This is a series of posts that I’ve come to think of as my Asperger’s “origin story” or how I came to realize that I might be autistic and what happened in the wake of that realization. It’s a mix of personal narrative with some advice based on what I learned from my experience. I strongly encourage you to read the many comments left by readers. Each person’s story is different and the comments on these posts are creating a rich tapestry of what it means to be diagnosed with Asperger’s Syndrome or autism as an adult.
The series is now complete. It has also been released as an e-book titled I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults for Kindle and iPad (Nook is coming soon). The list below is the complete table of contents for the e-book, with links to the sections available on the blog.
Table of Contents
Part 1: Introduction
Part 2: Autism Spectrum Disorder Definition and Traits (includes over 100 questions to help identify autistic traits in adults based on the DSM-5)
Part 3: I think I Might Be Autistic. Now What?
Part 4: Paths to Realization, Is This Me?
Part 5: Aspergers/Autism as a Sensemaking Narrative
Part 6: Mourning the Loss, Healing the Child
Part 7: Self-Diagnosis or Professional Diagnosis
Part 8: Obtaining a Formal Assessment
Part 9: Types of Assessments
Part 10: Preparing for your ASD Evaluation
Part 11: Adult ASD Evaluation – The Diagnostic Interview
Part 11: Adult ASD Evaluation – The Tests
Part 13: Waiting for a Diagnosis
Part 14: Receiving a Diagnosis
Part 15: Moving Forward after a Diagnosis
Part 16: Disclosure
Part 17: An Evolving Sense of Self
Part 18: Closing Thoughts
Musings of an Aspie 
I actually have tears as I read this. I don’t usually have tears. I scored 17 EQ and 63 SQ. “You think like a man!” A common observation made throughout my 43 years. Apparently I have been diligent in my research about my potential diagnosis. I’ve utilized other web sources as well and my new therapist sees it. No one would ever believe it as no one has really had the opportunity to live with me/see me daily over an extended period of time. And perhaps I could confirm it with a phone call to my alma mater where I was diagnosed LD in my senior year! Initially I was researching Aspergers as a possibility for my genius 7 year old daughter. Then my spouse…but it might just have been me all these years. I think I’m going to puke!
My neuropsychologist actually said the same thing to me (thinking like a man) and then raised the extreme male brain theory (ack!) and used my “masculine” tendencies as evidence in support of my diagnosis. It was very unsettling, to say the least. I hope that once you get used to the idea, you’ll feel better about it. It can certainly be a huge shock and take some “digesting” at first. Mostly I’ve found that Asperger’s has provided me with a lot explanations for previously unexplained aspects of myself, so it’s been a positive thing.
As an Autistic male, late diagnosed, I always found the ‘think like a man’ thing problematic. I have always worked in and felt most comfortable in women-centred spaces. I’ve worked in fashion and education. I cook, clean and sew, and have a very strong emotional sensitivity to other people and their needs, while being physically/socially rather typical male. I *think* that what the neuros are saying is you/I/we think differently, and that it is not situated in one of these gendered neurotypical spaces.
I think you’re right about their intent but it often comes off as being biased or stereotypical. I’ve seen a lot of psychologists make problematic statements. Recently I came across “aspie female-NT male relationships are more likely to work” supported by the assumption that women are so much like NT men (logical, practical, less emotional, etc).
Sorry, didn’t mean to get ranty on you! The recent survey of autistic folks that we did here had a lot of people expressing that they didn’t fit typical gender roles/stereotypes/expectations. This may have to do with, as you say, not fitting into neurotypical thinking/behavior patterns in general.
Can I politely ask why the “ack!” in response to EMB theory? I’m not informed enough to know better than you but from my understanding it explains nearly all common autistic traits (more than a other psychological theories about ASDs) and makes sense to me personally because I do have a lot of stereotypically male qualities and as a younger child believed I wanted to be man. I’m now still very androgynous. I’m just genuinely curious as to what you don’t appear to like about EMB theory as I would like to know more about it because psychology and neurology are things I’m very interested in.
@pinancassdan Okay so I’m like a year late here lol so idk if you’ve figured it out yet but like. Any and every differences between the brains of “the two sexes” is purely from (mostly subconscious) conditioning.
Girls being encouraged to play with dolls often learn to be more nurturing and empathetic, boys who play with building things and play fight tend to be more rough and logical. And this isn’t just parenting, it’s TV, and ads, and toy isles, and kids magazines, and their schoolmates, and their teachers, extended family, family friends.
And when I say subconscious, I mean that there was a study done on parents and 1-year olds. The one year olds could crawl up slopes, I forget the degree, but every infant was able to crawl up the same degree of slope, yet the parents mostly believed that the boys were physically able to crawl up a slope of 1 degree steeper than the girls.
When people look at a picture of an infant crying, and they’re told it’s a girl, they think “she” is being fussy. If people are shown the same picture and told it’s a boy, they think “he” is angry.
Added to that, do you ever think about what femininity actually is? It’s a set of implicit social rules. You know what autistic ppl tend to suck at? Implicit social rules. It’s nothing to do with an “extreme male brain”, it’s just autism being autism.
What’s more, both the gender and the sex binary are way oversimplified and inaccurate. Not only do many people identify as a non-binary gender, but many people are also physically intersex. And chromosomally speaking, something like 1-2% of the population is intersex, but most of them would have to have their genes examined to find out.
In conclusion, the extreme male brain theory is a bunch of crock originally invented by people who never ever studied sex and gender outside of introduction to health classes. Any questions?
I’m a man and I was told when I was young, I overemphasize intellect. I discovered my Asperger “flaws” 6 months ago at 73. Let sleeping dogs lie!
I’m trying to find out if I’m on the spectrum right now. By “trying to find out” I mean “at this point I am almost 100% convinced that I am, but my life situation means I can’t get diagnosed”. This is really helpful. I used to think that no matter how many traits I had, I couldn’t possibly be on the spectrum because it “would have been diagnosed in childhood”. Looking back, my father seems to have a lot of traits, which could be a reason why he never thought to get me assessed – he didn’t think anything I did was unusual.
I don’t think I’ll feel at peace or justified in my thinking until I obtain a diagnosis, but I am so glad I stumbled across your blog. Thank you.
I’ve heard others say that as parents, they didn’t see ASD traits in their children because they were also on the spectrum and didn’t know it yet. That’s a great hypothesis for why your father saw your “unusual” traits as not at all unusual. Depending on how old you are, it’s also possible that there just wasn’t the awareness then that exists now.
I’m so glad you found my blog too! It’s really gratifying to hear that it’s helpful. Getting a diagnosis can be a long slow frustrating process, so know that you’re not alone in the struggle.
My family is definitely full of spectrum-y traits (like at our family gatherings, there is always a couple of quiet rooms that you can go take a break in and usually everyone does it all at least once) which is why I (and also everyone else) didn’t even really start to notice that there were maybe some non-typical traits that I had until I got to college.
I think that people who grow up in a family with a bunch of people on the spectrum (diagnosed or not) are less likely to realize that certain things (like having a quiet room at family gatherings) are unusual. I was fortunate in the way my parents accommodated a lot of ASD traits without really knowing that’s what they were doing. It was just accepted as the way I was and no one really thought much of it. Sounds like your family was much the same.
I can soooo attest to this! I didn’t notice anything out of the ordinary with my boys because they are “just like me.” In fact, when things were pointed out, I actually dismissed them! What did the doctor’s know anyway? My kids were perfectly normal, after all, “that is exactly what I did at his age.”
Now, I think when I see my youngest doing things that may be considered neuro-typical I quickly point out the behavior thinking it odd. Why would a child pretend to feed a baby doll fake food? To me, that made no sense. Doesn’t he know there is no real food in that cup? I worried about his intelligence–then I come to find out this is supposed to be “normal” play. Funny how we all see “normal” so differently, isn’t it?
I worried about his intelligence–then I come to find out this is supposed to be “normal” play.
I laughed when I read this. I think my daughter has a bunch of autistic traits that rubbed off on her from me. The first few years of college and her working life, she kept running into issues with being socially inappropriate that made her mentors question just how she’d been raised. 🙂 Fortunately she seems to be a lot more “teachable” in that area than I am.
Oh dear, I can only imagine what traits will “rub off” on mine that are my traits and not really their own. LOL
I have just received notice of my first appointment addressing the issues related to my suspected “Aspieness” (certain ASD). Unfortunately, I was referred to a general therapist because they do not have anyone that works with/can diagnose adult autism/Asperger’s. According to the triage nurse, they can refer me to a specialist after evaluations dealing with “social anxiety”, “empathy” and etc… It feels like such a waste of time – I really do not think that silly exercises can replace and understanding of underlying issues that cause the social anxiety/empathy and etc. issues. I would be happy to overwhelm the therapist with information and hope for that person to refer me to a competent individual that will provide a diagnosis, so we can work from there. I honestly say just on eye contact, “When I talk to some women, they fold up their arms because they assume that because I am not looking at their eyes, I am oggling their breasts. I would look into a person’s eyes, but I do not know how long I should look in them for and it feels like we are violating each other with eye contact – if more than a glance, it is very grating and that glance is pushing boundaries…”
I inquired about whether she was sure there was no one with a background that could really get a sense of my issues. She said “no, unfortunately”. Of course, instead of addressing this further (because I’ve learned in my ripe old age of 38) to the triage nurse, I stumbled, paused, stumbled and said “umm…okay”. I really do not need a formal diagnosis (although it would give me some relief). I just feel like someone tackling these issues from the perspective of someone that has a normal operating system, will not be a benefit to me. I never wanted to deal with this. It’s just a shame when a patient needs proper treatment, it’s a big mess of HMO tape.
What would you do?
Thank you for this blog. I will continue to read, but will refrain from too many more posts. I can go on and on.
I totally understand where you coming from and agree that a therapist who wants to “fix” your empathy and social anxiety issues without taking the underlying cause into account could range from frustrating and pointless to downright harmful. There is a chance that just because a therapist isn’t qualified/training in diagnosis that they may still have knowledge of adult ASD and approach therapy from that standpoint, so maybe worth giving it a shot? If you find that the therapist just isn’t right for you, you can certainly discontinue going.
What would I do? I guess my answer would depend on where you live and what sort of resources are available. Is there a local autism organization that works with adults? Do you have any other options for choosing a provider? If you’re in an HMO then I’m guessing not. I wrote a post on potential alternatives for getting a diagnosis when you hit a brick wall that might be helpful: https://musingsofanaspie.com/2013/02/17/adult-asd-seeking-a-professional-diagnosis/
I understand wanting to have a diagnosis for peace of mind and how frustrating it can be when you run into a lack of options. I went in circles for a while before finding someone who could diagnose me and I literally only had two choices of providers in a 50 mile radius (one of whom was really condescending and unhelpful when I called them).
I really love your blog (so far. I’m going through the backlog) and would dearly love to download that book but I bought a Kobo e-reader it reads loads of stuff (epub, mobi, pdf) but not Kindle, Nook or Ipad formats. I thought I’d buy the kindle version then just slide the file over my kobo but apparently when Amazon says “pc reading app” it means “you’ll only be able to read it on your pc” and my pc is wonky at best of times, so… Do you know if it’ll come in a format for generic readers soon? Because from what I read so far it looks like it touches all the points I’ve been looking for in other books and wasn’t able to find and it’s not available in hard copy. Heck, I’m ready to paypal some money over to you in exchange of a epub/mobi/pdf file.
Thank you for the kind and enthusiastic comment! I didn’t realize that Kobo wasn’t compatible with the other formats. The book is coming out in paperback in a week or so if that works for you. I can come back and post a link when it’s out.
Oh yes! That would be great, thank you!
Amazon.com is finally showing the paperback version as available. You can find it here:
I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults
Thank you! I’ll jump on it as soon as I can.
Thanks so much for the wealth of useful information you’ve compiled and shared through your blog! I first came across your blog a few days ago, while frantically searching for more information about unrecognized ASD and Asperger in adults… I am a male in my 40’s, reasonably successfully employed, married (mostly happily, from my perspective – though reportedly perhaps not so much from my wife’s viewpoint) with two children, but I’ve ALWAYS been “different.” Two weeks ago, my wife, apparently nearing her wits end in putting up with my behaviors, and with support from her therapist, courageously shared her observation that I am probably on the spectrum. She gave me a copy of Maxine Aston’s “The Other Half of Asperger Syndrome,” and I immediately read the first several chapters, again and again saying (often out loud) “that sounds like me!” In spite of having a child with developmental delays (Down syndrome, not Autism), and knowing many parents of children on the spectrum, I personally knew almost nothing about Autism or Apergers. My wife and I have begun couples therapy, but the therapist that my Employee Assistance Plan referred us to is not very familiar with ASD (at least he is aware of this!), and we are working with him and on our own to find other resources in our area. The more I’ve read about ASD, the more I recognize things from my life that now seem more easily explained, and through that explanation I’m very hopeful that I can better understand (and, when appropriate, change) why I do things the way I do that drive my wife and our kids crazy.
It is usually not in my nature to post rambling comments on blogs, but the information and observations you’ve posted and the many, many wonderful comments here have definitely “clicked” with me, and I wanted to share my thanks!
You’re very welcome! I’m so glad you took the time to comment and share your story. Those first days and weeks after realizing you might be on the spectrum can be confusing and exciting and just plain scary. I’ve had a lot of people ask me how to tell someone they might be autistic and it sounds like your wife chose just the right way to suggest it to you. I think it was not only brave of her to do so, but brave of you to consider it so openly and willingly.
Good luck with the couples therapy and with moving forward. I can tell you that my husband and I both feel like our marriage has improved tremendously since we learned about my AS and how it impacts our relationship. We’ve both made a lot of changes and it’s been one of the best things that ever happened to us.
Yes! Normal is in the eye of the beholder. 😀
OK, that was actually supposed to be a reply to Aspiewriter. No idea how it ended up down here.
“normal” can also occupy a huge span of behaviours and situations. if you are chasing nine or ten different “definitions” then you may need to ask it of as many as six or seven different people.
as far as I have been able to deduce thus far, “normal” typically equates to “as I expect it to be.”
I took the test at http://www.aspergerstestsite.com/75/autism-spectrum-quotient-aq-test/ and got a 43. (Out of 50)
The official criteria for Aspergers Syndrome is an AQ score greater than 32. Mine is a very high score obviously, but what does it mean? I’m 61 and was extremely good at math as a child, made almost perfect grades always, but I was and remain very shy. I was socially clueless into my late 20s – also suffered from anxiety issues since at least age 24. Still, I managed to get a PhD in Physics and I have a good job doing math, physics & research. Do I have Asperger’s? Because of my age the doctors I’ve asked dismiss it as a silly and useless question. Still I’d like to know if just to make since of my childhood.
That is a fairly high score. It doesn’t in itself mean anything because the AQ isn’t diagnostic. However, it’s a positive sign that Asperger’s might be worth looking into as an explanation for things like your early social difficulties and anxiety. Many people with Asperger’s are quite successful, especially in the type of work you did. The doctor who diagnosed me had a lot of questions for me about how I’ve managed to own my own business and be good at it – he was really interested in what kind of work arounds I’d developed, etc.
To address the last part of you comment, I don’t think wanting an explanation for how you are is silly or useless. Making sense of your life is important, regardless of your age or how successful you’ve been or anything else people might point to as reasons for why you don’t need an answer. If you find it impossible to get a doctor to consider it, you can certainly still do your own research and read the experiences of autistic adults to see how much you identify with. For me, the official diagnosis was nice, but my original realization and research was much more important in working out why so much of life has been strange and difficult. 🙂
My therapist diagnosed me as having high-functioning Asperger’s / ASD at age 61 — now about a year ago. At first I was very happy as it helped me make sense of many things in my life, especially my childhood and being behind most kids socially by 5 to 10 years despite being ahead of them in math by 5 to 10 years. My social life was non-existant until about age 28. My IQ is well over 140 and I went to Grad School at Stanford in Physics. But my wife (who I married at age 32) was very upset. She actually cried when I told her I was an Aspie. I tried to explain it to her as best I could, but she told me to never bring this subject up again. Most the people I’ve told don’t believe me – including my Mom (who is now 85). So now I not only have mixed feelings about my ASD diagnosis, but I’m even wondering if it was accurate.
I’m currently reading “Shadow Syndromes” by John Ratley and Catherine Johnson. Great book! (See http://tinyurl.com/kkwt7ex )There chapter on Autism makes me wonder if I have an incomplete expression of ASD and maybe that’s why it explains some of my behavior, but many don’t see me as a Aspie. For example, according to my Mom, I always got the metaphorical meaning of things even as a very young child (I was never too literal) and I was very empathic. Maybe too emphatic as I cried in every movie where an animal got hurt or killed. But she admitted I was fascinated with numbers even at age 3 and was put in 6th grade math at age 5. And I stared at maps and patterns endlessly as a child. Plus I was extremely shy and I suffered from anxieties (social and others) from an early age which Aspies are prone to do, I still do.
Anyway, it’s really bothering me that now I can’t accept my diagnosis. And even beyond that, why can’t I know I’m an Aspie even if others don’t agree? How do I know for sure? Any advice?
Thanks,
Bill Anderson
My advice would be read more stuff by people who are on the spectrum and pay less attention to people who are hung up on outdated stereotypes. (Apologies if that comes across as blunt. I can’t think of a way to soften it.) There are many many ways of being an aspie and not everyone has every trait. Not all of us are literal or great at math or don’t get humor or whatever. For example, I am the opposite of a “thinking in pictures” kind of thinker (which is a common stereotype). Initially I thought this “disqualified” me from being on the spectrum but in talking to other autistic people I found that some think in pictures but others think in words, numbers, concepts, movies, and other systems that are complex and wonderful and you’ll read about in a text book. The “experts” know surprisingly little about actual autistic/aspie adults, it turns out. 🙂
So, how do you know for sure? I think you should trust your original reaction – that gut feeling that told you that it was the right explanation for so much of your life and made you happy. What others think or tell you (based on their own motivations, feelings and beliefs – not on your own lived experience) has far less credibility when it comes to your identity and self-concept.
I know that it’s not as simple as deciding to believe that and disregard what others are telling you, but it’s a starting place. For me, reading and talking with other adults on the spectrum was hugely validating and brought me a long way toward acceptance. There’s something about being able to say “me too” again and again that helped solidify my confidence in my diagnosis (and before that, in my own suspicions).
I hope this is somewhat helpful and not overly harsh. My language difficulties make it hard to tell the “tone” of language these days, especially my own it seems.
I’d agree with this. If it felt right then it is right, regardless of what others say. And I know that mothers always think they’re right (and maybe some are) but some most definitely aren’t! I know that mine won’t believe it either if I decide to tell her – she has hang-ups about what other people might think – I could have been born with “Aspie” on my forhead and she’d deny it. But despite knowing that she spouts a load of crap I still find myself doubting myself (about all sorts of stuff) just because she’s poured scorn on my ideas or opinions. So you’re not alone in doubting yourself unnecessarily. I don’t know why your wife wouldn’t want to discuss it though maybe it’s the same issue about bothering that others might judge you / her? But it’s her issue, not yours. Don’t let it make you doubt yourself. She might get used to the idea in time…. And if she doesn’t, well you’re still you. You’re still the same person she married, just more knowledgeable about yourself.
You can’t know for sure (unfortunately) but I’ve always been a believer in trusting my gut. (Except when it says it needs food)
Ho ho ho! “Hung up on outdated stereotypes…”. Your language provides truth. I see on the net so many outdated stereotypes held to by educated people who should know better. A lot better. But I guess that while we learn more about our aspie-ness they must study through their stereotypes. Sadly, they make some journeys to understanding longer and harder and more painful for so many of us.
Many of my friends don’t believe I’m an Aspie either. I am nearly 66, and found out my Aspergerishness a little over a year ago. This is the way I see my situation: without my realizing I was an Aspie, I nevertheless knew I didn’t fit in, and developed strong coping skills, imitating neurotypicals consciously and unconsciously and trying not to be a square peg in a round hole. You might say that I have been ‘assimilated” by the “Neurotypical Collective” sort of Borg like from Star Trek. I still have strong feelings like I don’t fit in anywhere, and that I probably never will. Nevertheless, I am highly skilled, get along well with others and have had a series of high paying important jobs. Marriage is another matter. I have had two, both which failed. I have developed empathy, and care about those who are hurting, though I can seem harsh and uncaring in my assessments and understanding of others and their motivations at times. This is pointed out to me by others, as I frequently miss that I am operating this way. I also have a very high IQ and have an interest in physics and electronics. I can’t wait to retire and study and invent things. Another strange thing about me, I am somewhat intolerant of Aspies who do not try to fit in with neurotypicals. This is not our world, it is their world. By failing to attempt to fit in, we are shooting ourselves in the foot, so to speak. I have met poor, underemployed or unemployed Aspies. Compromise is necessary. I will have my place, and I will succeed. Not at the expense of others, but in spite of the huge extra effort I must put forth to compensate for my being an Aspie. Your wife needs to get over being upset about your Aspie diagnosis. Reality is reality. We did not create ourselves. Take care! Stephen S. Platt.
In my autism networking group, there is a woman who got her diagnosis at age 70! So it’s not a question of “being too old”. I think what truly helped me get my diagnosis was to emphasise the areas in which I *do* still struggle, despite being pretty successful at the life I’ve chosen. One of the criteria of getting diagnosed with Asperger’s – or autism spectrum disorder as it is called now – is that there needs to be a “significant impairment”. Without that, it’s really hard to get diagnosed, even though making sense is just as important or even more important for adults like us! But unfortunately that’s not a diagnostic criterium yet.
Oops. That was supposed to be a reply to Bill Anderson.
Your blog has been so helpful for me. I do not know if you accept awards but I nominated you for one here – http://annarosemeeds.wordpress.com/2013/12/17/the-sisterhood-of-the-world-bloggers-award-and-blog-of-2013-award/
Thank you so much! I’m honored that you nominated me. My brain being what it is lately, it may take me a while to get to doing the “acceptance” post but I’m thrilled that you thought of me. ❤
That is fine! Most important is the fact that you know how great your blog is and how much others need it! 🙂
I’ve just been to the doctors this morning and got her to reluctantly agree to refer me for ‘a second opinion’ (psychiatrist’s evaluation) – she doesn’t think I have Aspergers because she reckons all the explanations I came up with could be just examples of normal behaviour! (I barely spoke at school but she was quiet too so does that mean she has Aspergers?! Well gee, i don’t know, do you fit all these criteria like I do?!!!) She couldn’t be bothered to read the GP’s Notes that ‘d printed off the Autism website, wasn’t interested in the 18 pages of points I’d written of how I fitted the DSM4 criteria (apart from to say that if I’d written all that I should be able to remember points to tell her – the whole point of writing everything down is because my mind goes blank and I fall apart!!!!!) – I didn’t even remember to mention the stimming and I’d been sitting in the waiting room for 10 minutes with my legs going up & down for England! I am so disheartened and now doubting myself. I know I don’t have such severe ‘symptoms’ as others but that’s the whole point of a ‘spectrum’. I now see what people mean when they say it’s a tough battle to get diagnosed. Have to wait 6 weeks now and pray that the psychiatrist actually knows about Aspergers….. Am going to have to go and hug the dog for a bit now and try not to cry but really needed to post somewhere where people would understand……
Self-advocacy is so hard and exhausting, especially in the face of so much resistance. I hope the psychiatrist is more open to listening you. Medical professionals can be so dismissive. Argh.
I’m glad you were able to come here to vent a little and get some support. What you’re doing is incredibly brave. Hang in there. We’re pulling for you and you’re doing a terrific job of not giving up on this.
Thank you!
thanks for your post……I am a Special Education teacher and found that I had AS about 10 years ago. It was a big relief to know that I was not getting repeatedly fired just for being a COMPLETE AND TOTAL LOSER as I had come to believe. I read a lot of posts and replies here about the diagnostic process. Frankly, I don’t get it……if you’ve got it, you’ve got it. I think being in my profession I see the AS traits in my students on a daily basis. I resonate with them. Getting a score on some diagnostic sheet by a person who has known me for a couple of weeks does nothing for me. Even if they say I don’t have AS, I KNOW deep down where I fit on the spectrum. Maybe one late night lying awake, breathe deep and ask your inner self about it………do I fit on this spectrum or not? It’s OK either way………
Please keep in mind that whether to get a diagnosis or not is a deeply personal choice and what might be right for you isn’t necessarily right for another person. You found that self-diagnosis is the right option for you and others feel differently and each person is entitled to feeling that their own choice and their feelings about it are valid.
Thanks….I realize that each person has a right to his/her own path. What I was saying is that even though some professionals may be quick to discount a person’s reported symptoms as being on the Spectrum, that person can still know they are an Aspie and that that feeling is valid….
I’m in a tough spot and I need some advice. I am an adult with numerous symptoms and signs of high functioning autism. I’ve compiled a list and have presented it to my spouse for an opinion and to validate what I was experiencing. I asked my spouse to read material on it so we could have a discussion. When asked about the list, my spouse went down it item by item and discounted each one saying that I don’t have it.
I know that it sounds strange, but I know that I have it between the online tests and signs and the way that my life has been growing up and even now. It just all makes sense.
Help! I really want to see a specialist on this but I would like my spouse’s acceptance first as I think that it will help going forward.
The reaction your spouse is having is not uncommon. They may need some time to adjust to seeing those traits in you or they may insist that “there’s nothing wrong with you” and not want to talk about it. It can be jarring to have to reconfigure how you think about a partner and some people are just resistant to the idea that a partner might have a disability or a condition that they hadn’t previously considered.
If you feel strongly that the traits fit you, it may help to get in touch with a therapist who can perhaps act as a bridge with your spouse. Or you may have to go forward on your own at first and hope your spouse is able to come to a place of acceptance in the near term. I totally understand wanting that support and it is a big help to have someone “on your team” during the sometimes difficult diagnostic process.
Thank you very much for your advice and encouragement. It’s good to hear that other have gone through something similar and that it’s not uncommon.
Some of the reasoning is that my spouse doesn’t see me like other autistic people that we know, so I am not like them. I tried explaining that when you’ve met one person with autism that you’ve met one person with autism.
Thank you again for your comments. They are spot on and very helpful!
I don’t know if it helps, but I totally understand. I felt like nobody really took any of my points seriously until I wrote a huge letter outlining every single symptom that I felt applied to me (with examples), and basically gave the ultimatum that if they didn’t read it right that moment, I would leave and not come back. (I also had one psychologist tell me I couldn’t refer to my own notes because she wanted to hear me say it in my own words. WELL WHO DO YOU THINK WROTE MY NOTES?) But even after the letter they were still skeptical, until my partner confirmed everything I’d told them. I mean, jesus rice crispies. If you want to get diagnosed as an autistic woman, you need to bring a neurotypical man because otherwise nobody will listen? How effed up is that?
Hang in there. It’s incredibly hard, but even if the professionals won’t listen, we will.
It does help, a lot, thank you! I had 18 pages all neatly typed (10,000 words for crying out loud!) listing the different criteria and all the thoughts I had about how I met each. And yes, my doctor wanted it in my ‘own words’ too!!! I think I’ll insist they read it and I’ll not budge until they have 🙂 I’m very immoveable when I want and they’d have to drag me!
Still, at least she didn’t waste more than my 10 allotted minutes – I felt like saying that as I’d never been to that doctor’s practice once in the 4.5 years I’ve been registered I should merit more but unfortunately I was too busy retreating back inside myself.
Thank god for the internet and blogs!!
🙂
A quick update – I’ve just got back from my assessment and I officially have Asperger’s!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am SO happy, and relieved, and emotional. I kept welling up in the assessment once he’d said it. My 18 pages of notes were very helpful, he’d read them all and said it saved us lots of time and questions. And apparently I’m the most straightforward (presumably adult female) case he’s seen. So it’s two fingers up to the crappy doctor who said it was social anxiety and boldly on with the rest of my life. The psychologist was fab, I was able to be myself (I haven’t talked so much (so quickly – multiple splurges!) to another person in a long time) and I actually enjoyed being able to say what I felt about life. I got excited telling him about how I organise my bookshelves, I described my wardrobe layout in full (excruciating – for him) detail, he now knows how I organise my kitchen cupboards….. And just to be told that I definitely (not a doubt in sight) meet the criteria and he’s happy to give a diagnosis of Asperger’s….. Wow.
I’ll have a couple of weeks to wait for a copy of his official report but I have my diagnosis and that’s what matters. I wish I’d had it years ago but I have it now.
So thank you all for being out there and being fellow Aspies. It’s been great having this site here for all those ‘yay that’s me too’ moments that have cemented it in my own head and given me the confidence. And an extra big thank you to Cynthia for her I Think I Might Be Autistic book because going through that & identifying with so many points made me realise that I’d finally found myself.
Life is fantastic. Happy Thursday everyone!!!!!
Congratulations Liz! Very pleased it is so positive for you.
Yay!!!!!!!!! That’s so exciting! Congratulations!
I’m so happy for you. The psychologist sounds like he was very well-informed and I’m sure your preparation was a huge help. Now I see why you said that you feel invincible today. What a terrific day! 🙂
Thank you 🙂 I just keep saying to myself ‘I have Asperger’s’ and it feels amazing, empowering, validating…. Just great.
looks like your evaluation was more serious and detailed than mine. my evaluation took just 2,5 – 3 hours for the 1st section.
*sigh*
Hi!
May I ask your advice? When I am reading about your assessment and about other ‘Western’ (here in Russia we call The USA and EU in the way like this) autistic people experience of getting a formal diagnosis I am a bit concerned. Because as for me… My diagnostic was just 2 sessions. 1st one was an hour of filling up screening questioners like RAAD-s and others and about 1-1,5 hours of memory and pther ‘general’ testes. They asked me to draw an not existing animal and other things like that. And on the second session they told me that I am on the spectrum and rather have ‘broad autistic phenotype’ than ‘autism’ because my screening scores are very high but not as high as they would be in case I had autism, so they guess that my autism is ‘light’ or ‘compensated’.
And when I am reading about this looong sessions with testing all the ‘aspects’ of your brain functioning I start to doubt. And this doubts seriously bother me. Am I really autistic? Is it the reality or just my illusion? What to do with this (they don’t give me any 10 page reports of my cognitive strength and weakness, just give me an advice to go to the support groups and to check my son)?
Honestly I am even thinking should I go to the USA or somewhere else for diagnostics? Probably your specialist can help me? Is it generally possible to pass it in English or should I look for a native speaker? Where and how to look for him? I don’t know what to do with all this. 😦 I am so tired and worried…
Oops, my reply to you accidentally posted separately.
There is a great deal of variation in how diagnoses are made, even here in the US. Some people here get a diagnosis simply by talking with a psychologist for a few sessions. I’ve even heard of people who were informally diagnosed by their children’s autism specialist. It’s really all over the place and your experience sounds typical of many that I’ve heard about.
It sounds like what the person who diagnosed you was saying is that you are on the spectrum and you’ve learned to mask or compensate for a lot of your autistic traits so you scored a bit lower than someone who is more “obviously” autistic. It’s very possible (and common) to answer self-reporting questionnaires like the RAADS-R based on the coping strategies that you use, which can lessen the strength of some of your answers. For example, you might choose “sometimes” rather than “always” for topics where you’ve learned to cope well. If “always” is scored as 1 point and “sometimes” is scored as 1/2 point, then a bunch of “sometimes” answers can substantially change your score.
As autisticook said, your diagnosis is still valid, even if the clinicians qualified it as “light”.
I have 2 concerns about it. First that I’ve got an impression that the diagnosis is based on the questionnaires. So there is not difference between formal assessment and self-diagnostics. I can do the same myself and still doubt is it’s the reality or something ‘in my head’ But probably they also observed my behavior and made their conclusions on both. However it seems that your specialist looked carefully on your brain functions and made conclusions based on more ‘objective reality’
Another concern is that they tell nothing about my cognitive specifics. I hoped to learn better how to compensate my own weakness with my own strength. But I have no idea about my personal specifics as an autistic female.
I think the difference between self-diagnosis and having a professional administer the questionnaires is that the professional is also taking into account their third person observations about the person completing the questionnaire.
The person who diagnosed me suggested seeing a therapist to work out coping strategies but I never took that step because blogging and reading the writing of other autistic adults has been immensely helpful to me in that area. But there are people who do coaching and mentoring of autistic adults, so perhaps you could investigate if that’s available in your area? I don’t think the diagnosing clinicians do much beyond reporting their findings, which in some cases are quite detailed and in others are simply a pronouncement of the diagnosis.
I’m from the Netherlands, and I wasn’t tested at all. No screening tests, no cognitive tests, only one questionnaire that had to be filled in by my mother about my childhood, and two 45 minute interviews. Basically, even within one country people get evaluated for autism in wildly different ways. It all depends on what the therapist thinks is necessary to diagnose you accurately. In your case, since they told you at the end of the second session that you are on the spectrum, it means that they didn’t have any doubts and that’s why they didn’t do any more tests or interviews.
The lack of follow-up seems to be very common, though. They have no idea what would help autistic adults, so they just tell you “congratulations, you’re autistic” and then you’re on your own. They don’t really know anything about it either. It’s up to you to gather information about it and see if there’s anything that might help you. The blogs of other autistic adults have helped me far more than any therapy sessions in discovering my strengths and weaknesses.
So no, I don’t think you need to go to another country to get diagnosed more thoroughly. If there’s anything I can do to help you with your worries, though, I’d be glad to help!
There is a concern that each autistic person is very different and I am not sure that information from someone’s blog can be correctly applied to me and my own experience. It’s too hard to check.
The picture of the colored pencils on the cover of the Ebook caught my eye. One of my daughters had the habit of organizing as a young child, to include the art supplies, crayons,pencils, pens, in order of shade. Precisely. She was tested for delayed speech and I had requested that she be tested for autism as well due to certain other behaviours she displayed. The results were she is not autistic but she has autistic behaviours. She did end up in special education but never had any kind of label applied or name given to her difficulties which appeared to be the way she learned as opposed to the way she was taught as well as anxiety especially with testing. She is still my slow to warm and my late bloomer but I will admit I am amazed at how much she has accomplished and how well she carries herself. There were times I was worried. She is a CNA with the desire to continue education as a nurse. She is a very mellow single mother who does not stress over her somewhat clingy one year old. I wonder if leaving her to her own devices is best or if I should somehow allude to the book for her own self knowledge. I do not connect with her as well as I do my other two daughters who are so easy to communicate with. But her sisters both came to me independently and said they believed her to be Asbergers and I had to say to both that I had already came to that conclusion,long ago. What to do.
Given your daughter’s age (assuming she is an adult now and was tested as a child), it’s quite possible that she is on the spectrum but she didn’t meet the criteria as they were understood when she was younger. The diagnostic criteria have evolved a lot.
It sounds like she’s doing well but perhaps it would be useful for her to look at the possibility of Aspergers and see if would be helpful for her to know more. Maybe you could mention that the book cover reminded you of her and as you read some more, there were some other traits that sounded familiar as well. Then she can take the next step or not. Some people are happy/relieved to have a possible explanation for their difficulties and others are resistant at first. But even planting that seed for future exploration could be helpful for her.
Thank you for your response. I was thinking of how I could bring it up lightly. I might just get the book myself not only to help understand her better, but I am in a relationship with someone who I feel is likely to be on the spectrum as well. Your blog is so very helpful I that it allows me to understand actions and not take them so personally. Thank you.
You’re very welcome. My husband actually said the same thing early on in this process–that it helped a lot to know that I wasn’t doing things to be intentionally hurtful to him personally. I guess every little bit helps. 🙂
Hello. I Just finished reading your book and wanted to thank you for sharing your experience. I found it very helpful in assisting me in accepting something that has been hanging over my head for quite some time now.
I began to suspect I was on the spectrum about 6 months ago when, out of curiosity, began doing some casual research on autism in order to get a better understanding of what it was. I remember thinking how strange it was that I could relate to some of the characteristics of autism, but quickly dismissed it because children are autistic, not 30 year old women. Then one day I came across an article about a woman who was diagnosed as an adult and as I read through her experiences, I truly had an “ah ha” moment when I realized that it was me she was writing about. I spent a couple days doing some research, feeling very odd about myself, experiencing a wave of emotions, and not being totally sure if this was just something that was in my head. I couple days later, I made the mistake of drunkenly crying and sharing this new realization with a friend who completely laughed it off and and thought I was crazy. I suppose the first mistake was being so quick to tell someone when I was not fully convinced myself that I was on the spectrum. The second mistake, obviously, was using alcohol as a crutch to build up my confidence to tell someone. After that I was so mortified by everything that I just ignored it for a couple months. I wouldn’t say that I was in complete denial about it, but rather, I felt helpless a little defeated, thinking even if I am, no one will believe me anyway. I recently began picking up on my research, especially women with autism who were diagnosed late in life. I have come to a point where I have accepted it and am not going to let myself be ashamed of this. I really don’t have the means to get an official diagnosis (even if I did, my search on pathfinders showed up nothing within a 100 mile radius). However, after a lot of self reflection, studying the DSM criteria, reading through endless articles, and taking the online tests, I’m quite confident in now saying that I have autism. I have decided it is important for me to give it a name, to start living my life in the context of an autistic girl, and to even say it out loud to myself because 1) this “thing” I have lived with my entire life has severely held me back, affected so many relationships, and caused crippling fear and anxiety. It seems to be getting harder the older I get. I need to see it for what it is, accept it, and stop beating myself up every day for feeling so inferior. 2) I believe that accepting autism as part of my identity will give me more confidence as a person in general. I have built a life of isolation for myself and I know that is going to continue to cause problems down the road. I am going to graduate with my bachelors degree (finally) in December and the next step is for me to get a real job (not working out of my home, which my extreme social anxiety has driven me to do for the past 5 years).
Thank you for letting me share!
You’re welcome. I’m so happy that it was helpful to you and that you dropped by share your story.
Congratulations on your impending graduation and your self-realization. I think it’s common to have disclosures that go poorly, especially in the early stages, before we’ve completely thought things through and are still just excited about the possibility of having an explanation that makes sense. I’ve definitely found that acceptance and having a strong identity as an autistic person are helping me to be more confident and to cope with some of the more difficult aspects of life better. It’s a long slow process, but well worth the effort.
I’ve been reading your blog for the last few weeks, I think I have read most of it and feel like it might be time to comment.
Firstly, thank you – yours is the most accessible information on autism/Aspergers that I have found. You blog with intelligence, scepticism, honesty, humour and most of all compassion, and I value all of these.
Secondly to share the journey I have been on in the last few weeks. I thought I knew about Aspergers. My dad is fairly classically an introverted, fussy scientist (Sheldon Cooper style), so I grew up believing that nuclear physics was an acceptable breakfast table topic of conversation and that it was of paramount importance to put the lids back on marker pens and store them neatly. Some time in the 90s when Aspergers gained recognition everyone in the family (except my dad) agreed he fitted the bill. I studied computer science and psychology and work on corporate websites, so I have worked with, managed and even dated more than my fair share of oddball, nerdy engineers. I knew about the extreme male brain theory, and it seemed to make sense. My young son is a lot like my dad, so I tolerated food fuss, extreme noise sensitivity and a serious Lego obsession.
I recently saw a news article on Rudi Simone’s ‘Aspergirls’, and wondered if some of my more quirky female friends and relatives might be on the spectrum too. Exploring this idea I found your blog, and read about visual thinking, sensitivities, stimming, meltdowns, and shutdowns. By the time I got to Rudi’s list of female traits I didn’t know whether to laugh or cry – never mind my friends and family being aspies – it described me to a spooky degree! I really hadn’t seen that one coming.
Some of it isn’t such a surprise, I knew I was introverted and a bit OCD, and a female in the computer industry is already seen as a bit of a geek. Some of it was downright weird – the questions on the Aspie Quiz – Do I like slow moving water? – well, yes I find it mesmerising, but what does that have to do with anything. Do I have hair whorls or hair that sticks straight up? – err, well yes, but seriously – I have aspie hair? But the transforming thing for me has been the stuff about meltdowns. Stuff I’ve never discussed even with those close to me, because I’ve feared that the only conclusion was mental illness. Does this explain my infrequent, but still embarrassingly regular tendency to throw a tantrum at supermarket checkouts, or inappropriate crying jags at work? Does it explain the various inappropriate, self-destructive, obsessive crushes I’ve had on people throughout my life? Does it even explain why I reversed my new car with its horrible, high-pitched parking sensor noise, straight back into my neighbours car?
I’m generally very suspicious of neat answers, and of people who want to tell me they have found an answer to everything in a diet, religion, self help book etc, but this feels a lot like it might be an answer. I’m not interested in a diagnosis (although a conservative response to AQ currently gives me Aspie 118/200, NT 110/200 – ‘you seem to have traits of both’), but at 48 hopefully some self awareness of what is going on in my brain/body might help me avoid some disasters.
That’s probably more than enough for one post – apologies for the ramble – and thanks!
Thank you for the kind words. Accessibility is really important to me, both for readers who are on the spectrum and their family members and friends.
I felt the same way about Rudy Simone’s list of traits when I first found it! Although I’ve become a bit critical of some of the things on the list since learning more about Asperger’s, that list was my first hint that there was a different presentation of Asperger’s from the more stereotypical versions I’d been reading about online. It was a huge eye opener and very reassuring.
You’re likely right that your “mixed” score indicates that you’ve learned a lot of coping strategies that mask some of your traits and make your Aspie score lower. I think more important than a diagnosis for a lot of people is the possibilities that the knowledge can open up. Learning more about traits you relate to and discovering potential coping strategies or just feeling like you’re not alone can be so powerful.
Good luck with your self-discovery!
Following on from my last comment and saying that my best hope was for some self awareness, I wasn’t expecting anything dramatic, but I thought I should share what happened this week. Sorry it’s another long one – I’m not usually this chatty – honest!
I was at the shopping mall. I had gone early morning to avoid crowds, it was a hot day but I’d remembered to stop and have a drink. I’d been shopping for a couple of hours but I had got most things on my list. I went into a shop that I had a couple of £10 vouchers for, and I know from experience that this store has fiendishly complicated rules about offers, so I made sure to check with the sale assistant that it was OK to use both my coupon and loyalty card bonus on the same transaction. I gathered a basket of stuff, carefully calculating my minimum spend and took it to the till.
The assistant rung up the goods, and told me I needed to spend another £5 to qualify, so I chose another item, then she told me I couldn’t use both coupons together and suggested that I just use one coupon. She began to talk faster and faster, running through alternative combinations of items and suggestions of which offer I should use. I was feeling bamboozled, I couldn’t follow her logic and all her suggestions seemed to end up with me paying more than I expected, and I now didn’t want the extra item she had made me choose.
I felt a funny, fizzy, feeling beginning in my shoulders, going up towards my head. My best analogy is that it felt like when you begin to open a screw top soda bottle and see the bubbles rising and realize it is going to spray everywhere. It was a warning, like a migraine aura, but about 24 seconds warning, not 24 hours! And only, ONLY, because I have spent every spare minute of the last few weeks reading your blog did I realise what was happening – I was having a meltdown. I didn’t want this – I knew how it went – I lost my temper, thrust the unpaid for goods at the hapless shop assistant, shouted, swore or just burst into incoherent tears and stormed off, probably only to realize a few moments later that I had left something important like a credit card or a toddler in the shop and had to go back and make a grovelling apology.
So in my 24 seconds grace I did the equivalent of quickly screwing the lid back on the soda bottle and putting it carefully in the sink to settle. I took a deep breath. There was no queue behind me. I smiled at the assistant and said “I know it’s silly, but I’m getting really confused by this and it’s making me very stressed. Please can you cancel the transaction and give me a minute to work out which offer I want?”. She wasn’t very pleased (I guess she thought she might lose the sale), and probably thought me rather odd, but she did as I asked. I changed my selection, we put the items through again carefully, and lo and behold both offers worked. We even managed to laugh about it.
So, one meltdown averted – I think that’s a first for me (I didn’t even know they were meltdowns or what caused them two weeks ago!). I’m not sure what the emotional cost to me was, as I continued to feel a bit odd and fizzy for the rest of the day, but surely better than a meltdown.
I realize it’s nearly always ‘special offers’ not working, on top of a busy, tiring shop that do this to me – maybe I should just resign myself to life without coupons!
I do this so often and been doing it for so long, the re-caping the bottle, that when I first heard about autism and asperger one of the big “well I don’t have it” was meltdowns. Retreat, deep breath, shudder away the skin crawling sensation and continue. Only you are borderline meltdown-y for the rest of the day (every noise, every light) and tired as heck at the end of the day. But way better than a meltdown. I’m happy you figured it out!
Thanks Kay! It’s really helpful to know someone else experiences it in a similar way.
Your story made me smile. It feels so good to have those moments of realization that “I can do something about this” and then actually do it and have it come out well. The really awesome thing is that once you start recognizing the signs and learning what steps work best for you, it gets easier and becomes more natural and happens more often. I’m really happy for you!
I do know that there are certain types of meltdowns that even if I head them off will come back to haunt me later–it’s more of a postponement than a true aversion, but it’s nice to be able to walk back from that ledge in public and then have a good cry later in private. 🙂
And I’m sorry this has taken me forever to reply to. Long comments are a bit rough for me lately, since my reading comprehension is all screwy, so I save them for “good” days, of which today is one.
Thank you for sharing this description Random Pattern. As I read your description, and then Kay’s I wondered about Meltdowns. And I had to agree with Kay, that up till this moment I had questioned that meltdowns were not something I have had. Then I reread your description Random Pattern and I have what you explained happen to me a few times a year, at least. I’ve not linked it to overload in the past and now I am wondering. I was diagnosed with Complex Partial Seizures (Epilepsy) last summer (2013) when I had brain activity during an EEG that is typical for Epilepsy. I have two brothers who have had larger, more visible seizures (Tonic-Clonic) since childhood and that lead me to testing last year when I explained that I had had these funny feelings since childhood. What you are describing I know as seizures. It does make me wonder after reading your description how the two are related (seizures and meltdowns) and if they are one in the same. Does a meltdown have to be triggered by a known outside stressor such as you describe, or does our internal system just get so stressed that it just has a meltdown. I have heard that stress and sleeplessness can contribute to seizures for people with epilepsy. I am still new to that diagnosis for me so I’m still putting together the pieces for that and what my triggers might be, if any that I can point to. Now I’m wondering if the two are related because what I know as a seizure sure sounds like what you are describing. For me dizziness is also a part of it, and a feeling like I am being sucked through the back of my head. The way I describe it is like one of those old fashioned compasses that people would put on the dashboard of their cars to know which way they were traveling when driving. The compass was suspended in water and it would bob all over the place as it turned with the direction you were headed. My brain feels like that, like it is swimming inside my head and bobbling all over the place. Not a fun sensation at all. So appreciate of this community.
Whoa! – interesting – and a bit scary for me! I had also been wondering about connections between seizures and ASD meltdown/shutdown. I know the two to occur together as symptoms (co-morbiditiy – I hate that word – it sounds so… well… morbid), but not sure about them actually being the same thing.
I hadn’t thought about meltdowns so much though – although from the sensations I have there is clearly some odd brain activity occurring.
The one that had struck me was the similarity of description with a shutdown and a petit mal (as I understand it the less visible of the seizures) – I’m not even sure if that is the current term. I am certainly prone to ‘faze out’ and stare off into the distance for prolonged periods of time, and have had people come up to me and ask if I am OK during this. Generally I feel fine and have just been thinking, but unaware of my surroundings, but others seem to find it disturbing. My son also does this, especially if he has low blood sugar.
I have also been a ‘fainter’ since childhood, and I’ve wondered recently if some of my faints have been something other then that, although I have certainly never had a full blown visible epileptic fit. I am also increasingly suffering migraines, which again seems like unusual brain activity.
Interesting…
And just to say that I think you are right – the meltdown triggers definitely work on a threshold system – so while a busy railway station with people pushing and shoving may be tolerable on it’s own, a busy railway station plus loud music, plus wrong temperature, plus I’m hungry, may be an altogether different story and I have to stop myself from yelling at people who bump into me.
Random Pattern, I am with you on both of your comments above. Sorry it what I shared was a little frightening. Me trying to understand myself and share what I have learned with others and sometimes I put my foot in it, or share too much (can’t remember what this is called). I do think that the whole thing – epilepsy – brain is related in the grand scheme of things. How could it not when Autism is neurological as is epilepsy.
For me, as I have come to understand epilepsy, and myself as having it, it’s eased my my mind. Symptoms I have had all of my life now have explanations, and because they have explanation’s I can recognize them when they take place, rather than freaking out and being so scared when that feeling happens that means I’m having some bit of something related to a seizure. Knowledge is empowering. And yes, I agree, it’s one thing to have the radio on in the car when I am driving, it’s another to have the radio on, and be in high traffic, and it’s snowing, and my husband is driving. I have to turn the radio off, and sometimes close my eyes.
To answer your question, what used to be called Petit Mal seizures are now called Complex Seizures. Either Simple Partial Seizures or Complex Partial Seizures. The type that I was diagnosed with are the latter, Complex Partial Seizures. This was based on what was seen during an EEG of my brain which is one of the ways that Epilepsy can be diagnosed. I was just lucky that I was having seizure activity during the testing (I was being tested because I thought I might have epilepsy after learning my brothers had it).
The seizures that my brothers had were called Grand Mal seizures back in the 60’s and 70’s. Now they are called Tonic Clonic for the way that a person will often lose consciousness and have body movement.
I’ve learned a lot since my diagnosis in 2013 and while there are some parts that still are a challenge because of this diagnosis, I am glad I know. Epilepsy, like being diagnosed with Autism ( Yesterday – December 4th, 2014 at just before 11AM I received my diagnosis) is a label I can give to a set of symptoms that I have, and understanding brings me so much peace.
I do continue to shake my head in wonder that both of these diagnosis were missed in me till I started questioning, in my 50’s and recognized myself, then got an official medical diagnosis that confirmed what I knew.
More here on the ins and outs of epilepsy. It was a site I found very helpful, and much more so than the little my doctor who diagnosed me shared with me.
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures
Hi! I apologize for not using my real name, but I’m trying to be conscious of my digital tracks when talking about ASD for now. A couple of years ago I started to suspect that I was on the spectrum. After tons and tons of research I finally came to accept it as truth and as a result have learned so much about myself. Today I know, without a doubt, that I am autistic, however I have been unable to get a formal diagnosis.
I finished reading your book, and must say that it made me feel better about how hard the journey can be. There was comfort in knowing that I’m not the only one who has struggled with getting a diagnosis. After saving up for a very expensive session, I came out with *several* diagnoses, but none of them ASD. I was absolutely devastated. The clinic claimed to screen adults, but after going through the process (which was emotionally taxing and difficult), it was clear that they weren’t prepared to deal with anyone over the age of 21. It made me even question my own reasoning for a long time after. As much as I would like to seek out a second opinion, I can’t afford to do that again, neither financially nor emotionally. At least not right now or in the foreseeable future. I’d also have to travel as that was the only place within the state that even claims to see adults for ASD, and none of my local support groups have any connections or recommendations either.
So as it stands I am self-diagnosed, and mostly okay with that. The thing that I struggle with, however, is being able to be open about it. Even though there’s not a doubt in my mind, nor my partner’s mind, that I am on the spectrum, the fact that I don’t have a formal diagnosis makes me scared to tell anyone or be open about it simply because I don’t have “proof” beyond my own discovery. I know the first thing that I’ll be asked is “how did you get diagnosed” or “when did you get your diagnosis.” And I’m not sure explaining that I don’t actually have one will be the best answer to that. The thing is I *want* to be able to write publicly about it, share my stories, and be open about a burden that I’ve now learned to accept and be proud of. However, I feel silenced by the fact that I don’t have that formal approval from an “expert.” I fear that I’ll be pointed to as a fraud, made an example of (as what not to do), and that nothing I speak of will ever be considered valid because of that missing proof.
I’ve spent some time on forums trying to talk about this, and it seems that self-diagnosis is frowned upon at least among the message boards I did explore. Unfortunately, until I am in a well enough financial and emotional position to be able to seek out a diagnosis from a professional in another state, all I have is my own evaluation based on what I know of myself. And hey, we know ourselves better than anyone else, right? So I guess what I’m wondering is, while you did talk about in your book that formal diagnosis is not for everyone and that self-diagnosis is okay (and I thank you so much for saying that), how do you feel about those who have self-diagnosed becoming advocates? Is a formal diagnosis necessary in order to write and speak and be open about living with ASD, and would being an advocate while only being self-diagnosis be considered a disservice to the community and lack credibility? I’d love to know what you think. Thank you!
Anonymous comments are always welcome and I totally understand about your concerns regarding disclosure.
I’m glad you found the book comforting – that was one of my primary goals in writing it. Your experience with diagnosis sounds so frustrating and discouraging. Sadly there are still a lot of mental health professionals who are basically clueless about adult autism.
Self-diagnosis gets mixed reactions online. Some communities (like this one) are very accepting of it (when done with diligence of course) and others are vehemently against it. In “real life” however, I think people are both less informed and less critical. The number one question I get when disclosing that I was diagnosed in my forties is “What made you seek out a diagnosis” or something similar. People are much more interested in the why of it than the technical aspects of when and how. The only person who ever asked me who diagnosed me was my GP.
If you feel comfortable with your self-diagnosis, I think it’s fine for you to identify as such and embark on advocacy. I know quite a few people online who are self-diagnosed and openly identify as autistic. You may get some resistance from some people but even formally diagnosed adults have their diagnosis questioned by ignorant people (often because we don’t seem “autistic enough” or some nonsense like that).
I’m awaiting a diagnosis consultation (am beginning to think they’ve forgotten about me) and while I’m happy to tell people that I don’t know well that I have ASD, I’m not confident enough to tell family and friends etc. because, like you, I know there will be questions and questionning – people won’t believe because I pass too well (I assume) and I only get to be me, stimming and all, at home out of sight. I feel that I need the validation that a professional diagnosis will bring and I’m scared that if I don’t get it I’ll be stuck in limbo in my own head.
All that aside, there seem to be plenty of people around here who have self-diagnosed and who either are. like me, waiting, or have chosen not to pursue a diagnosis or can’t afford / access the facilities. I’d hope that any decent person wouldn’t judge another Aspie just because they didn’t have that bit of paper saying ‘congratulations, you’re an Aspie’…
Medical professionals are not perfect or all-seeing, all-knowledgeable souls. Some quite frankly shouldn’t be allowed near the public. They make mistakes. Don’t doubt yourself because if you’re certain then that’s what counts.
I’ll also add to Liz’s great comment that most adults self-diagnose by necessity before getting a formal diagnosis, so there’s that. I felt mostly confident in my self-diagnosis by the time I started the process of seeking out an evaluation and the doctor who diagnosed me even jokingly said, “good diagnosis, doctor” to me after giving me his opinion.
I think it’s rare that anyone who has gone through a fairly rigorous self-diagnosis process and feels confident with the results is wrong about their conclusion.
A few facts first; I’m a month shy of being 74 years old. I’m male, very happily married and with 3 children. 10 or 12 years ago I heard someone discussing Asperger’s on NPR and the conversation resonated with me. I began, in a small way, to gather more knowledge of the subject. The more I read the more I felt that ‘Asperger’s’ answered my questions about my childhood and my life to that point. I used the AQ and had scores of 38 and 36. The lower score came when I persuaded my wife to verify my answers. We didn’t disagree much at all. After retirement, I began painting with a small group of 8 other painters and one day I mentioned that I thought I might have Asperger’s. 4 of the 8 said ‘Duh! Of course you do.’ These 4 had all spent time working with people on the spectrum. Three of others had no opinion and the 4th was shocked that I would think of something like that.
At my age i have no interest in gaining an official diagnosis. Dr. Attwood, in his book, makes a point of validating self diagnosis and I’m comfortable with that. Unfortunately, my family isn’t. My wife agrees with me but doesn’t want to talk about it anymore. My oldest daughter, who I suspect has ASD, told me that I don’t have Asperger’s, I was simply ‘eccentric’.
Getting to the point here…I found your book and it now resides within my Kindle. I had to stop myself from reading it all at one sitting. I’m savoring it! Thank you for writing something for adults on the spectrum.
So glad you enjoyed the book and found it useful! Your situation is a great example of why respecting self-diagnosis is important. It’s great that you’ve found an explanation for your differences and you’re comfortable with your conclusion. Better late than never, right?
Is there a reason that Part 2 is not a link? Or am I missing it somewhere else?
Part 2 is in the book/ebook but not posted on the blog
Hi Cynthia, I wanted to email you directly, but can’t find an address, so I’ll put this here!
Basically, I just wanted to say a huge ‘THANK YOU’ to you for your blog, especially the courage you’ve shown.
I’m male, 44, and today, I got a diagnosis of Aspergers. I just spent two hours talking with a psychologist with my wife there to support me (who has been, and is amazing).
This is the culmination of a 2 year journey of self discovery aided massively by your writing.
Your commenters have been amazing too – a mine of further useful information!
Thank you again, your words have made a great difference to me,
Onwards and upwards!
Chris.
You’re very welcome! Congratulations on the diagnosis! I’m so happy to hear that my blog made a difference for you.
Great news! Really pleased for you 🙂
Hi Cynthia,
Thanks for your quick and thoughtful reply! Your message was spot on and was very helpful. I fine with bluntness — I’m glad you spoke honestly instead of softening your message. And one of the things I appreciate about you is that I finally had the chance to talk to a fellow Aspie – someone who really understands based on their own life experiences. As you know it can be very lonely being an Aspie amongst NTs. Anyway, thanks again!
Best Wishes,
Bill Anderson
Thank you 🙂
Okay, Help Cynthia : ) I bought and am reading I think I Might Be Autistic. It’s deepening my understanding of me and my traits even more and I’m grateful you’ve written it. I’m taking notes and highlighting as I read in preparing for the testing part of my diagnosis. I just came across something that I had not seen before and it is something that I do and have struggled with always – and I’ve particularity noticed it as an adult – as a wife and mother. I rarely talk to my husband or kids by name. I feel very uncomfortable using their names, and instead say honey, or sweetie. I’ve always been that way with my husband. When my kids were little I was more at ease with calling them by their names but still preferred sweetie or honey, or cutie pie or some kind of pet name. If it’s dinner time and the kids are home or visiting I can call upstairs or down to them to let them know dinner is ready and use their names but otherwise I tend not to. It’s uncomfortable for me to do so, and when I have forced it, I always have the same sort of uncomfortable feeling I have when I try to make eye contact with someone.
I thought this was another one of my odd quirks and now I see you mentioned it in chapter 2 of your book, “Do you have difficulty referring to others by name?” This is part of Autism??? Why do we do this??? Thank you ❤
Update, Yesterday, December 4th, 2014 at just before 11AM I received my diagnosis. After 53 years of not knowing, I now know, I am on the spectrum, and were we still using the term Aspergers, that would be my official diagnosis. As it is I am called, Autism Spectrum Disorder, Mild, aka, as my doctor says, who has been diagnosis and treating for over 15 years, Aspergers. Just call me Aspie. Thanks for this amazing community. I am so happy to be a part of it!
Congratulations!!! I’m so happy you found us and have become such an active and enthusiastic contributor. 🙂
Thank you! I know I am posting a bunch today. I am just blooming with gratitude. There is a part of me who is listening to an old voice that is saying ” quiet – you are saying to much” but I know those are old judgements. I know it’s a process as I settle in to my understanding of me. Thank you again for starting this community and for all that you have done to make it the place that it is. It, and both of your books have been an important part of my diagnostic journey. : )
There’s no such thing as saying too much here. Post away! 🙂 Your enthusiasm is contagious.
Thanks!!!
Do you know of any good books you would recommend for a late 20’s guy whose mother (me) was just diganosed an Aspie, and who may be one too. I want to introduce this information in a relateable way.
He and his friends consider themselves nerdish, intelligent 20 somethings. Thanks! 🙂
Tony Attwood’s “Complete Guide to Asperger’s Syndrome” is approachable but perhaps boring for a younger person who doesn’t have a strong interest in the subject. “Asperger’s From the Inside Out” is also a good “guy” book though not quite as thorough or as well organized.
Thanks! I have Tony’s on my iPad. I was hoping for something closer to his age and language. Like one nerd or geek to another – which might be hoping for too much, but it does give me some ideas of other places to look. I’ll check out the other title too.
Ah, got it. There’s also “Freaks, Geeks and Asperger’s Syndrome” which is aimed at teens, so might skew a little young. I haven’t read it, but it’s very popular and is written by an autistic young man, so maybe a possibility.
Great! I’ll check that one out too.
Just wanted to say thanks again. I ended up buying four copies of your book for each member of my family. One for each of my kids (all adults) and one for my husband (I bought my copy back in early December and have it on my Mac-Kindle). I know that your book will serve all of them well.
You’re welcome! Thank you for sharing the book with so many people in your life! 🙂
Having spoken to a lot of people with Aspergers (diagnosed or self-diagnosed), it quickly becomes apparent that the “extreme male brain theory” and the lack of “emotional empathy” are outdated and don’t reflect reality. I have an SQ of 114 (off top end of the scale), and poor social skills, however am incredibly senstitive and very caring (unypically so for a man). If I conduct a female/male brain test – my brain is more female. I like poetry, flowers, pattened fabrics, and really enjoy caring for others, and talking about emotions, and cry at sad films. In other ways I am more masculine, not bad at DIY, interested in the mechanics of everything and a big football fan (but then none of thse traits are gender-specific). So my perpsective is not to look into specific theories and genealisations about ASD, but to realise even thorugh you are an Aspie you are a caring individual not a robot who can be defined by tick box tests devised by NT professors!
I want to say thank you for writing this – all of this. I realised only a few months ago that I probably had Asperger’s / autism. Like you I had been “in denial” about it for a very long time; like you, as soon as I looked into it properly, I found all the “little things” that no one associates with autism that described my life down to a tee. The realisation broke me down in a way I’ve never experienced before: without going into details, I think I’m lucky still to have a job.
One of the hardest things about it, when I got over the initial shock (anger? grief?), was finding information on how to cope! I’m facing a long wait for assessment and diagnosis, without which I can’t go about looking for support or “reasonable accommodations”. Your blog has helped me immeasurably, not only in navigating the procedure for diagnosis, but in understanding and articulating the things I find difficult – and even finding some coping strategies to try! It is making so much difference in the disaster-area of my work to be able to explain things to my manager and what might help. I kept quiet for so long because I didn’t know anything that would help me. So thank you.
I am so glad that I found your blog. I have always known there was something different with me. I hate small talk but can talk for hours about things that don’t interest most people. I’ve always noticed details that other people don’t notice. I don’t like looking people in the eyes. I have a monotone speaking voice. I don’t like physical contact. As a kid I was diagnosed with ADHD and learning difficulties and I think an aspie diagnosis was overlooked. So many of the traits you mention in your blog hit close to home. I too hate talking on the phone and find it extremely challenging. I’ve decided that I want to know either way but an aspie diagnosis would explain a lot of my experiences and it would help me make sense of things.
Hi Sarah:
Small talk is tortuous, especially at a party(!!) I might find myself at. There are so many aspects of the spectrum. There are many I don’t identify with at all (eg, talking on the phone) but some I do. I have always wondered why I crave being alone and AS helps to explain that. I for some reason don’t seem to have the NEED to socialize. I can see that many need and want that but I just don’t understand why. It’s upsetting to be different but, oh well, can’t change that today. I guess I diagnose would be useful but whether or not I get one won’t change who I am (sorry, I know that’s trite). Best of luck to you.
I can honestly say that I never find myself at parties 🙂 I would rather go to the dentist because at least there the small talk is minimal, there are few people and once the examination or treatment is over it’s not just acceptable but actually expected that you’ll leave!
I hate having to make phone calls but I am SOOOOOOO with you on the not having the need to socialise. The only reason that I’ll occasionally meet up with a friend is because I feel obliged to make the effort to retain them as friends (and that because society expects me to have friends). I don’t think ‘oh great, I get to go make conversation’ because I struggle to think of anything that they’ll be vaguely interested in. They say ‘so what have you been up to?’ and I’ll be stuck erming and ahhing and groping around for something intelligent to say. How anyone finds that fun I don’t know. I’m far happier at home, in my head or reading or doing something that I enjoy. The only thing that bothers me about it is that I’m scared that as I get older I’ll struggle to cope and not have any sort of support network as I don’t have any close family other than my parents.
I have thought for a long time that my partner is definitely on the autistic spectrum but he is such a proud man and doesn’t take any slightly negative comments well, I have tried talking about it a few times and everytime he gets defensive and says “I’m not stupid” “I’m not a retard” and it’s never what am I saying at all, he just hears the words and associates it with bad things, it is soo hard as we are really struggling with our relationship for obvious reasons and I think the only way we will be able to move forwards is if he realises he could possibly be on the spectrum and it might help him realise why he struggles with so many things and why he finds being in a relationship so difficult. If I knew definitely that he was on the spectrum I think it would also help me understand him and not get so upset as angry when he doesn’t understand things or when he comes across as being rude and insensitive when he just really doesn’t know what to do. I don’t know if you have any ideas or tips as the best way of getting through to someone and getting them to realise without them taking it as an insult, it’s soooo hard.
I am just learning about the spectrum and it seems my wife and older daughter are on the spectrum. Not officially assessed yet but working that way after self diagnosis. I desire to learn as much as I can as a father and husband to be a great supporter! Any advice and links for the journey would be greatly appreciated! I have supported my family for 30 years with out knowing why things are the way they are. It has not been easy for them. Thank you for sharing your story and making a place for others to share and learn from each other! What a gift you are! How does one fund assessment? Is this kind of assessment covered by medical insurance plans? Once the assessment is done how safe is that information?
My origin story: At about 40 years of age, I was self-diagnosed, after a friend who was a social worker said that they thought I had all the signs of it. (So maybe friend-diagnosed?) Before then, I had no idea what was wrong with me and was misdiagnosed by clueless doctors since childhood, given experimental drugs, etc.
As a true Aspie, I then researched everything I could about the subject. I then printed out all of my findings, and took this ream of notes down to my doctor, thrust it at him and said, “Here, read this. I think this is me.” At my next appointment he said, “I think you are right.” 🙂
Now that I had an idea what the problem was, I set about on tasks to improve it. Engaging in social activities (karaoke being my favorite), taking martial arts and dance classes to improve motor skills (had to drop dance, couldn’t handle touching other people), etc. Most people don’t even realize I’m AS anymore, though the gaze avoidance/staring thing is the most obvious tell.
Oh, damn, this is a lot of work and money for a diagnosis. I’m lucky if I can manage all the steps to paying a parking fine or figuring out how to bills. If I do get a professional, official, on-paper diagnosis it’s going to be when I’m old and rich and I’m not juggling schoolwork and research and trying to figure out how to do jury duty without going to jail for not doing something correctly. I might not ever get that piece of paper, actually. I mean, that’s a lot of money just to tell me something I already know. My family knows. My psychotherapist knows (and did talk to me about diagnosis and that my insurance wouldn’t cover it). I’ve done an exhausting amount of research just to “make sure” I am 100% autistic. Any, yep, I am. Beyond expense and difficulty, I’m also kind of uncomfortable with the medicalization of autism? Plus I’m not sure what I’d get from an official diagnosis? They don’t prescribe you with “Allism pills” or anything (which I wouldn’t want, anyway). I’m finishing up school so that’s a “no” for accommodations there. ABA therapy is basically institutionalized abuse, so I wouldn’t sign up for that, either. I’m already struggling to undo a lot of behavior suppression that got conditioned into me by my peers, teachers, relatives, society, etc. And I do have a therapist. The kind that just sort of talks you through stuff and helps you get things done, unburden, whatever. And she knows I’m autistic and does her best to keep that in mind while she’s working with me. I’ve been self-diagnosed for more than a few years now (and unofficially diagnosed by a professional–no paper, but confirmation). The only people who might get fussy about me not having that piece of paper are probably strangers and relatives I don’t like anyway, so, yeah, no way in Hell I’m getting diagnosed for their benefit. Actually, if I’m being honest, besides the $2,000 expense and all the effort and the stress, I think I’m also largely motivated not to get an official diagnosis by…spite. Like, it might not be healthy, but I do have a habit of refusing to do things just because people want to make me do them. Especially if they don’t actually listen to my side of things, or keep talking over me, or claim a superior position, or try to manipulate me into doing it in some kind of weird power play. And I swear, if any old aunt of mine says anything along the lines of “But I know what’s best for you,” ONE MORE TIME, I’m going to flip a lid. I’m just lucky my dad’s so chill. If I had to live with one particular aunt, I’d probably…run away, actually. Become a goat hermit or something. But this guide is really informative and useful and if my spite ever wears off and I get back from being a goat hermit, I’ll definitely look this up and go over it before pursuing an official diagnosis :3
I like the idea of being a goat hermit!
I’m lucky that, being in the UK, I didn’t have to pay for my diagnosis. I did it because, like I said up thread when I was still waiting, I needed the validation to be able to tell people. It’s given me the confidence to be able to mention it and that’s been necessary recently because I’ve needed help to be able to get through a situation; I needed to find a workaround because of my anxiety and people have been willing to help because I have a label that, on some level, they understand.
Did the “Types of Assessments” page disappear?
Hi there, whoever reads this. I had a funny experience recently, and a neighbour said it was typical ”Asperger behaviour”. I was never diagnosed as such and today I am well beyond retirement age, but the comment seems to explain some peculiarities in my life. So I´ll tell you the episode and would be interested in any comments.
I never liked the doctors´ custom of taking one blood pressure reading and prescribe pills on the basis of that. Blood pressure fluctuates a lot. So I prepared for my next visit to the doctor by taking 3-4 readings a day for two weeks and put them in a log. On my way to her, bringing the log, I met the vicar of our village. He knows me well since he comes to visit each birthday (which seem to happen more and more often these days).
So he said, ”How are you doing these days?” The reply was obvious. I took out the log and said, ”Well, just look at these readings, I think I am reasonably Ok.”
He looked confused, apparently that was not the kind of reply he had expected. Turned his back and rejoined the others with him.
But when I told the doctor about it half an hour later, she thought it was quite fun. So I read a bit about Asperger on the internet, and much of it seems to explain various personal experiences for half a century. I have just ordered Cynthia´s book and may call again when I have read it.
It does sound very Aspie 🙂 (And, I might say, far more sensible than the usual ‘I’m fine, how are you’ crap that seems to be expected!). You can actually have a proper meaningful conversation from it.
(Cynthia’s book is fab)
Thank you, Liz,
Another peculiarity is the apparent chasm between intellect and emotion. I tend to worry and develop a bad conscience about insignificant events and situations that I realise are not worth worrying about, and I am not to blame. Like when the store was sold out on the cat´s favourite food, so she had to go without it over the weekend. It disturbed me that there was no way to tell her the reason and promise to get it on Monday. Is this Aspie? It´s bloody uncomfortable and unecessary. Seems to have developed in the last few years, wasn´t like that in my youth.
Well it’s certainly another thing I do! It’s always the little things that bother me the most. My dog has gone deaf and it really bothers me that she can’t hear me tell her I love her, despite the fact that although she could hear me before, she had no idea if I was saying ‘I love you’ or ‘Do you want another treat?’ or ‘You stink, what have you eaten?’. And as for trying to explain to eldest cat that the trip to the vets to have more teeth out would be over quickly and was really for the best long-term….. It’s hideous. The guilt can be overwhelming. And it does seem worse as an adult, though maybe that’s because our priorities change or something?
I have officially been diagnosed, ASD Level 1.
I want to thank you for your book and the help it has given in preparing for my assessment.
I am a transgender woman and a single mother, age 53.
At 76 I just discovered I’m an “aspie.” As with others, the discovery has explained A LOT about my life. I know when I was younger I would say the wrong thing to people all the time, and no wonder. I still do that. it’s 14 out today, and instead of texting “are you cold?” I ask “what are the conditions in your house, temperature-wise.”