial experience with them…and got deep fast…and then moved them gently along to people and resources that suited them. As I am getting older I find I have less energy for that…and I always paid for it somehow, got sick or had to take a long quiet time later even if I enjoyed it.
I am more polite and socially appropriate than my normal friends…but its all ingrained from a lifetime of masking. It just happened…and studying humanity to understand. I can tell motivations and intentions from a single sentence and facial expression.
I have tons of co existing conditions ( ADD, sensory overload, depression, a tad of ocd anxiety, Fibromyalgia, PMDD ect…Aspergers was the only thing that finally explained it all and tied it together.)
My first words were sentences. So were my kids. My daughter said “see ya” to another adult when she was 9 months and they stopped with jaws dropped. She’s a verbal power house. I use common phrases wrong if I do not hear them or they do not make sense to me (cultural sayings, idioms ect) But I generally have whatever words I need to make a point unless overloaded.
My imagination is amazing and so are my children’s…but ask us to make up a story on the spot with specific things and we can not…but if we are engaged in our special interests our imaginations are incredible. It’s simply a different way of doing things.
So yes a new diagnostic method. Also for boys…my youngest did not make a diagnosis yet scored in every area except the socialization…he was too engaged…even though he ignored her a lot…he was polite and she said he is not autistic. He is. It’s just different in his case. Instead of not wanting to hang out with people like my other autistic son, this son thinks everyone is his best friend and does not understand social interactions in a different way:)
This was long…I could have gone on with this subject matter!:) We don’t get to talk about our quirks much to people that take it seriously!:)
Ps I feel things in my gut… Stress, instincts… So when I calm that down IBS is manageable they visualization… So I don’t have as many gut issues as before but it’s always a warning for me..
It’s amazing how a special interest can make us self-taught experts, isn’t it? I wish I knew what it was a about a subject that creates the special interest hook. I don’t think I’ve ever deliberately chosen one. They seem to choose me.
That’s really interesting about you being the person who connects others. I don’t think I’ve ever heard someone describe a relationship pattern like that but it makes a lot of sense. Relationships can become exhausting in the long term, but those initial stages of friendship can be fun and relatively less challenging to maintain.
You make a great point about social difficulties going both ways. So often we assume autistic people are loners or socially awkward, but a complete lack of boundaries and understanding of how friendship works is also a deficit.
“Special interests look different in females.” When I was a kid I was obsessed with map books and numbers (my number obsession eventually grew into an obsession with mathematics — but it started as an obsession with numbers in and of themselves). These seem like typical, textbook autistic interests. However, when I got older, I developed less narrow, more complex interests, such as literature, TV shows, historical time periods, etc.
“Girls and women often have active imaginations.” I’ve always had an active imagination. More active than what is assumed under the stereotypically “male” model of autism? I have no idea, as I don’t think any fair study into autistic imagination has been carried out. I created imaginary worlds in my head, and thought of epic adventures for fictional characters I’d created, while walking around in a circle with my eyes unfocused. Anyone who saw me would likely conclude that I *wasn’t* imagining. They’d think I was just walking around in circles aimlessly, and my unfocused eyes might have made them assume nothing was going on in my head. I also wouldn’t have told you anything about what I was imagining, even if you’d asked me. I would have found such questions overly invasive and discomforting. I wonder how many other autistic people — of any gender — were like this as children, and whether researchers have observed them and concluded that autistic people are unimaginative.
“Autistic girls may be more verbal or hyperlexic.” I started speaking early, but I had trouble learning to read at first, to the point that I was reduced to tears (I eventually caught up, however).
“Girls and women may be better at faking social interaction through imitation.” This doesn’t fit me at all. It’s almost hilarious how much this doesn’t fit me.
“Autistic girls and women often have friends.” I’ve spent most of my life friendless. The friends that I did have in my childhood/teenage years did not tend to be socially adept — they tended to be of the clingy and needy type, who imposed their friendship on me only because they were lonely.
“Autistic girls and women often enjoy socializing.” Yes and no. It is true of me that I sometimes like socializing, but most of the time I don’t. I don’t tend to seek it out, either.
“The social difficulties of autistic females may be more difficult to spot.” I’m not really sure if this is true of me. While I didn’t get diagnosed until I was in my late twenties, multiple people have assumed I was probably autistic since the 1980s. So… yeah. I don’t think my social difficulties were necessarily difficult to spot. No one I have told about my diagnosis has been surprised. I’ve definitely never had the experience of people denying that it could be possible, or telling me that they can’t tell I’m autistic or that I’m obviously so “high functioning.”
“Coexisting conditions are common in autistic females.” Yep, I’ve got coexisting conditions. But I wonder if things like depression and anxiety are overlooked in autistic men, as these are seen as being “female” things.
I think the “lack of imagination” came straight from Kanner and hasn’t been updated much since. Asperger thought the boys he saw had imaginations but that they were “useless” because the boys uses their imagination in impractical ways and fantasized about things like spaceships. Which I guess was impractical in 1944, but, you know, not a very accurate assessment of imagination in the long run. 😉 There’s also the issue of autistic kids using toys for sensory play rather than as the expected imaginary play tools.
Do you think you might be dyslexic and that accounted for your early reading difficulties? It sounds like it must have been very stressful.
I’m getting a sense that the trio of socializing questions seem to apply as a whole or not at all. I’m more on the “not at all” side of the spectrum, but it seems there are a good number of people who are more social than would be expected under the traditional model.
Here’s how I fit in: (btw, I don’t think I’ve ever used that sentence before)
Special Interests – they come and go. I’ve also noticed that they are inappropriate for that point in time or they contrast with what I am involved in. For instance, in grad school for pure math, teaching, only-parent of a preschooler – I self-taught myself about plate tectonics. When I joined a Christian church I studied atheism. Basically, I would pick up a special interest that didn’t make sense to NTs.
Active Imagination – I was once in love with Trixie Belden’s friend Jim, a character in a fiction book. I still remember kissing him, but it obviously never happened.
Verbal – I was a voracious reader, still am. I learned to follow written instructions at an unreasonably young age. I got beat up in 7th grade for my large vocabulary.
Faking social interaction – yup, did it, still do it. My face sometimes gets stuck in a fake smile.
Friends – they last for a few months, the really good friends last 2 years. I tend to make friends who are younger, less experienced, and struggling in some way.
Social difficulties – I am more comfortable in male dominated environments. I am uncomfortable in crowds unless I can touch someone I know.
Coexisting conditions are major depression, anxiety attacks, and narcism. Personally I think the narcism diagnoses is Aspergers in disguise.
One thing that makes people think I am not autistic is that I can talk easily to anyone. I needed to talk because my younger sister is extremely introverted and has social anxiety. I talked to her and for her since she was born. I’ve practicing talking for 42 years, of course I’m good at it.
Hooray for fitting in! 🙂
I’m more comfortable in male-dominated environments too and have generally gravitated toward male-oriented pastimes where I’m the only woman or one of just a few women participating. Perhaps because it absolves me of having to figure out gender-related social rules? Among a group of women, I tend to feel like I’m doing things horribly wrong and everyone knows it.
It sounds like you learned to talk to anyone as a support to your sister, so it’s a skill you’ve developed since childhood. When my daughter was younger, I made myself do parent things even though I dreaded them because it felt important to her development. Without that strong motivation I wouldn’t have ventured out into those situations. I wonder if your outgoing nature also figures into the narcissism diagnosis – if you’re gregarious and outgoing but social insensitive (not saying you are, just hypothesizing!) I that would fit some of the traits of a narcissism diagnosis.
Yes! The only female friends I’ve ever been close to were the ones who somehow or other didn’t really conform to societal gender norms or behaviour either. Takes the pressure off.
Good strategy! 🙂
Hi and thanks so much for doing this. I really admire you for trying to contribute so constructively to people’s lives and offering them a place to speak about their experiences and be heard.
I have many thoughts about all of this and people’s responses, but need time to think about it all. But to respond to your staements:
– Special interests: i loved facts, maths and word games, poetry and designing houses for myself. I collected reference books because i felt they gave me rules to the world (including emily post). I wasn’t great at remembering the facts though, but I found their presence very reassuring. Was a tomboy, never been into pretty stuff, jewellery, shopping etc or trying to attract attention by my appearance.
– active imaginations: i definitely use/d imagination as an escape, love/d reading and writing fiction, poetry, the sound of words, word games etc No acting for me, but I always took and used phrases from all the books I read, often wildly inappropriate, so got labelled as precocious.
– verbal or hyperlexic: not sure about hyperlexic, spoke at 9mths, read and could spell before school (5yrs here). Definitely a “fast, voracious reader”. It meant nothing except I was bright.
– Faking social interaction: well I tried and still do. But am old enough to not care too much. Yes to learning to create the illusion – am of an age where I was undiagnosed as a child and if my mother wasn’t present I was expected to play the role. Which I did as politely as I could then left by a side door as soon as possible. I was shy, a terrible blusher, and introverted, but also outspoken (read too honest here) in my opinions if asked, and was never prepared to be bullied. My parents helped me with that early on.
– Friends: not close ones when I was young, couldn’t maintain them. But now i’m 49 and have learned heaps over the years. Only bother with people who understand me and whom I really respect and enjoy. I have a couple of ‘close’ friends I see 4-8 weekly (that’s close for me). We occasionally text or email in between. One is 10 yrs older, the other 10 years younger.
– Enjoy socializing – only on one-to-one and only occasionally. No groups, and yes to high cost for any of it. Sometimes it’s as if there is a switch, no matter how dear the friend (some 20 yrs), and I just have to leave.
– Social difficulties: yes but have almost given up caring. Use scripts and skills learned from training in counselling etc. Work with men, prefer that, so much easier. Different culture here than in the States though. Practical, strong, honest women are quite highly regarded here.
– Coexisting conditions: yes to recurrent depression & continual anxiety, some obsessive compulsive tendencies, and for some months I could only whisper to strangers when in my teens. I never received or asked for treatment with any of these. Multiple auto-immune disorders, joint problems and sensory issues, though not extreme.
All the very best for your holiday, I hope you have a great time with your daughter. I know I would not have made a good mother and so chose not to have children, but it always makes me feel joyful to hear how much the lucky ones treasure each other. So, many thanks for sharing that, too!
It sounds like you’ve found the right amount of socialization for you as you’ve gotten older. I think aging is generally a good thing for those of us on the spectrum. There’s something about middle age that just makes you want to say “screw it” to so much of the hard stuff, like faking social interaction.
Thank you for the good wishes. I didn’t actually plan to become a mom (at least at that point in time), but it’s turned out well enough. 🙂 So I understand when others on the spectrum say that they’ve chosen not to have children because they doubt they would be good at it. I don’t think I could have handled more than one child and deliberately chose to have just one for similar reasons.
Even males have great difficulty obtaining diagnosis and often don’t do so (if ever) until much later into life (source, go ask on any autism group)
More over you may be thinking that ‘as a male’ my gender (so stereotyped) would bias or prejudice my appreciation of women. However I have spent almost my entire life surrounded by ‘women’ and indeed gender identity (though not usually sexual identity) is often an issue for males with Aspger’s syndrome. Dr Tony Attwood notes (in his book The Complete Guide To Asperger Syndrome) that people with autism often have friends predominantly of the opposite sex.
Misdiagnosis is also very common, the main issue with this is the ‘maltreatment’ of patients and given the hyper/hypo and a-typical drug responses people on the Autistic spectrum can often have (as noted by UK NICE guidelines for Autism/Asperger’s) I would consider such treatments to be a ‘cruel and unusual’ punishment especially as ‘moral conditioning’ that is ‘right and wrong’ and other kinds of judgements of morality, cleanliness, etiquette and such are often made during diagnosis. Neuroleptic (the name for ‘antipsychotics’) literally means brain seize, like ‘epileptic’ and those drugs are known to lower the seizure threshold and indeed there’s a strong association between autism and epilepsy.
So where does this leave us in terms of diagnosis?
Well around 50% of the genes for Autism/Asperger’s have now been identified, this will allow for acurate genetic tests for many people, though may currently identify a good number of people at ‘sub clinical’ levels (false positives) but personally I don’t feel that the ‘disease’ model approach is a valid one ego there’s no such thing as a false positive in that instance.
Diagnosis is often symptom based as are criteria for disability in the UK and given that Asperger’s/Autism is a ‘complex’ of a number of different conditions with similar phenotypical presentations I would say that a model that addressed particular deficits and issues and individual had, irrespective of any diagnosis they may or may not have, would be by far the best treatment and possibly diagnostic approach for all people whatever condition they may have. Researchers are also moving away from DSM categories and starting to focus more of specific areas of deficit and approaches are being developed that are drug free or use ‘stronger’ drugs such as MDMA and Ketamine and hormone based treatments on a PRN basis alongside meditation, social and language therapy etc… DBT would be one example of a drug free approach, as would ABCT.
That does not however negate the differences in drug responses in individuals on the Autistic spectrum that can often be very damaging in both short and long term (e.g. some drugs induce a condition akin to AIDS, low white blood cell count etc… that can be fatal)
Nor does the ‘disability’ approach neglect those who may be of superior skill, rulings in the USA have stated that individuals with deficits in certain areas, must, receive support irrespective of there abilities in other areas.
So, in summary:
Some aspects of diagnosis are critical and can be done ‘genetically’ for many people ‘now’ and even more in the future, the key thing is the ‘area of deficit’ when it comes to treatment etc… not the diagnosis, and this applies to all individuals irrespective of diagnosis or gender. 😉
Alongside Autism/Asperger’s there are a number of other comorbid conditions that often develop such as ADHD/ADD (that there is now some kind of objective test for), bipolar, psychosis, delusions, OCD etc….
Many of those ‘comorbidities’ not limited to Autism/Asperger’s could well account for some of the other symptoms associated with Autism/Asperger’s syndrome, for instance ADHD/ADD is strongly associated with Hyperfocus that could intern develop into ‘narrowed interests’ and inturn to ‘obsessive narrow interests’ creating a comorbidity of OCD. The latter link is noted by Dr Tony Attwood.
Detailed, object oriented, thinking found in Autism/Asperger’s may well be a precursor for ‘narrower interests’ especially when combined with co-morbid ADD/ADHD, but it does not follow that all individuals with Autism/Asperger’s ‘must’ have narrowed interests, otherwise it would say that in the diagnosis criteria, which is doesn’t!
Again the more ‘objected’ less ‘self’ orientated thinking in those with Asperger’s/Autism would lead and greatly contribute to the social deficit, but it does not follow that there ‘must’ be a social deficit.
Often one of the greatest issues that makes Autism/Asperger’s ‘disabling’ is not the thinking pattern and other ‘traits’ often associated with Autism/Asperger’s and often the but of jokes, but the extremes of sensory perception (what I would call Extra Sensory Perception) and let us not forget that our senses also include psychosomatic senses such as thought/emotion induced pain (as the result of rejection for instance) felt in a ‘black and white’ ‘all or nothing’ concrete way and there is a whole myriad of synesthetics associated with Autism/Asperger’s….
One surprising issue with sensory perception is not just the ‘overload’ states that are typically portrayed but the hypo[under] sensitivity. One serious consequence of this can be a failure to notice pain and so either suffering or failing to seek treatment for injuries, failure of Drs to recognise the level of injury (or indeed pain) a patient is in due to discrepancies between the apparent observable injury and the reported pain response. More over children with Autism (and possibly indeed adults) have been known to self harm, for the experience of the endorphin rush, the pain (that they don’t feel) being partly responsible.
So far as women and girls are concerned, Anorexia, seems to be a key issue with girls on the autistic spectrum and Rudy Simone books have often been cited as being beneficial.
Two women on the autistic spectrum I would say provide good insight into the condition in an easily digestible way would be ‘girl outside the box’ and ‘dizzydolly’ on youtube.
FMRI scans are also being used to identify people with ASPD by way of a pleasure pain inversion response, though equipment is in such short supply that only 10s to 100s of people are being identified this way it is still an effective approach for identifying even children. Linguistics models are also and have also been looked at, such as pronoun density and usage differences between different core groups of individuals, ASPD, AS, and schizoid for instance. High first person pronoun density is noted in ASPD, pronoun ‘inversion’ in AS and over ‘personalisation’ or idiomatic language use in schizoid.
Looking at areas of the brain associated with these conditions, larger amygdala can be found in AS, often associated with fear response and having a large number of opioid receptors, differences in the amygdala (which is a cluster of cells and almond shaped) are found between, men, women, homosexual men and women and people who meditate. one of the dormant differences in the amygdala in people on the AS spectrum is the ‘duration of activation’, people with ASPD (anti-social personality disorder) are often found to have much smaller amygdalas and also difficulty learning from ‘fear’ and ‘pain’ are key elements of people with psychopathy.
Other areas of the brain associated with ’empathy’ have also been found to be different, one key are is the area associated with ‘theory of mind’. Theory of mind deficits are apparently in both schizoid and Autistic spectrum individuals.
Individuals on the Autistic spectrum actually have greater ‘affective’ [feeling] empathy but may have muted appreciation of this, however music has been found to be useful for adjusting mood. Individuals with ASPD however has greater ‘cognitive’ empathy but less (often inverted) affective empathy.
There are other kind of empathy is ‘motor’ empathy, this is strongly associated with ADHD where the region of the brain for motor control is more developed that the region of the brain associated with higher order thought in relation to motor coordination. (that does not mean that it’s ‘less’ developed than normal, it could mean that the ‘motor control’ area is superior…. it could also mean that the ‘motor control’ area is normal and the ‘co-ordination’; are inferior, but I’ll get onto that).
CATA Evolution, what can be learned from the Autistic spectrum, 4 hours of lectures going into a number of areas of neurological development in a great set of lectures in relation to Autism/Asperger/Schizoid/Williams Syndrome and genetics etc… it may well place too much emphasis on Copy Change Variants though.
It does however cover a lot to do with mirror neurons,
Mirror neurons (what I like to call sheeple neurons) activate when another person performs or is about to (that is context sensitive) an action, they have been found to be ‘under active’ in people on the autistic spectrum though in one study, not ‘dysfunctional’ that is, they operate ‘normally’ and in the same way as with other people but at lesser of an intensity.
Mirror neurons, neurons that couple the self to the other [self] are found to go into a state of cascade firing during episodes of psychosis (psychosis being found both in Autism and in Schizoid spectrums but not in ASPD is at-all in ASPD).
Psychosis is also found in trauma related conditions such as BPD, PTSD and in possibly neurological conditions such as ‘bi-polar’ that have strong links to trauma. Psychosis is also conversely found in conditions such as depression that have strong associations with feelings of guilt. The predominant difference between PTSD and anxiety related conditions and depresion is that Anxiety related conditions are ‘outwardly’ focused, hypervigilance etc.. where as depressive ones are ‘inwardly’ focused, self blame etc…
Indeed similar can be said for mood swings etc.. as found in bi-polar.
Chemicals such as serotonin and ketamine [GABA?] have been found to be highly effective in treating those conditions, especially when stronger drugs such as MDMA have been used and ketamine (in treatment resistant patients), though personality differences can lead to atypical responses such as aggression and with milder serotonergic substances such as SSRIs suicide.
One of the key areas of the brain that SSRIs have been found to function on, and also in some respects part of the dopamine pathway, is the area of the brain associated with the ‘default mode network’, there’s some discrepancy as to exactly what areas of the brain make up the default mode network and indeed some areas of the basal ganglia, most associated with depression may have a part to play. The default mode network also has a good part to play in the formation and storage of memories and is also associated with the amygdala, mentioned earlier.
What does that have to do with the price of fish?
Well, the default mode network is activated when the eyes are closed and senses suppressed, when self ‘introspection’ / ‘association’ is being done and is directly opposed by the visual system. The visual system being found to be much more heightened in people on the Autistic spectrum. This area of ‘idio/self sensory’ brain also has a good degree of correlation between it’s activation patterns and psychosis conditions, and the other conditions mentioned, and given mirror neuron cascade found in psychosis and the strong functional correlation it would be a miracle if those two functional systems of the brain where not directly linked. Such that gross ‘under’ or ‘over’ activation of the default mode network could lead to mirror neuron cascade found in psychosis.
More over this leads to some non drug based treatment approaches such as open mindedness meditation used in DBT and ABCT, where the procedure is to close ones eyes and focus on the breath, activating the default mode network. This kind of meditation has however been found, conversely, to induce states of psychosis… Psychosis being a good or ‘bad’ think open to debate, suicide rates in schizophrenia with strong depression characteristics are high and correlated with more episodes of psychosis where as people with bi-polar deliberately stop taking their medication to experience psychosis, alikening the experience to ‘directing a movie’
These brain differences in relation to the sense of self, empathy and senses in general play key parts in Autism/Schizophrenia and ASPD and also in the presentation of many co-morbid trauma related conditions, Schizophrenia itself may be purely trauma related due to ‘expressed emotion’ in the environment (including passive aggression and body language), research is focusing on neuro linguistic diagnosis and treatment approaches along with other drug free approaches such as meditation, social skills development and generally ‘tooling up’ of individuals and progressively earlier ages to improve their mental ‘immune’ systems. There is little in the way of research and treatments for the more sensory aspects of the conditions though, apart from the meditation approaches mentioned, though some desensitisations work for some phobias, such as arachnophobia, other phobias are sensory related such as acrophobia (fear of heights) related to spacial sensory perception and the fast the body has multiple (at least two) different ways of balancing (say via visual input and via the labyrinth in the ear canals)
What else, well I’ve written quite a lot here, I’ll have a go at putting the whole lot together with the appropriate citations and making sure and gaps or things that have been missed are filled in. I set my timer for an hour and my hour is up and I have other things to get on with today.
Hope all that I have written answers the vast majority off all questions and points raised in this treat if not a good number of other treads especially in relation to the state of the art.
I feel a little bit of sympathy for the psychotherapists as well. They are constantly trying to redefine the criteria, in order to correctly diagnose people. Too narrow and a large group will go undiagnosed and will continue to struggle, too broad and a large group will be diagnosed without reason (something that is already being claimed by some people about the autism spectrum, saying “everyone’s autistic these days”).
So they don’t adapt the criteria to the person, they try to fit the person into the criteria. And that’s just not going to work perfectly, because we humans are such a unique and diverse bunch. Adapting the criteria to the person is basically what I did in explaining to the psychotherapists how each of the criteria fit me, even though the ways in which they did weren’t “text book”. But that really requires an open mind on the side of the therapist, some heavy duty self-advocacy, and a powerhouse of knowledge on the subject. The person leading the diagnostic team said I probably knew more specifics about the subject than she did when she gave me my diagnosis. And that is definitely going to disadvantage people who don’t present “typically” in one form or another. Like being female when the “typical” autism case is male.
It is really hard to pin down an appropriate band of criteria to catch everyone. Eventually I think we need a better system but I have no idea what it would be. Including more physical criteria seems like a good step. So adding things like sleep disturbances and gross/fine motor coordination delays/difficulties along with the recently added sensory sensitivities to the psychological criteria.
Actually now I’m older and have a basically comfortable ‘life-routine’, the things I notice far more than social issues (I guess because my performance in that area has become less important to me) are the sensory issues which are always present, and my damn CLUMSINESS! The lack of fine motor control is one thing that seems to get worse for me as I get older, even though I am aware and try harder to prepare for it, and it is such a pain. Brand new shoes – I spill oil on them on the second day, I splatter my clothes and can’t get some of the stains out, i cut myself, drop things, whack myself in the face, get covered in bruises, etc. Small stuff I know, but on a daily level it makes a tiring life even more tiring – and so messy! 🙂
Funny you should mention this. I’m sitting here icing my knee after taking a bad fall yesterday and I’ve spent the past 24 hours cursing my epic clumsiness. It’s definitely worsening as I get older and that’s pissing me off. 🙂
I can so sympathize with the stains and accidents and general messiness too. Feels like we’re all thumbs some days, doesn’t it?
Oh please don’t tell me that! I was feeling so proud of myself for managing to break only one wineglass in the past year. Granted, I only get them out for fancy dinners. So I’ve used them maybe 5 times total. But still. Oh and I’m not even mentioning the fist sized bump I had on the inside of my leg last week, complete with fancy bruising and a huge cut in the middle. No idea how I got it, but probably hauling some building debris out of the house two days prior. Is it really going to get worse?
Sorry to hear about your knee, by the way! Hope it feels better soon.
I may be feeling especially pessimistic after yesterday but it definitely feels like it’s getting worse. Perimenopause is not helping at all but there may also be other factors contributing. Hard to say yet
I think even more important than a specific diagnostic model for women (also because of gender fluidity) is the fact that the whole description and diagnosis of autism should focus more on what’s going on inside someone’s brain than the behavioural model we have now. They forgot to realise that a developmental disorder does not necessarily show itself in the exact same behaviour for everyone.
Yes! That’s an excellent point. The problem right now is that no one seems to agree on what’s going on in our heads neurologically.
I mean more the underlying ideas of executive function, central coherence, etc.There’s no consensus on what the underlying underlying or the main thing is, but we could at least consider a couple of them together.
Oh, I see what you mean. I think the overall diagnostic model does account for things like executive function and central coherence issues, but the way it goes about it doesn’t make that obvious, maybe? In part, I think it’s because the diagnostic traits were developed before anyone understood things like executive function. In reading Asperger’s original paper, it’s obvious that if he access to a more sophisticated model of how our brains work, some of the things he called mysterious would have made perfect sense. In a way, it would be great if instead of patching the diagnostic criteria with each DSM revision, they would completely rewrite the model, using the underlying ideas that you mention as well as some more physical traits. At least that would bring the diagnostic model in line with what we know today about the more holistic (big picture?) aspects of the autistic brain.
umm… no there’s a reasonable consensus about the neurology, certainly at the gross functional level. ‘Treatment’ and ‘Causality’ now there’s a hell of a lot of debate surrounding that.
Looking at the traits mentioned:
Special interests: I don’t remember if I had any, maybe my parents’ medical encyclopedia.
Active imagination: For most of my childhood I had a fantasy world that I withdrew in. I still spend a lot of time talking to people who aren´t there. I read a lot of fiction.
Verbal/hyperlexic: Definitely very verbal, and I read quite a lot. Although I did seem to be behind in terms of the difficulty in what I read. I remember handing in a book report for a children’s book when I was 14, and getting remarks about that.
Faking social interaction through imitation: Definitely.
Often have friends: I always did have one or two friends I hung out with a lot. Since I was about 18 I started to realize that it seemed kind of clingy and exclusive. Also have been bullied for most of my school years.
Often enjoy socializing: I do sometimes enjoy socializing on a 1-on-1 basis, but indeed, costs a lot of effort.
Social difficulties more difficult to spot: Always hung out with younger people, tend to feel more comfortable in groups of men (like working in IT), although 1-on-1 I am more comfortable with women. And I always have the feeling I manage the ‘getting to know’ stage fairly well, but start to fail soon after. As long as there is something interesting to do or discuss it’s fine, but everything else isn’t.
Comorbidity: Have also been diagnosed with NOS eating disorder and dysthymia before the ASD diagnosis. I do wonder if some of these diagnoses are a result of the lack of diagnosis or proper ‘treatment’ of the ASD.
I loved encylopedias in general as a kid. We used to have a children’s set and a regular set that I so enjoyed browsing through and reading random entries in. 🙂 Also, I have the exact same problem about not really knowing how to get past the getting to know you stage of friendship to the maintaining stage. I also seem to make friends by accident rather than on purpose.
Do you think a lot is also attributed to environment and how we were raised? I honestly think my levels of imitating and friendliness and friendships is from living in a bubble. I had to go to a small christian school and stayed in the same town for over 25 years. Growing up the only change i had was moving from one house a few blocks away to another. My friends were required by the rules of the school to do unto others…not that it always happened but there were rewards for kids who did that…so bullying was not extremely common…self righteousness was and judgement, but that is easier to fly under the radar if you figure out the game. My dad was an out of the box thinker and pushed me on all levels to defy with my thinking. My mom is OCD and required strict attention to appearance and proper polite relationships. I think overall this made it harder for me as an adult. I went through a crisis and when I found out I had Autism/Aspie I had to re frame everything and become who I truly am…that has taken years. My husband says that in the end, I used my childhood to work for me, and though it was supportive in some ways, my essence was almost always stifled. I was always sick from masking so much and wearing what my mother wanted…and the dress code of the school was strict too and everyone dressed similarly. I think all these factors made it easier for me to fit in, but not easier to just be me. I also attracted others with my appearance because my mother trained me that way and that is how I got love from others. My face had to be scrubbed. She was constantly fixing my clothes, my face, my hair. It always hurt and always made me uncomfortable but I was supposed to deal with it or have consequences. I kind of learned to adapt. Sad but true. So I imitated the great actresses at differing levels. I can be a chameleon, but it came at such a cost. So, yes I had maybe an ideal environment to make me seem mostly normal, quirky or bohemian…YET, I always felt torn in two until the last few years. I always felt stressed and near crisis mode in some way. I did not adjust well and faced strict discipline if I acted out. So this could be looked at two ways: Bad because I fit less in both the normal world and the Aspie world…and good because I CAN fit into both worlds. It’s bittersweet.
Being a homeschooling mom – I now have adjusted to motherhood and am loving being at home and controlling my environment. I have gained some weight and lost some of that fitting in beauty, and I have stepped back from connecting people and have focused my energy just on my husband, kids, best friend and a couple other people occasionally. I like to stay in my home and make it a haven…and my sickness are way less…and I love myself more…but boy was it a journey of 9 years of therapy..and we still go over the same things in therapy we did 9 years ago which is sometimes depressing. All in all, I live where I can thrive and thus, the socialization factor is mine to choose now. Do you think that this conditioning and our choices and environment also make a big difference? When diagnosing adults I think it’s important to find out what conditioning they had so it can be deconstructed a bit.
I think childhood can have a huge influence on how well we pass in adulthood, definitely. It sounds like your mother in particular was really conscious of social norms and drilling social conventions into you, regardless of how uncomfortable you were. I was raised in a fairly normative family too and learned social rules early on. I think kids raised in strict traditional type environments learn to conform a lot more quickly because the penalties for not doing so are so high. Most clinicians take upbringing and family environment into account when diagnosing adults. A substantial part of my diagnostic interview was spent discussing my it, in fact.
It sounds like a long hard journey you’ve made but ultimately worth it, since you’re in a healthier, happier place. That must have taken guts and determination to work through.
I’m N’s (From Obscurity) boyfriend.
My interests have been/are more stereotypically male: construction and farm machinery, video games, computers, and design.
As a small kid I did engage in some imaginary play but it was not as advanced as that of most of my peers. I can however easily get immersed in video game or movie stories to the point that it can feel like I’m a part of the story and what’s happening in it is happening to me.
Both yes and no. I hardly talked as a kid, but was able to learn English as a second language (with no prior knowledge of it) in only a couple of months at age 9. I am now able to speak English better than a lot of native speakers and scored above average in most high school English classes.
I did learn to read early but then got tripped up by how it was taught in school, and couldn’t progress for a while.
Faking Through Imitation:
I never felt the pressure to be socially adept and never learned to imitate. I’m not sure I could have learned it either. I’m still absolutely terrible at socializing.
For most of my life I had a group of friends around a special interest. I often had gateway friends and my brother also often served as a gateway into social groups. After moving about a decade ago I couldn’t find people with the same special interest as me and stopped having friends at that point. I don’t have any friends now and don’t miss them either. Interestingly, I am more social than my girlfriend.
I do not enjoy socializing itself. I enjoy doing special interest related things with people. I also enjoy larger groups more as I can fade away into the background until something I’m particularly interested in comes up. It also means I don’t have to get to know any one person really well.
Invisible Social Difficulties:
My social difficulties are obvious in any situation. The only reason I was successful in having friends was that the friendships were based around a special interest and I was valued for my knowledge.
I was never diagnosed with any conditions. As a teenager, I probably would have been diagnosed with depression. I experience social anxiety on a regular basis.
Hi! Thank you for answering in such detail. It’s interesting that you enjoy larger group activities. It’s not often that I hear someone on the spectrum say that, but I definitely see the advantage of being able to disappear into the crowd as needed.
What you say about only being successful at making friends around special interests and being valued for your knowledge is a textbook pattern of socializing. I’ve always been much the same way and sadly sometimes when I move on from a special interest, the people I met through it suddenly seem completely uninteresting and I can’t remember why I liked them so much. That sounds kind of awful, but there it is.
Wow. That article pretty nearly stole my breath several times. Just. Wow.
There are several things that are so ‘Oh, that’s me!’. The imaginative play, writing fiction, reading voraciously, playing out sections of a movie or book – I play out parts of my books in order to get them figured out sometimes. Being in my own world, vivid imagination; I have so many scenarios in my head from fan fictions and books I literally can’t write them all down. Just, wow. As far as having a diagnostic model specifically for girls, I think it would help eliminate the underdiagnosis of them, and that would help them get the help they need.
Thank you. So happy to hear you could see yourself in those traits. I think it’s validating for girls/women to have a set of modified criteria that they could feel fit themselves more accurately than the traditional model. It might lead to spending less time questioning whether we’re really that autistic. 🙂
Ah, let’s see.
As a young kid, I latched onto the tv shows I was allowed to watch (I fantasized about the characters and memorized lines and songs, etc.) When I hit junior high, I latched onto old movies in the same way and became an expert on the work of various directors. Sometime after college this movie special interest/obsession stuff creeped me out a bit and I recognized that it creeped other people out, and I stopped, and transferred it to tv shows again and more recent movies, which in the Internet age seems to be practically normal. I also latched onto historical time periods (mostly in the early 20th century), and have utilized those special interests for the writing of novels (unpublished). During the past year or so, I’ve given myself permission to get back to old movies, and it’s like I’m reunited with a long, lost love. I also glom onto the work and careers of particular actresses. Lately, I have my sights are on Annabeth Gish, of all people, because Entertainment Weekly did a reunion story on the cast of Mystic Pizza. I remember being intrigued by her in the late 80s and early 90s. I also can have special interest in nutrition and health.
Yes, I have an active imagination, but not for building science fiction adventures, but for reworking scenarios and changing plots in my mind. In my mind, I was creating fan fiction before such a thing even existed. Definitely to escape from reality.
Verbal / hyperlexic
Yes, definitely. I didn’t learn to read early, but I am a big reader.
Yes, I’ve tended to have a couple close friends, and then a wider group of not as close friends that I enjoy in small doses.
Yes, I enjoy socializing with groups of people I genuinely like and am interested in. I can be “on” for a limited time, but if the dynamic allows me to listen to others I last longer. I’m learning about the whole recovery time thing, and yes, that applies to me. Any other social settings, blech, I don’t want to be there or stay long. I usually find one person and have a conversation off to the side.
The social difficulties of autistic females may be more difficult to spot.
Yes, I do well in male dominated environments. Often in female dominated environments, I feel like I’m playing a sport and no one gave me the proper equipment. I do better with women one-on-one. In groups I sometimes feel out of it.
Coexisting conditions are common in autistic females
Well, I was never formally diagnosed, but I definitely had some OCD going on in junior high into college, which I think was linked to anxiety, again not diagnosed. Selective mutism — I just looked that up. When I was in college, I talked and talked and talked, and when I brought a friend home with me for Thanksgiving, she couldn’t believe how little I talked among my family. I’ve definitely got that going on, although it took someone else to point it out to me.
I am able to play the social game very well, but it’s work for me, and I definitely need to decompress afterwards. I kind of doubt that I would get diagnosed unless it was by someone who is very knowledgeable about autism in women and the person spent a long extended period watching me, or watched me under stress. Much as I’d like to have a formal diagnosis, I am very reluctant to go through the process because I think it would be very frustrating and futile.
This blog has been very helpful to me. I’ve learned so much, and everyone’s comments have been so insightful and informative.
Fandom has indeed made obsessive special interests in TV seem totally mainstream. Or I just have a huge number of autistic people on my friends’ lists. Hard to say. 🙂
It sounds like you’ve become very good at passing which can make it extremely hard to get diagnosed. You also make a good case for some alternative form of diagnostic process because so many of us instinctively pass and can do so fairly easily during a short evaluation. It’s only when people take a closer look at all the “cracks” in our lives that it becomes obvious that something is going on.
Yeah, that’s like when I ranted about being so incredibly well trained in doing job interviews, because I’ve lost my job so many times. An interview, even when it’s not for a job, automatically triggers my “interview” script, especially in how I interact non-verbally. Have an upright posture. Keep your hands still. Don’t look down. Nod and smile a lot. It’s nearly automatic by now, after – at a guess – more than 70 job interviews. So yeah, a diagnostic interview is NOT the best way to assess whether I’m autistic or not.
Yes, yes we do! We must be sharing the same brain this week because I was just working on a similar article for answers.com LOL
It wouldn’t be the first time we were sharing a brain! 😀
About your article: YES. Everything. All of it.
1. Special Interest – I am obsessed with music and I hope someday I get to work in the music industry, although not as a musician. However, I don’t consider my favorite genre to be typical of my peers, so I actually adapted. If someone I’m not close to asks what music I like, I give them the name of a mainstream rock band or pop star that most people know about. If I’m speaking to a close friend, though, I tell them that I like a lot of underground music and heavy metal. The Internet has made it very easy-too easy- to collect information on my special interest. Even with TV it’s the same way: if I’m not watching the show, I’m reading recaps and spoilers, so I might still be able to talk to someone who’s actually watched the series about it. if it were up to me, this would be my life 24/7, but I’ve had to balance it with other things in life.
2. Active Imaginations – Check.
3. Verbal/Hyperlexic: Maybe. I love to read. I don’t talk much but I’ve always felt that the guy version of myself would be quieter than me.
4. Faking Social Interaction – Yes. Before I transferred to my high school, I was a quirky artsy type who said the weirdest things. My new high school was rough, sure, but looking back, I learned new communication tools just by trying to imitate how other people talked. I would never have been able to do this if I didn’t transfer schools.
#4: I should add that my high school was the first school I’d known about where everyone placed a higher value on social currency than on academics, and I had to re-adjust.
The internet has been a godsend for researching special interests. As a kid I loved the library for the same reason. I can only imagine how much time I would have spent looking stuff up on the internet. 🙂
Reblogged this on Invisible Autistic and commented:
Thank you for the reblog 🙂
Great post and so many great discussions (as always!)
For me this brings up the same issues that are constantly rolling around in my head- Is diagnosis for something like autism as changeable as our society and culture?
Its very confusing that diagnosis is so dependent on traits rather then causes, and super confusing that it is so dependent on who’s diagnosing you, if you’re having big enough problems to be diagnosed to begin with, what kind of issues may come up for you if you are diagnosed at an early age and gain limitations from attaching a label to your self identity! In fact, self identity in general seems to be a big factor in diagnosing, I have no idea if thats a good or bad thing?
But yeah, as a few others have said, it seems to me that surely diagnosis should be made based on cause rather then traits (so figuring out how much a trait is based on something like sensory issues rather then say poor parenting). I’m also aware of how co morbid and complicated that kind of thing is!
But, there seems to be a lot of traits in autism that still havent been figured out or even looked at/separated. What separates socially awkward NTs to socially awkward Aspies? Why do Aspies tend to have intense special interests? Who on earth is saying that autistics have a lack of imagination?!
I know so many people on the spectrum in real life and they are all vastly different, all with different ‘traits’, some who have no visible traits at all, and I expect as adults wouldnt be diagnosed.
Having a psychotherapist for a Mum makes me question these kind of things in other ways too, her spin on AS is very different to that of a doctor who might diagnose. Shes a huge believer in environment affecting you even before you are born. I’m pretty certain now that I would be diagnosed as autistic if I went to a doctor, especially if I had gone as a kid, but my Mum would certainly put all of my traits down to being in an incubator for my first few months rather then to it being in my genes and something I born with, and not fitting with her idea of ‘autistic’ (that you are born that way and have not been ‘rewired’ to be that way) So in terms of traits it seems to be completely down to personal opinions…
So yeah, to me it would be interesting if in the future people did many more studies on causes of traits rather then the traits themselves, and then create criteria based on this? If a diagnosis was created based on cause as well, it might mean that you could figure out more easily how to make someones quality of life better too 🙂
There are still so many issues that need to be worked out around diagnosis. Some people even say that ASD shouldn’t be in the DSM because it’s a neurological rather than psychological or psychiatric diagnosis. And we’re still stuck with so many of the early ideas about why traits happen, which formulated before things like executive function and sensory sensitivities were clearly understood. So yes, a model based on a new approach would be very helpful in bringing diagnosis into the 21st century.
I would argue that executive functioning and the lack thereof are still not clearly understood. My own pet idea (verified in studies with ADHD) is that there is some connection between perception of time (I have essentially none) and executive dysfunction. It is known on a gross anatomical level that executive function involves several brain centers. It would be useful to be able to manipulate it somehow.
I think time agnosia is a recognized part of executive dysfuction. At least I hope it is because I recently wrote something that says it is. 😉
It’s so hard to “fix” EF issues. I’ve resorted to building a sort of exoskeleton around mine as a work-around because trying to change how I function in that area always makes me end up feeling bad about myself.
I think part of the importance of an autism diagnosis is recognizing certain things cannot be fixed and need what you call an exoskeleton.
Now I kind of feel like a superhero. Ironman is basically an exoskeleton, right? 🙂
I loved your article and absolutely think it applies to me. I’m the third child of three, the older two being boys. I was a tomboy growing up, and this caused a great deal of consternation for my mother, who longed to dress me like the girl she’d finally got. I still consider myself genderqueer in the sense that although I dress “feminine,” it’s only because I figure people can understand me best that way, not because I truly feel female. I was reading and drawing in perspective by 4. I was obsessed with horses and could name every breed. By kindergarten, I was in an experimental writing class that used the international phonetic alphabet, but I could already write ordinary English. I remember in first grade, writing words in proper English, thinking I’d impress my teacher, and getting reprimanded. I learned that day to hide my differences and channel my energy into things like penmanship. I am ambidextrous but made a concerted effort to write with my right hand, since that’s what everyone else did. In short, I did everything I could to “pass” early on. I have always had close friendships but ONLY in a one-on-one context; I can’t handle small groups of friends, even to this day. Anyway, I think we diagnose boys based on their tendency to act out, but miss girls who deliberately conceal their differences and sustain relationships. Now I have three kids, two of whom are on the autism spectrum (girl-boy twins)–big shocker, LOL.
I was a tomboy too and am only just now getting comfortable with how I experience gender. I’m still not sure how autism factors into that, but it seems like it might. Still exploring.
It’s interesting that your efforts to pass included things like writing with your right hand (which was a big deal, back in the day) and avoiding looking too smart. Being perfectly average is probably the best way to go unnoticed, isn’t it?
Hi. I think all of these are true for me and I definitely think that both girls and adults should have separate diagnostic criteria. One thing I have to point out is that I was the extremely “shy” variant of Aspie child, which means that even some of these female-specific criteria were hard to spot. Special interests, hyperlexia, and active imaginations are hard to see in children that rarely ever speak. For example, my special interests were not odd on topic as you mentioned (they were usually centered on TV shows or book series or specific characters), but I (somehow?) was aware that they were more intense than other;s interests. I was embarrassed about that fact and wary of sharing my interests with others (even my family…actually especially my family since my brother was the type to tease me for such things), so I explored my interests in the privacy of my room. The same was true for entering into my imaginary worlds. My family will say that I spent a lot of time alone in my room as a child, but they didn’t know what I was doing in there.
Another thing that diagnosticians need to consider is how observant to autistic traits the parents are, or more importantly “were” if you are talking about an undiagnosed adult. I am certain that my lack of any sort of diagnosis (the term Asperger wasn’t in use when I was a child), was due to my mother’s failure to notice my autistic traits. For one, I was kind of lost in the busyness of a crowded home and the stresses of raising a family on minimal income. Secondly my mother may be Aspie herself, and usually didn’t notice when I was overwhelmed or distressed, and often couldn’t remember my favorite things/past-times/interests apart from my siblings. She could never seem to remember my favorite colors, foods, toys, or music. She’d serve me butter noodles instead of regular spaghetti, because she couldn’t remember that my sister was the one who didn’t like tomato sauce, not me. When my sister and I got matching clothes or toys, I’d get a pink set and my sister would get purple or blue or green, even though I repeatedly said I hated pink. “I thought you liked pink,” she would say. One time, when I showed interest in wanting a specific toy on a TV commercial, she’d end up getting it for my sister instead because she couldn’t remember which one of us wanted it. I believe she also missed my hyperlexia. I recently asked her how old I was when I started reading because I was curious about whether I was hyperlexic. Her answer was verbatim “I don’t know…maybe first or second grade…?” I can clearly remember being able to read while in Kindergarten, and being surprised that some of my classmates couldn’t, but my mother can’t remember that. Maybe she never noticed in the first place.
It sounds like you grew up in a chaotic household. If you mom was on the spectrum, it would make sense that the stresses of raising a big family on little income plus the usual parenting challenges might have made it hard for her to cope. I can also see how a really quiet kid might get overlooked in a big family if the other family members were more social or demanding. It sounds difficult and sad and lonely. 😦
1 special interest look different in women
A for me it is dolphins. I collect anything dolphin related including soft toys and my singing
2 do girls often have active imagination
A I find it hard to do. I find it hard with drama especially acting non existent stories. I try and opt out of drama.
My imagination I can draw dolphins as I learned to visualise them as I would copy them as a child.
3 autistic girls maybe verbal/hyperlexic
A not for me, I was a non verbal child who needed lots of speech therapy to help me communicate.
4 faking social interaction through imitation
A I do not imitate other I was taught life skills by people especially when I’ve come across and still appear vulnerable to abuse… I want to be able to interact and although I seem and appear quiet especially around new people and groups I still easy target for abuse/bullying.
A this is something I struggle with right now. I am often the target of bullying and abuse and cannot tell who is genuine and who isn’t
6 enjoying socialising
A I wish I could and not be so so quiet, even when go to my groups I hang around the same area but I have limited socialising . Someone goes ‘ hi how are u’ I go ‘I’m okay’ that’s the conversation that can go really. I prefer talking 121 than being in a group where it makes me more anxious
7 difficult to spot social difficulties
A looking at my reports I can see it’s noticeable but just couldn’t work out what was wrong with me
8 co exist conditions
A yep. I have a moderate learning disability, others mark it down as mild but my ed psych reports said I am moderate and went to a school for pEople with moderate learning disabilities. Dyspraxia although they said I grew out of apparently u can’t u just learn how to cope with it , emotional unstable personality disorder I feel does not fit me accurately and an undiagnosed PTSD from the abuse I’ve suffered over the years
It’s important, I think, for us to remember that there are many girls who also fit the traditional model or have a mix of traits. It sounds like maybe your autistic traits are closer to the traditional model but your autism was initially overshadowed by your learning disability diagnosis? I’m guessing based on your answer above, so apologies if that’s an incorrect assumption.
I think you’re right about learning to cope with (or ignore?) dyspraxia. It’s definitely not something you grow out of. In fact, I seem to be getting more dyspraxic with age at this point. It’s so frustrating to hear people say that we outgrow our autistic traits.
I find I’m more autistic living alone as I have more meltdowns especially when having to deal with companies that don’t understand me. I do however have extra support so I don’t have to go through this.. I nearly was fooled by a company who I thought was really them to find out there not
Hi Flippsie. You sound much like I did in my younger days. I used to think I didn’t have an active imagination since I could never seem to be creative when I was expected to, like on a school project or something. But I realized my creativity is limited to my own interests. I can’t decide to be creative just to be creative, but my mind will be creative of its own accord, somehow, if it finds something that fascinates me. Also I had a hard time imitating social interaction for a long time. Until then, I had selective mutism in many situations. I just didn’t have the skills to perform so I couldn’t engage in social interactions, even though I wanted to. I also had a hard time spotting “true” friends from ones who take advantage of you. I was very naive and easily fooled and taken advantage of. I was teased and bullied relentlessly. But after many years of careful observation and thinking and practicing, I can do a lot of those things that I couldn’t before. I don’t know what stage of life you are in now, but finding true friends during high school and younger is really really hard because kids tend to hide their true selves (sometimes even from themselves!) during that time. At that age people want to fit in, so everyone ends up acting the same, and their true selves may not even be developed yet. There is much less of that in adulthood. It doesn’t go away completely, but you get better at spotting “true” friends from bullies, and at the same time adults are more comfortable revealing their true selves to you. Over time you learn more and more conversation skills and it becomes easier to “act” in most social situations that you encounter.
I have an autistic daughter and really appreciated your articles. We actually went through four so-called specialists before we were able to find someone to diagnose our Little Miss — for exactly the reasons you outline in your post (“she has imagination,” “she is too social,” “she can talk”). Yes, our Little Miss is and has all those things — but as the specialist who diagnosed her told us, “she is clearly autistic.” She does seek out social interaction, but is unable to sustain it (especially with peers). Prolonged social interaction also puts my daughter into a shutdown mode (or if she’s unable to shutdown for some reason, a meltdown). She does have a fine imagination, but uses it almost exactly as you describe in your post (escape, scripted story lines, etc.) — and she absolutely does NOT share her imaginative play with anyone else. So many of your other points hit home too — multiple diagnoses (she has epilepsy, SPD, a feeding disorder, and fine/gross motor delays) — and even at age 5, she has learned appropriate scrips to mask some of her difficulties.
I truly wish more specialists were aware of the differences between boys and girls on the spectrum. This is a great topic to pursue and I sincerely wish you the best with it. You’ll have my contact information from the comment if there is anything I can do to help!
I’m so glad you stuck with it and got your daughter a proper diagnosis. Except for the epilepsy, I’d venture that all of the other dx’s are actually part of being autistic. I don’t know any autistic people who don’t have traits of SPD or fine/gross motor coordination issues (and when you’re in your 40s it’s no longer a delay – LOL). Even the feeding disorder could either be sensory sensitivities or a motor coordination difficulty. It’s so frustrating that autism is primarily diagnosed based on social skills.
Okay, I’ll stop now before I go on a rant. But your daughter’s situation is just a classic example of why girls have so much trouble getting diagnosed correctly. Thank you for sharing it here.
What do u mean overshadowed by my learninf disability. When I was 4 I was diagnosed with speech delay and learning disability, dyspraxia age 9, clinical depression age 12, age 14 autism, 17/18 adjustment disorder, 19 bpd and last year rediagnosed as having eupd
What I meant was that autism is often overlooked in girls and women if clinicians can come up with another “more plausible” answer for the difficulties someone is experiencing. Speech delay, learning difficulties and dyspraxia traits all overlap with autism traits, so if the person(s) diagnosing you decided that those were better explanations than autism, it could contribute to why you were diagnosed later in childhood with autism (as opposed to many children who are diagnosed in the preschool years). I hope this makes sense. I’ve written an article on this AWN that’s coming out next month and explains it in much more detail.
Great article! It may be superfluous for me to chime in at this late date, but for the sake of research I always err on the side of too much, rather than too little, data. The question of having Asperger’s arose after I took various cognitive assessments to identify why I was having difficulties at work and college; the tests indicated the wide gap between cognitive ability and processing speed like that which was originally noted by Asperger. Taking this into context with my social anxiety, I was subsequently identified by two therapists as likely having Asperger’s /HFA. (I can’t afford to pay for a full, “official” diagnosis.) I shall follow the lead of others and address each topic in order:
Special interests look different in females.
I have always had a mix of “typical” and “atypical” interests. For example, at age four I was obsessed with dinosaurs and paleontology (something generally considered to be a “male” interest). At five and six, I added interests in horses (common for females) and ancient Meso-American cultures (uncommon for most people of any gender in the middle of the US!). Over the years, my interests were often very intense and specific, and geographically remote from my own location (Colorado): American colonial history, for example. If I developed a “typical female” interest—dolls, for example—that interest was not extended to all dolls, but only certain ones which had ties to another interest (a preferred historical period, or a culture of interest), and while I occasionally acted out stories with them, I preferred to create and arrange period-appropriate material culture “artifacts” to add to their worlds. In order to do this, I researched these topics in-depth, reading professional anthropological and archaeological journals as well as more accessible references. Some interests were therefore advanced for my age, while others (such as the dolls) developed later than in other girls and persisted long after they were considered to be age-appropriate.
Girls and women often have active imaginations.
Definitely! I used to entertain myself on the playground by making up stories about things I imagined or observed. I retained imaginary friends through middle school, although I always recognized that they were imaginary! I viewed them as alter-egos—versions of myself which could be more assertive, more likeable, more “normal”…or conversely, more awkward than myself. They allowed me to perceive my own personality more objectively. And I spent many hours imagining myself in the context of other cultural or historical environments, seeking a situation in which I could be more acceptable.
Autistic girls may be more verbal or hyperlexic.
I read well in advance of kindergarten. By first grade, I read at a high school level. Always considered “eloquent” on topics of which I am knowledgeable (although that eloquence frequently dissolves under social pressures, even to the point of mutism).
Girls and women may be better at faking social interaction through imitation.
Definitely! I often take on the vocal inflections, dialect, and facial expressions / gestures of the people with whom I am interacting. This is largely an unconscious act now, although I remember putting very deliberate effort into it as a small child. Being in a group of people is strenuous, because this “chameleon” behavior means I am constantly changing in order to respond to each person within the group. I often wonder why this isn’t obvious to others. Perhaps people like to see a reflection of themselves—it makes them more comfortable? Of the few times someone has noticed and pointed out this behavior, it is usually the result of being abroad: no one expects an American girl to have a British accent!
Autistic girls and women often have friends.
I do have friends, and have always had friends—although never more than a few at a time, and even then, I have had the distinct feeling of being a tolerated outsider, rather than someone who is truly understood and accepted. (This feeling has lessened with a few of my adult friendships.) I have always found it easier to be friendly with individuals much older or younger than myself. And as a younger person, I often considered anyone who was kind to me to be a “friend”—my husband later taught me the difference between “friend” and “friendly acquaintance.” My trust in others is often misplaced because of my failure to recognize this distinction, and to understand that not all apparent kindness is well-intentioned.
Autistic girls and women often enjoy socializing.
I enjoy discussing favorite academic subjects with like-minded individuals, and I can bear to go for coffee occasionally with other friends, but my stamina for such activities is quite limited, and I usually feel “spent” for many hours or even days afterward. Now that I am older I know to limit the time I spend in social activities, and to meet in places which aren’t overstimulating—where the lighting is soft and the atmosphere quiet. I have also learned that it is acceptable to let others know when I am overwhelmed and need to leave; until recently, I assumed that it would be impolite to leave before others did, and often suffered meltdowns when I finally was alone again.
The social difficulties of autistic females may be more difficult to spot.
Because of the cultural pressures on females to be sociable, I think girls are often more likely than boys to recognize that they need to adopt social skills, and they model their behaviors after others they perceive to be socially adept. In my case, I viewed my mother as someone who was socially successful—garrulous, expressive, confident, and adept navigating the emotional landscape of any interaction. As a child, I spent hours in front of a mirror, imitating her facial expressions, her vocal inflections, her gestures, expecting that by doing so, I would eventually understand the thoughts and emotions behind those visible manifestations. When I have to participate in a conversation and don’t know the other person well, I “become” my mother, invoking her tone of voice, her facial expressions, even the phrases she uses in small talk. To most, I seem to simply “take after” my mother. But in reality, my lack of confidence in social situations, my preference for solitude, and my inability to measure the emotional climate of interpersonal exchanges are more similar to my father’s personality. But my father rarely spoke, and I hardly ever saw him in social settings outside family events, so his behavior was not a practical option for me to emulate—it did not offer me the solutions I sought as a female trying to engage with others on a level of sociability which was culturally acceptable.
Coexisting conditions are common in autistic females.
Have also been diagnosed bipolar; ADHD; chronic depression; selective mutism (at varying stages of my life).
Thank you for adding your experiences. It’s never too late. I still get comments on posts that are over a year old and searchers are always finding older articles and reading them, according to my blog stats.
It sounds like all of these fit you quite well and the therapists who said you are likely on the spectrum recognized the differences in girls/women. I think the /cognitive/processing speed gap that you mention is actually great indicator of ASD and one that is pretty universal across age and gender. It could make a good confirming factor in diagnosing, though it isn’t explicitly mentioned in the diagnostic criteria.
I have wondered frequently why the cognitive / processing disparity patterns which are so frequently present with ASD are not included in the diagnostics. Especially since they were noted by Asperger himself, and suggested as one of the causes for many of the other “symptoms”. Obviously, these patterns do vary a bit between individuals, but it would seem that learning abilities are more directly tied to the genetics than some other aspects of the diagnostics, which can be affected by the environment in which you are raised.
I should add that, unlike many kids, I had a pretty stable, “easy” home life, with lots of family support, which allowed me to develop social skills which individuals in more tumultuous environments never have the opportunity to acquire. So I do think our social environment as children can affect the degree to which our difficulties seem pronounced. That isn’t always an advantage: people are less tolerant of me when I assert that I cannot deal with particular places, or people, or stressors, because “everybody else can deal with it” and I seem to be as capable as they are. But my limits are just as real as those of others with ASDs, and in some ways, having fewer emotional stressors as a child means I am less adapted to dealing with them as an adult.
“I have wondered frequently why the cognitive / processing disparity patterns which are so frequently present with ASD are not included in the diagnostics. ”
Good point. I would think this is not so difficult to measure ‘objectively’ as many other things.
Me too! Especially since a big part of my ASD evaluation involved cognitive testing and the results showed the expected disparities. I think a lot of clinicians use cognitive/processing disparities in practice for diagnosing, even if they aren’t part of the diagnostic model. Which they should be, because there is plenty of research to back up their inclusion.
My interests were mix of stereotypically male and female: dinosaurs of course, which lead to paleontology in general, then also archeology, anthropology and psychology in later years. I practically learned reading on encyclopaedias of animals. In my early school years I had a short period of fascination with cars in which I could name more cars than any of my male classmates together with some technical specifications. But there was also strong fascination with music that never really passed – music helps me understand and name my feelings, something I otherwise have troubles with. I love learning languages although my synesthesia may get in the way when feeling/taste/colour of some words is stronger in my head than the actual meaning. I learned to speak pretty fast, I didn’t gurgle though.
I’m not only pretty OK at faking social skills, I’m also an avid roleplayer, which might also proove my imagination. It’s actually pretty easy when I have my character’s chart and I can build every reaction on some basic facts. This works just as well in situations I feel confident – I can always prepare a “character’s chart” for myself in a certain situation and act accordingly. I use my hearing more than sight to pick up some clues about other people’s reaction and when I have to choose between let’s say: they’re sick, sad or on verge of hysteria, I choose the most probable explanation. I might also pick up someone else’s pattern of speech if I have an impression it would make our contacts easier. But all of those skills are useless when I face a new or unexpected situation.
I don’t really socialise for the sake of socialising although I love exchanging opinions about my favourite subjects. I don’t even mind something that seems like a serious arguement as long as the other person does provide good points and their opinion seems legit. It must be a 1:1 conversation though, the more people the hardest it gets to focus.
I might say I have friends but it’s more like having one person to become my special interest for some time. When that happens, I learn everything I can about them and I would do practically everything for them. At the same time I might seem extremely unfriendly to them – at least that’s what my girlfriend once said (funny thing – when she got to know me better, she was the first person who suggested I might be autistic). Because of that I wondered if what I really suffer from is BPD but finally decided there’s no ambivalence in my feelings, I just don’t know how to show affection.
During my school years I wanted to make friends with my teachers/tutors rather than other students because I didn’t really look for comfort or company but a partner for intellectually stimulating conversation. Therefore said teachers never spotted anything strange about me because I talked with them almost as an equal. I also gained some kind of popularity as someone who isn’t afraid to proove teachers wrong when they really were wrong, so even if I wasn’t the center of social life I avoided really harsh bullying.
I’m diagnosed with bipolar disorder and I do believe it’s true.
Thank you for adding your voice to mix here. It’s been so cool to get to know everyone a little this way.
Having a character chart for yourself in certain situations is actually a great social workaround technique. And like you, I use pattern recognition for social situations, which works much better with people I know a little bit versus total strangers. Faking social skills is a really haphazard process at times.
I can’t help but want to share; I remember looking over your blog when I was thinking about self-diagnosing/seeing someone about this, and it’s always fun to compare/contrast with other people:
Special Interests (more girl-like and normal?): More normal? Yes; more normal than, say…washing machines. General areas have generally been, like, literature, history, anthropology, philosophy versus math or physics or computers. I did have a stage where I was obsessed with Medieval weapons, and I was also obsessed with codes and code-breaking for a while, and World War II, and I love science and science fiction and especially old science fiction and archaeology, and I’ve had a lifelong obsession with the evolution and biology of sensory systems and evolutionary theory and mostly, the weirdest thing about my special interests is that I’m interested in basically everything ever except all the things I’m supposed to be interested in. Currently I research/read about literary theory and disability studies and neuroscience and evolutionary-developmental morphology…and anthropology sometimes…and I work in an organic chemistry lab. For fun. Good lord. It all seems normal in my head, and then I re-read it…
Active imagination: Both very much yes, and very much no. I am not literal (usually). But I’m very bad at most of the tasks people usually believe give signs that someone is creative. If someone is like “Come up with a new idea! Go!” I’m like “No. I don’t do that.” And if someone asks me like “Doesn’t that cloud look like a rabbit?” I’ll probably be like “No, it looks like a cloud.” But I’m considered very creative and off-the-wall. I think it’s just that I think outside the box–or so they say. I’ve never found the damn box, though, and I’m starting to think that maybe the only unusual thing I do is just think…period. NT people have this thing about boxes. I don’t get it.
Verbal/hyperlexic: Guess. Seriously. Just guess. After the lengthy two answers I’ve given so far…But with a caveat: Hyperlexic, and verbal (text-wise) but I don’t actually think in words at all, and have a huge amount of trouble with verbal fluency and sequencing. Hyperlexic hardcore though. I still have the creepy read-aloud abilities too; I can read aloud extremely fast, with proper prosody and intonation and everything, without comprehending a thing, even in other languages, as long as someone teaches me pronunciation. Spelling was another special interest in school. I went to a Montessori school (a blessing, I swear) and I’d literally do spelling tests and reading comprehension tests for fun, over and over and over. I absorb text information through osmosis, basically.
Imitation: YES QUITE. Though for some reason I never had much of the inclination or forethought to use this to become more socially adept…It’s just a weird knack. It runs in the family, actually; on my mothers side, everyone can mimic like crazy. I also know that I have large parts of my mannerisms and personality that are precisely other people and/or movie characters. I have characters that I am in certain situations, and I’m comfortable if I can be a character, but not if I have to be myself; in most academic situations I tend to basically parrot West Wing characters.
Friendships (some, atypical, with older/younger girls): Yes. I’ve always joked that I can’t get along with anyone in my actual age group; always older or younger. And I did the thing where I either played animals with girls who were littler than me, or was adopted by groups of older girls who thought I was cute and awkward and smart and wanted to keep me as a muse/pet of sorts. And the rest of my close friends (all three or four) have all been women/girls who are also on the spectrum to some extent; I can only really get along with mad scientists and mad artists, as a rule.
Enjoy socializing: God, no. Well. With like one person. Or when I’m teaching. I don’t know if teaching counts though. To me it does. I have an Aspie parent and he’s the same damn way; we love people when they come to us with specific questions and problems and issues, or if they want to have some one-on-one deep philosophical discussion…but otherwise absolutely not.
Social difficulties harder to spot: Meh. I get a lot of the “You can’t be autistic, you’re so nice and sociable.” Which is usually annoying, because it’s often said in a situation where it’s like…not practical or acceptable to not speak with people. Like, at the doctors. I will probably talk to a doctor if I have to see one; if I didn’t want to speak with a doctor, I wouldn’t go to the doctor. Additionally, I love talking to people about my special interests, but I tend to infodump. See above, and such.
Coexisting conditions: ADHD. Intensely. I got that diagnosis first. Think it masked a lot of the other stuff; I didn’t really have the attention span to infodump before I got medication, and I wasn’t able to do at all well in school either. It gives it’s own…flavor to autistic-ness, I think. And anxiety, and PTSD, and so on, and so forth.
I’ve heard other people say that they’re interested in everything except what they should be or in things that are the exact opposite of what one would expect them to be. Our special interests really do seem to choose us. I have zero explanation for most of mine.
Oh, and I just recently realized that I’m both hyperlexic and a visual thinker, which is a strange combination. I do a tremendous amount of translating in my head between the way I think and getting stuff into shareable form (words). Good to know someone else has a similar process.
Just want to say, I am really enjoying this thread!!! I wish I knew every one of you personally (especially since I know none of you would be likely to call “just to chat”!). You all sound amazing and it is great to hear from others whose experiences are so similar. (Especially after being called “weird” all my life!)
On the last comment, regarding the translation process between visual thinking and hyperlexia, I can definitely relate: I often find that ideas and concepts exist as very clear and detailed images in my head, and I have to break the image down into multiple parts and tie each to the appropriate set of words in order to explain. This takes a lot of time! And often I can only recall part of the correct word at first, such as the Latin root, and I have to run through a series of related words in my head as if I am scanning a dictionary page, and break down each of those to determine whether the word is correct or not… too time consuming for casual conversation!
The visual aspect pays off frequently in research, however, (mainly historical) because I can visualize exactly the context surrounding a person or event, as if I am conducting an archaeological excavation, and I “know” where to look for the next bit of information based on the surrounding context.
That sounds a lot like my thought process Emily. I seem to do “well” in a lot of social situations because day-to-day things are routine. They are practiced and memorized and then performed when I need them. But when I face something new, I can’t figure out what to do or say quickly enough. The thought process takes too long so that I might not figure it out for several minutes, sometimes hours or days, after the conversation is over and its too late to say or do anything. If it comes to something serious, like having to negotiate a loan, or a meeting with my boss, I have tremendous anxiety about whether the “performances” I have in my repertoire are going to be able to cut it. If they can’t, which is often true, I’m likely to screw up or at least fail to communicate appropriately enough to get the right type of loan or provide my boss with the info he needs. On top of that, I have the emotional range of a 7-year-old. A lot of my concentration goes to trying not to cry during the encounter, which I have done from time-to-time when I am really overwhelmed with the situation. Like you, I had an “easy” home life as a child. Aside from enduring bullying, and my parent’s lack of attentiveness to even realize I was being bullied and to put a stop to it, everything else was pretty easy. I had lots of siblings and cousins to be my “friends” and help socialize for me. I didn’t even try to make friends at school because I knew I didn’t have the skills, but also because I was satisfied with having my siblings and cousins as my friends. I didn’t think I needed to make any more friends. Everything was done for me in one way or another so that I had few worries. Then when I reached a certain age, I was just expected to “be an adult.” I was suddenly on my own with very few adult skills. But just because I have done well academically, everyone thinks I should be able to just do everything an adult does. I can’t make them understand that earning an advanced degree in one subject doesn’t automatically make me an adult. All I hear is “we all have stresses” and “we all get through it.” But you wouldn’t expect a 7-year-old to have to manage everything that I manage, and essentially that is what I am when it comes to emotional range and interpersonal relationships, a 7-year-old. I never developed beyond that because I didn’t have to until adulthood, and by then I was too far behind to catch up. It frustrates me that no one can understand this.
The way you store information sounds very similar to my own storage system. I have a web of information and often have to hop from one concept to another similar concept to access the one I actually want. It’s both very useful and very cumbersome. 🙂
About what Emily (and others) were adding about the hyperlexia-plus-nonverbal-thinking combination:
Good god, the context thing. I have this theory about the difference between (most) NT people’s global thought process and between my (and potentially some other ASD people’s) thought process, and it has to do with like…thinking in terms of “objects” versus “environments.” A lot of the very smart NT people I know are very good at isolating “general ideas” and then organizing them in a way that treats ideas (and words, and most things) like discrete, individual objects which can be sorted and put in drawers and such. But I remember information in the form of nonverbal (and often, non-visual) environments, or contexts, as if each “topic” or “word” is simply one location/perspective within a whole giant web of everything I know.
I’ve found that in many cases, this results in huge amounts of trouble figuring out how to verbalize and communicate my thoughts, but then corresponding advantages in detecting contextual irregularities/gaps in different people’s research, and in synthesizing large amounts of information. When there are confounding variables in experiments, it just seems absurdly obvious to me. And I also can’t stand people using very general terms without defining exactly what they mean by them. Like, “abstract,” or “conceptual,” or “cognitive” (a few pet peeves); those words’ connotative contexts are, in my head, so diffuse and vague that if you use them without explicitly defining what you mean, they’re basically nonsense words.
I think about things in such a way that there is literally no differentiation between a “concept” and the relations/associations it has with “other” “concepts.” Which means that in any thought process I have, the things I’m thinking about are like ten times more contextualized than they ever are for most NT people. I often have problems answering general/vague questions because of this: When people are like “So, tell me about what you’re working on,” they might as well have said “So, could you explain your entire worldview?” Everything’s so connected and mutually contextualized that I can’t never easily distinguish between whatever I’m “currently working on” and my other knowledge.
I also totally get the “hopping across the web to find things” thing. On the WAIS IQ test I took for my first neuropsych. evaluation, there was an “Information” question that asked “Who was/is Catherine the Great?” And I missed the question: I got Catherine the Great confused with Eleanor of Aquitaine, because in the movie “The Lion in Winter,” Eleanor of Aquitaine was played by Katherine Hepburn. Obviously my brain has it’s own (very strong) opinions regarding who the greatest “Catherine” in history was…probably because “Lion in Winter” is a great fucking movie. And once, during the Q&A session after a seminar on battery chemistry, my friend asked about one graph of the results of a long-term battery performance test. The presenter was having trouble figuring out what my friend was referring to, so I chimed in, trying describe the graph in question…and I blurted out “It was…pretend car!” This was very confusing to most people at first, but not to my associative, spectrum-esque friends. I’d absorbed all of the industry context the presenter discussed so intensely that when I saw a graph of a (generic) battery stress-test, I thought of it as a literal electric-car simulation. A pretend car. There are a lot of different ways to be “concrete” or “literal” in the way you use language…My was is atypically atypical.
Oh, and this conversation is really damn cool, by the way. It’s so nice to hear about other people who think (at least kind of) like I do; I’ve met very few, and so far, all of them are on the spectrum. Reassuring, to say the least.
I love how you describe the thinking processes of NTs vs. Aspies:
“I have this theory about the difference between (most) NT people’s global thought process and between my (and potentially some other ASD people’s) thought process, and it has to do with like…thinking in terms of “objects” versus “environments.” A lot of the very smart NT people I know are very good at isolating “general ideas” and then organizing them in a way that treats ideas (and words, and most things) like discrete, individual objects which can be sorted and put in drawers and such. But I remember information in the form of nonverbal (and often, non-visual) environments, or contexts, as if each “topic” or “word” is simply one location/perspective within a whole giant web of everything I know. I’ve found that in many cases, this results in huge amounts of trouble figuring out how to verbalize and communicate my thoughts, but then corresponding advantages in detecting contextual irregularities/gaps in different people’s research, and in synthesizing large amounts of information.”
I’d like to hold on to this quote when I need to explain this NTs if that’s ok with you. So far I haven’t found as good a way to explain to to myself.
As far as the use of general terms…maybe this is the same thing as you describe and maybe not….but I get incredibly annoyed when people use certain similar terms interchangeably. My current pet peeve (because it is applicable to ASD) are the words: “disorder,” “disease,” and “syndrome.” As a scientist who studies a (by definition) syndrome, I regularly converse with other scientists who study other syndromes, or diseases, or disorders. I am always surprised with the level of interchangeable use of these terms by those scientist and ultimately by the general public.
I’ve interpreted the meaning of these words through years of being involved in bio-medical research and by breaking the words down into their root words. I’ll spare you the long definitions right now, but basically Asperger’s is most correctly defined as a “syndrome”, which in essence is just a frequent co-occurrence of multiple characteristics that deviate from the norm. The word syndrome should not imply that the condition is defective in any way, just different from most. Some use the word “disorder” to describe autism, and by extension Asperger’s. I think possibly, the traditional idea of autism described by Leo Kanner can be described as a disorder since the “differences” that severely autistic people have severely impairs their ability to function as a normal member of society. However, in general, I think it is incorrect to call autism, and especially Asperger’s, a “disorder,” since I don’t believe that we are functioning incorrectly. In fact, I believe Asperger’s to be a frequent and necessary genetic variant within a population that drives evolution and development of society (And you can take this as an expert statement since I have a Ph.D. in genetics with an emphasis in molecular evolution.). Basically, I believe that the autistic mind in general is a natural human variant and the the REAL disorder in Kanner’s autism are the cognitive deficits that make it difficult for an individual to cope with having an autistic mind, although maybe some very intense sensory sensitivities could themselves be considered a disorder. Therefore, I am a proponent for taking the “D” off of “ASD.” Because this word can define us in a way to help us receive helpful public services, I suppose the “D” could stay, but honestly I think it just puts a negative spin on us and fosters further discrimination. I think that people might appreciate and accommodate us more if we are seen in a positive light, but maybe I’m just too hopeful. Who knows?
Finally it is absolutely 100% incorrect to call autism or Asperger’s a “disease.” A “disease” is considered something “bad” that needs to be cured, or else it will continue to get worse until the patient eventually dies of it. Although some genetic disorders can trigger disease, a disease is always something that is acquired. It’s unnatural. It’s not supposed to be there. It progressively gets worse, and is sometimes contagious. Although, those who study ASD do not use this term, I’ve heard it used in reference to ASD in pop culture.
In summary, because people (even doctors and scientists) use these three terms interchangeably, ASD gets a bad rap and is seen as something that is bad and must be eliminated. It is painfully obvious to me how inaccurate use of terms causes massive misunderstandings, and misinformation, and stereotyping, and confusion, and arguments, and so on, yet it does not seem to bear any importance to “everyone else.”
Wow, thank you for this clear explanation of ‘disorder’ v ‘disease’ v ‘syndrome’ and how autism in itself is more of a deviation than a problem. I think that Asperger’s shouldn’t be seen as a seperate syndrome from autism, but you make an excellent point about how in the ‘traditional’ Kanner form the problem is the cognitive deficits. I don’t think the autism spectrum should be divided into subforms, exactly because it doesn’t seem to be the autism in itself that creates the differences. But for a lot of people it does seem confusing that the one word can describe the “Aspies” as well as the more severely disabled “Kanner autistics”, if I use the current subgroups.
I don’t like to subgroup either. Autism and Asperger’s are on a spectrum and they are related at least partially according to recent studies of brain scans. I think Kanner’s are either just very far on the autism side of the spectrum or maybe not as far down the spectrum but with significant cognitive deficits. I have a whole 3D view of how they all relate with sensory sensitivies along one axis, cognitive ability along a second axis, and environmental aspects that influence both of these in a third dimension. I need to draw it out sometime.
Here’s a whole lecture in an amazing series of lectures about developmental; differences in Autism &co. This particular one goes into a good amount of specific differences (if at all) between males and females with Aspergers/Autism.
Personally I’ve found ‘language delaty’ differences (that’s widely know) but I’d say I actually know more ‘females’ who tend towards autistic type behavious than males, quite oddly.
Link don’t work in article.
I personally have taken great deal of abuse from men because of the autism. I was very, very naïve; had no awareness of my own sexuality or theory of mind about men’s sexual motives until I was at least 25.
It wasn’t until I actually had a boyfriend at age 26 that I was even able to form a coherent sense of what I was and was not comfortable with, as I had had no frame of reference for what a sexual relationship really was before that.
I had several men be very inappropriate with me in my early twenties, who I met through mental health services. At least four of these were on the autism spectrum themselves, in varying intensities. It doesn’t excuse their behaviour as all of them had much more life experience than me (and were far less vulnerable), including relationship experience. It is possible that they themselves lacked the full appreciation of how vulnerable I was, and in fact I do think this is so.
However, there were no protections in place in the services to ward off that kind of scenario. Also- the fact that I was a service user in the mental health services (due to mental health problems caused by undiagnosed autism, for one) should have been enough to prevent these kinds of abusive situations from developing. It was not.
All of these people should have known better than to: harass in various mediums/bully/use emotionally for their own ends/try to exploit sexually/use sexually/sexually verbally cajole or abuse/groom for their own purposes related to religion or rigid belief systems in a very intrusive and aggressive manner (all of the above happened to me with the several men that ALL behaved abusively towards me in some way).
I GENUINELY had no way of protecting myself against the majority of situations that arose with these men- not with foresight; and I had a major lack of experience because I had led a very restricted life due to my special interests/restricted interests and my sensory processing handicaps.
I was unable to meet a boyfriend through normal means due to my social limitations and restricted behaviours, and sensory processing difficulties on a daily basis. Therefore, when one of these people (a teacher at a mental health service!!) showed an interest in me, I understandably became very attached. In retrospect, the contact with that person caused me all sorts of very painful problems, that had I had an autism diagnosis, may not have occurred. Maybe this person would have taken a step back and thought more about the implications of befriending a young woman in this context, had I myself been able to be vocal about my Aspergers ? Given that I had no idea, I also had no way of explaining my naiveity and extreme vulnerability to anyone who wasn’t already perceptive enough to notice, or invested enough in observing appropriate boundaries to care.
I did not have the social skills or understanding to say no when I felt uncomfortable about their behaviour either. At age 28 I still have severe PTSD from a few of the things that happened to me with these men. I experience debilitating anger about it and debilitating ruminations about things that they said and ways that they behaved.
In the end I still have only been able to meet my current boyfriend through mental health services, although this time he was a patient as well and it was more of a level playing field.
I see all of these issues as being hugely important and overlooked when it comes to females with autism. And that’s just scratching the surface for women with AS. There are so many more !!!