Part 5 in the I Think I Might Be Autistic Series
Whether you choose to seek a diagnosis or not is a personal decision. As an adult, there’s a good chance you don’t need a diagnosis. You’ve done your research, come to the conclusion that you’re on the spectrum and that’s good enough for you.
This is commonly known as self-diagnosis and when done correctly, it’s largely a well-respected approach in the ASD community. The primary reason? Getting an official diagnosis as an adult is difficult:
- Asperger’s Syndrome and autism present differently in adults than in children. Finding someone trained and experienced in adult diagnosis can be challenging.
- Many adults face numerous misdiagnoses before getting correctly diagnosed with Asperger’s or autism.
- Women in particular are often misdiagnosed because they present differently than male aspies on whom the traditional model is based.
- Diagnosis can be expensive and an adult evaluation isn’t covered by most health insurance.
- Diagnosis can lead to bias, stigma and/or create practical limitations, like not being able to join the military or having your parental rights questioned.
So how does self-diagnosis work? First, be prepared to do some work. Self-diagnosis isn’t as simple as taking the AQ and deciding you’re an aspie. Screening questionnaires can be a good place to start, but they’re just that: a first step.
Here are some additional steps you can take to verify, challenge or test out your belief/suspicion that you’re on the spectrum:
- Look at the DSM and/or ICD criteria for ASD (DSM-IV-TR criteria for Asperger’s and ASD, DSM-V criteria for ASD,ICD-10 criteria for Asperger’s and ASD).
- Be sure you understand what each of the criteria means. ASD criteria manifest differently in adults than in children, so look for examples of adult traits when considering whether the diagnostic criteria applies to you. It may also be helpful to think back to your childhood and try to determine whether you met the early signs of autism.
- Read books on the subject, both nonfiction (like The Complete Guide to Asperger’s Syndrome) and personal narratives (like Pretending to Be Normal or The Journal of Best Practices).
- Read about the experiences of Autistic adults (scroll to the bottom of the linked post for a list of Autistic bloggers). If possible, talk with one or more Autistic adults. Comparing experiences with diagnosed adults can be validating. Also, there are many Autistic adults online (Tumblr, Twitter, Facebook, bloggers) who are happy to answer questions about specific aspects of autism and being autistic. Just keep in mind that Autistic adults are people too and we have a broad range of opinions as well as differing comfort levels when it comes to sharing our personal experiences.
- Make a realistic assessment of your AS/autistic traits based on your reading.
- Talk with one or more trusted persons in your life about your self-assessment. Do they see the same traits that you’re perceiving? Share a list of ASD traits (female ASD traits) with them. Do they see traits that you haven’t considered?
- If you have access to childhood materials like report cards, school work, a baby book or old home movies/videos, review them in light of the childhood symptoms of AS/autism.
- If possible (and if you feel comfortable) ask your parents about your childhood. If you don’t want to frame your questions in terms of autistic symptoms, you could simply ask things like “Did my teachers say I [did X or behaved like Y]?” or “Do you remember me doing [X, Y or Z] when I was a toddler?”
As you do your research, keep in mind that not everyone has every symptom. Symptoms can change in severity and presentation over a lifetime, becoming either more or less noticeable with age. In fact, it’s not unusual to find that as you age, one trait (like sensory sensitivities) becomes more manageable while another (like executive dysfunction) increases in severity.
By the time you’ve completed your research, you should have a good idea of whether Asperger’s syndrome or autism is a good fit for you. Many adults are content with this and choose to self-identify as aspie or autistic based on their self-discovery process. Others feel the need (or have a specific reason) to seek out a professional diagnosis, which can be a long and difficult journey.
Even if you choose to pursue a professional diagnosis, you may want to work through the self-discovery process first. Often, getting diagnosed as an adult requires making a solid case for why you think an autism diagnosis fits you.
Weighing Self- vs. Professional Diagnosis
- Obtaining a diagnosis as an adult can be very difficult.
- Not everyone needs or wants a professional diagnosis.
- Self-diagnosis is widely accepted in the autism community when done with diligence.
- Self-discovery is a good first step toward professional diagnosis if you choose to pursue it.
Next in the series: Seeking a professional diagnosis
57 thoughts on “Adult ASD: Self-diagnosis or Professional Diagnosis?”
I was professionally diagnosed as having Asperger’s late last August at age 32, after doing a lot of research and reading on my own. Thankfully I was able to fairly easily find a clinical psychologist who specialises in Asperger’s and autism, and treats adults. I was also able to take advantage of a government subsidy that greatly reduced the cost of my seeing her.
I sought an official diagnosis just to know for myself one way or the other. A handful of close friends and my girlfriend are aware of my diagnosis but no one else. My girlfriend almost certainly has Asperger’s also, which probably explains why we get along so well.
While I was fairly comfortable with my self-diagnosis, the official diagnosis made it more … real, if that makes sense. I wasn’t just making excuses for my behaviour or lack of social skills or any number of odd quirks I have – there was an actual reason. Finally knowing why I have felt out of step with the entire world my whole life was a huge relief.
I’ve continued to read and research, and will likely keep doing so for the rest of my life. I’ve always been driven to try and understand the ‘why’ behind, well, everything. I still have plenty of ‘oh, that’s so me’ moments when I read a list of traits, or the experiences of another person on the spectrum.
I feel for me that knowing will help me cope more with day-to-day because I have more of an understanding of how and why I act and react to situations and people the way I do. I certainly feel far more at home in my own skin than I used to.
@unraveled_ ‘s experience is very similar to mine. Adult Aspie — undetected as a kid — except that I still haven’t sought a formal diagnosis. However, the more I’ve “come out” with others about my self-diagnosis, the more people have gotten comfortable with me, because they have a framework to understand my recognizable differences. It’s helped me advocate for myself and face situations where I used to melt down. It’s also helped me feel MUCH more at home in my own skin. Having a “why” is huge, and reading about how others have used that “why” to better their daily lives has literally transformed mine. Thanks!
I think you’ve really it on the biggest upside of self-diagnosis–the explanation and understanding it provides for ourselves and those around us. Knowing why we are the way we are is such a gift. Not to be overly dramatic but it felt like a rebirth for me. 🙂 I’m so glad it’s been such a positive experience for you as well!
Rebirth is the PERFECT term. It’s been a long journey, but over the two-year process of discovery, I was able to accept all of the past frustrations and plan for the future more wisely. What an amazing gift! I hope it is so for many others.
Lisa W England, I saw that you haven’t sought a diagnosis yet but have been able to “come out”! I have decided at this point not to seek out a formal diagnosis yet so I was wondering how you came out with your self-diagnosis and how people reacted?
Sadly I have been saying I suspected I have Asperger’s for ten years or more. I am now totally certain. Not a single person in my life will read about the subject (excepts my mum who separately self-diagnosed herself as Asperger’s) or attempt to understand my difficulties, I am totally ignored and considered an unworthwhile individual. They may consider it if I have a formal diagnosis and only then. I have been repeatedly bullied and accused of the most heinous behaviours by these very same people to the point I now live in total isolation. I know I am not the only Aspie with these experiences. I am so very glad you have supportive family and friends because it is important to read positive accounts from people on the Spectrum.
Freya, I am so sorry to hear about your experiences! I know this is common for people on the spectrum in many instances — but that doesn’t make it easier. Over the last few years, I’ve made it a point to distance myself from those who aren’t supportive and meet people who are. Those new people accept me and Asperger’s together because they don’t know any differently. It can help a lot! I hope you did those friends … And of course, you are always welcome here! 🙂
I have the same issues. Sorry.
Great Pietzsch, i feel your pain so clearly. I too can not get ANYONE to even consider i may be an aspie. I have grown children who resent their childhood with me and prefer to have little to do with me. I wish they could understand what made me act and react to life as I did, as I do. It’s a heartbreaking condition to live with. It has also been my greatest spiritual teacher. How to love myself when No One else does and how to forgive all those who simply “know not what they do”. Asperger’s and Autism have their own very particular set of problems, but so do the people who have suffered all the many forms of neglect and abuse that exist. I pray we ALL find the love inside to heal ourselves, so the healing of the world can begin.
My path to a diagnosis is much like yours. I was lucky enough to find a neuropsychologist familiar with adult diagnosis and I decided to seek an official diagnosis for the peace of mind I hoped it would give me. And all the rest of what you say here–our experiences are very similar. Since getting diagnosed I feel more secure in who I am and freer to be more myself. It’s a slow process of discover what that means, but a good one. I’m glad you’ve found your diagnosis to be a catalyst for growth and self-understanding!
Self-diagnosis is great when people around you accept your findings and accept you for who you said you are.
During my discovery period, I thought it would be comforting to seek out other Aspies but the general consensus towards self-diagnosis is negative, especially on Wrong Planet, which I can understand why. It is unfortunately the same for Asperger’s support networks that I know of over here in Australia, I’ve got the impression that self-diagnosis is not welcomed.
Apart from the hubby and an ex-boyfriend, none of my close friend whom I revealed my suspicious accept my self-diagnosis, it was “nonsense, you are perfectly normal” kind of response. Some went quiet and some I haven’t heard from since, I’ve learned to keep mum for now.
It is the same coming from my parents, I suppose no parents want to think they made an incomplete child? To them, I was just born “bad” – refuse to co-operate, temper tantrum, rude, fussy with things I would eat/wear and generally not an easy child like my brothers. I felt the only way to get them to acknowledge I didn’t do all that just to spike them is a professional diagnosis, I want them to accept me as me, especially mother, she just simply can’t understand why I don’t need to be surrounded by people all the time to feel contented.
Self-diagnosis alone is not enough for my situation, even after doing all that research I am not sure of my conclusion although I display a lot of symptoms, in this instance I see professional diagnosis as a validation and a second opinion (appointments coming up soon, now I am freaking out that it’s all in my head and to have the psychologist telling me exactly that!).
There is some bias against self-diagnosis, often by people who are professionally diagnosed, which is sad. I’m sorry you encountered so much resistance. There’s a lot of acceptance in the Tumblr community. I posted a short version of this post there and it’s gotten a very supportive response. But there’s a lot of nastiness on Tumblr too.
I completely understand your feelings that self-diagnosis isn’t enough. I sought out a professional diagnosis mainly for the peace of mind aspect of it. However, keep in mind that even when you do get a professional diagnosis, there will still be people who deny it’s valid. They’ll say that you’re misdiagnosed or should get another opinion or as you said “you’re perfectly normal.” It’s frustrating and demeaning to get these kinds of responses.
Disclosure in general is such a hard issue. I know what you mean about people mysteriously disappearing after you disclose to them. It’s almost as if they think it’s contagious! Good luck with your appointment. I was terrified that the psychologist would tell me it was all in my head, but he didn’t. In fact, he was quite receptive to the research I’d done and my reasoning, which was a relief. I hope you have a positive experience. Please let me know how it goes.
I have a self-diagnosis of Asperger’s syndrome and, as you say in your post, this is sufficient for me. I don’t need a professional diagnosis and just understanding more about AS has been really helpful in coping with the challenges (and, indeed, the opportunities) that it presents. One thing that I found very helpful in coming to my ‘diagnosis’ was the assistance of my wife, who was in a much better position than I was to make an objective assessment of my habits, traits and personal quirks. Indeed, it was she who, having watched a documentary on Aspergers, first suggested that I might have the condition.
I know quite a few people who are content with self-diagnosis and the understanding it gives them. It sounds like your wife is very supportive and accepting! When I was first learning more about AS, it was very helpful to be able to bounce things off my husband and get an objective view of whether the various traits seem to fit.
I’m not entirely sure how comfortable I’d be telling people other than immediate family I had ASD not having been professionally diagnosed. I accept self-diagnosis because I think for the most part, adults who are serious about figuring this out will have studied it voraciously, often far beyond many professionals and many adults who get professionally diagnosed were self-diagnosed first – so I have no problem with it. But I’ve also seen a faction of people for whom professional diagnosis is the ONLY way to claim ASD, and that makes it uncomfortable for those who don’t have that. I think I’m comfortable with myself right now not having a professional diagnosis, but there is no question that I’d be more comfortable and validated having one – I just don’t see it as feasible at this time.
I don’t think it would be an exaggeration to say that a majority of adults who get professionally diagnosed were self-diagnosed first. ASD just doesn’t seem like something that most medical/mental health professionals are quick to raise for adults.
I also agree that it would be hard to disclose publicly, especially in a work or school context, without a professional diagnosis. It’s frustrating that people have to go to such lengths to get professionally diagnosed and that for some it may always be out of reach. 😦
@musingsofanaspie: I posed this question to Lisa England as well, but how were the people you knew who were self-diagnosed able to disclose their diagnosis publicly? Did they identify as having Asperger’s, or did they reveal each their traits slowly, over time?
Generally they’ve either identified as “suspected aspie” or used phrases like “learned that I have Asperger’s” rather than using the words diagnosed or self-diagnosed.
But I also know of both self- and professionally diagnosed people who prefer to simply say things like “I have difficulty with large group situations” or “I’d prefer to sit somewhere quieter to chat because noisy rooms make it hard for me to concentrate on a conversation.” In that way, they disclose only what is necessary to facilitate a more successful interaction. So disclosure can take many forms and I’m increasingly feeling that, ultimately, how you come to identify as aspie/autistic might be no one’s business but your own.
“…used phrases like “learned that I have Asperger’s” rather than using the words diagnosed or self-diagnosed.”
I basically just did something similar. I was self diagnosed in my late forties, and when I was writing to a long time employer (I cleaned his house for from 1993-2013) I wrote: A couple of years back I found out I’m what’s called an adult Aspie [a person with previously undiagnosed Asperger’s]. A few ways that it manifests itself in me is that I tend to have fierce loyalty, a sort of childlike approach to things, being too honest, fear of change and taking things too literally.
At first my parents didn’t know what to think about my self diagnoses, so I asked them to do some reading on it. I didn’t want a diagnoses so I could have an excuse for bad behavior, but it was good to have an explanation for odd behaviors and habits. In the next conversation, my mother told me, upon reflecting my childhood, she could see that I was different. My father, not much with emotion, basically came to a similar conclusion.
It’s good to hear that your parents received the news so well. I’m curious how you told them, if you don’t mind me asking. Was it something that you sat them down and delivered like it was big news or something that you mentioned in passing? (I’m still wrestling with the disclosure issue myself.) Either way, it sounds like supplying them with background reading was a good way to “make your case.”
More and more I feel like self-diagnosis is a natural step for many of us. We know ourselves best and I haven’t yet come across someone who self-diagnosed without doing a great deal of research and hard thinking. And as you say, most of us are looking for an explanation, not excuses.
My parents have been divorced since I was 6 so I told them separately, on different days.
Here is the email response my dad sent me two years ago.
“I looked up AS and I also fit into the parameters. I think we are all subject to being bi-polar and we all prefer things to happen as we would schedule. Life doesn’t work the way we plan sometimes, if it did, Grandpa and Grandma would still be alive and healthy and living on Audrey and you and Jeff and I would live down the street. I read that many people overcome and live very productive lives which means that many people don’t ever overcome the syndrome. Looks to me that the future is all about overcoming or giving in. I believe that I tried my best to overcome any maladies that may have been inhereint or self inflicted in my life, so far. Knowing your intellect and determination, I would expect you to overcome this as you have overcome all other miseries in your life. Remember, if you have a malady, you may have children that share your genes and you may need to come to their aid. As a parent, it’s as much about them as you.
I LOVE YOU, DAD ”
I think it’s easier to understand/accept a broken arm than it is something that has always been there or is otherwise invisible… especially for parents and close family members.
Thank you for sharing your dad’s response. It strikes me as very aspie-like and very loving in his own way. He’s right about AS running in families and I think that can present its own challenges when sharing a diagnosis/self-diagnosis with parents. As you point out, there are some particular aspects of ASD that make it more challenging to share with family members, especially those who have always known us and were responsible for our care growing up.
I think it’s important you include a research on childhood behaviour and how others perceive you… I have PTSD and this has led to a whole series of “autistic traits” in my social interactions with others. when my son was diagnosed with Asperger’s, a friend who knows me well and for years (we also lived together) but met me only after my abuse situation started telling me that she thinks I also had ‘some form of ASD’. Sometimes, this is simply not the case and while I understand that a non-professional diagnosis is sometimes sufficient, I believe if your life is in any way concerned by what you feel could be ASD, you should definitively go see a professional.
Yes, I think looking back to childhood is essential. I’m lucky to still have many of my elementary school report cards and standardized test results as well as some home movies of my preschool years. When I looked back at them in light of childhood autism signs, I saw many things that fit.
I also think that people need to look beyond the social traits to the sensory and other physical traits, because as you said, other conditions can mimic some of the social traits.
I hope this doesn’t come out wrong, but while I think examining for PTSD is valuable, we do have to look objectively. I was told my whole life that my eccentricities were the result of being physically and verbally abused as a child, but when I re-examined everything in the light of day, including previous conversations with that parent, I came to realize that the word abuse was a bit strong for what physically occured, depending on one’s parenting values; AND, it was quite clearly the result of a single parent who was trying their best to cope with my extremley challenging behaviors and who was possibly on the spectrum themselves and having an overload melt-down.
I’m not trying to whitewash anything, my parent is the one who pushed the intensity of the abuse-as-a-reason-for-being-weird concept. I just feel that PTSD is a very specific disorder with very specific symptoms that gets blamed for a lot of psychiatric and neurological dysfunctions and should therefore be taken researched and examined just as seriously as ASD, etc.
PTSD is definitely something that needs to be diagnosed carefully. It’s possible that ASD and PTSD could be co-occurring conditions–DSM-V dropped the unrealistic restriction that people with ASD can’t also be diagnosed with other psychiatric conditions. There’s also the frequent problem of misdiagnosis of ASD, especially in certain populations. So yes, caution is warranted and it’s important to take all of the factors in a person’s life into consideration.
I’ve also noticed that many people, including professionals, are much more friendly to the PTSD-is-the-reason mindset, rather than a neurological disorder. Interestingly, I guess since ADHD is so mainstream now, I’ve lately come across many people who are comfortable blaming ADHD on everything, too. When I tried to discuss Aspergers (now Autism) with my non-specialist psychiatrist, he smirked (I think he didnt realize he did that- but maybe I misinterpreted a benevolent smile, haha, pitfalls of Aspergers) and said I couldn’t have Aspergers because I care so much about others and can communicate so well (uh. No. Ask my husband and the few friends I have managed to retain- talking and communicating are not the same thing.)
He told me that ADHD can explain all of my symptoms. But I only see him a few times a year to update my medication and he’s never taken a full history of me nor ever asked me any ASD-specific questions… So how does he know? He sure was ready to prescribe a mood stabilizer, though, just in case I have bi-polar disorder, you know the kind: no manic symptoms other than insomnia and periodic depression when I get sad that I have no money or friends and my house is a mess… You, THAT kind. (That is sarcasm.) he didn’t even notice that I’m re-diabetic and the meds he wanted me to take cause high blood sugar and diabetes!
I’ve studied voraciously, taken the online tests repeatedly and also examined my life in painstaking detail- including interviewing friends, family and co-workers, so…
Yes, adult ASD is still something of a mystery to many professionals and I do think that adult ADHD and certainly PTSD are “ahead of the curve” when it comes to being accepted as more commonly occurring in adults. Hopefully in time the issues raised by adult ASD will be easier to find counseling for. My GP was quick to offer a mood stabilizer too and the psychologist who diagnosed me was adamant about my getting treatment for my anxiety as a way to help me be more social. He did acknowledge my concern that the anxiety was closely tied to my poor social skills, agreeing that “pills don’t equal skills” but kind of laughed off my question about how someone my age goes about learning/improving social skills. I guess those kinds of things are ‘chicken and egg’ problems. You see your depression as resulting from ASD-related executive function and other “life skills” issues while your psychiatrist sees it as something to be treated with medication (rather than addressing the root causes). It’s frustrating, especially when the professionals take a sort of “father/mother knows best” attitude.
He even hinted that a diagnosis wouldn’t help me anyway, cuz really, what could anybody do, it being in curable and all….
Ps, as far as the social stuff: based on my (coincidental- or maybe not so much) life choices, I strongly believe taking classes in theater arts, body language courses (as in lie detection), singing, relationship workshops, and others have told me debate, to be highly beneficial for developing social and communication skills.
It won’t help with the exhaustion or feeling as if one is “faking” it, but it will get you through job interviews, office get togethers and even five or six dates with someone new. Even when I don’t know what to say or do, I’ve learned how let people know that in such a way that its no big deal.
For those of you hesitant to “conform” or bend to someone else’s ideals, just look on it as learning a different language and culture- no possibility (or need) to change who you are, just a way to relate to the locals.
Yeah, the “what’s the point of getting a diagnosis at your age?” question is unfortunately pretty common. I’ve heard others say that theater training can be really helpful. I wish I’d had some exposure to those sorts of things when I was in my twenties. At this point, I’m feeling like the old dog who doesn’t want to learn any new tricks (but that could always change). 🙂
I love your analogy of learning social skills as a foreign culture/language.
Many of the pitfalls you describe in the medical/psych field are similar to what I’ve experienced. My Dr. has put me on 3 different psychotropics. While hesitant, I decided to try it. After all, he is a good Dr., & really takes the time to listen. I feel I’ve received some benefit from the meds (which is not to say that everyone should). I certainly don’t plan on being on them forever, either. While he didn’t say it outright, I’m certain he is convinced my diagnosis of ASD. I showed him my screening results, and I believe how he put it was, “sure looks like it”. While not an official diagnosis, it’s a big victory. At least I have someone in my corner. I recently had a pretty disappointing intake with mental health wherein the psychologist didn’t know the first thing about Aspies, & had no intention of finding out (see comments under diagnostic interview). So I’m, once again, on the search for a decent shrink. In regards to PTSD, I totally get what you are talking about. I had very good, albeit, somewhat emotionally distant parents, who did a great job of protecting me physically. They tried, but did not really understand how to protect me emotionally from the outside world. I knew I did not have PTSD, although some of the traits were clearly there. Simply because there never was any trauma. When you’re an Aspie, life is trauma. As you adapt, the perception of trauma abates. My Aspie Hubby does, however, have PTSD. There can certainly be a co-morbidity between the two. Anyway, I hope it helps to know others have had similar experiences. I know it helps me!
“…just a way to relate to the locals.” That’s beautiful. Makes me smile. 🙂
I think many factors come into relevance here. Myself, I am almost twenty two. I was professionally diagnosed with Asperger’s, as well as ADHD, NVLD and OCD at age seven. I also was non verbal til age four. For me it manifested as more severe autism in the years prior to diagnosis, and in the nineties, being diagnosed at seven was still pretty good. Asperger’s also didn’t become an official ASD diagnosis til 1994, so a lot of people with it would have been teenagers or adults already.
Yes, I was already well into adulthood when asperger’s became an official diagnosis so no chance of being diagnosed as a child.
I am struggling with this at the moment. I used to “joke” that I think I have Asperger’s after my eldest son was diagnosed with Autism. My youngest son was diagnosed in December aged 5, as everyone passed my anxiety about him off as my paranoia. Even my daughter fits an awful lot of aspergirl traits.
It all slammed home after reading “Raising Cubby” last month. And the more research I do for the boys, the more I am seeing it in myself. According to AMAZE there are no Psychs to get a diagnosis from within 200kms. So I am incredibly unsure what to do and if it’s worthwhile getting myself formally assessed.
It sounds like getting diagnosed isn’t practically feasible for you at this point. There’s nothing that says you have to be formally assessed. You can be undiagnosed and still be on the spectrum and identify as such. It’s really a question of what getting a formal diagnosis (if it were possible) would mean to you personally versus are you comfortable with doing your own research and drawing a conclusion on your own. It sounds like you’ve done a lot of research and are continuing to explore the possibility, which might be the only course of action open to you right now.
I guess what I’m saying is, self-diagnosis is a totally valid option when done correctly and I think all of the people I know who self-diagnosed and then went to get a formal assessment had their self-diagnosis validated by a professional. So not having access to someone who can diagnose doesn’t have to mean the end of your search for an answer. 🙂
Thank you =)
My daughter isn’t coping well so I contacted the local team here. They will organise an assessment for her and try their best to also get me assessed. We’re in a rural area but sometimes we are lucky enough to have experts travel out to us!
I was urged by a coworker (a manager actually) to take the original WIRED AQ test; it put me at 43 on the Baron-Cohen scale. I’ve taken many since, and I always score high on ASD (latest was the Ritvo Autism Asperger test, where I scored 166).
But I need a professional diagnosis. I had a meltdown at work in the summer of 2012, and have barely worked since, They chalked it up to depression and other health problems, but in the end I had to resign due to the fact that my job was only growing more and more difficult.
In fact, I’ve been hospitalized twice for depression and once for anxiety, both which I now know are huge red flags for some on the spectrum. This would have been diagnosed when I was 11, when a doctor told my mother that I had “tunneled” interests and that I learned things in a special way.
Now, at the age of 51, I am getting some answers. Finally I’m moving in the right direction.
You’re right about depression and anxiety frequently going along with ASD and it’s very common to find it more difficult to cope as we grow older. It’s good to hear that you’re moving in the right direction. I’m hope you’re able to get a diagnosis and the supports that can come with it soon.
Hello. I’m rather new to this, but I’m under the impression I might have Asperger’s Syndrome. Someone asked me if I was ever diagnosed with it, and my answer was obviously “no.” I seldom visit any health care professionals to begin with.
But the inquiry sparked my curiosity. I began reading about Asperger’s and it was chilling to see how accurate the symptoms were. I’ve taken a number of those “AQ” tests, and scored within range. But these tests can be inaccurate, and so I certainly didn’t take their results as fact. Asperger’s fits the bill, though, and I’m curious as to whether or not I have the disorder.
Truth be told, however, I’m scared to death of actually undergoing a diagnosis process. If I don’t have it, then I’ll no doubt be met with ridicule by others, and I’m back at square one without an explanation for these traits that’ve been present my entire life.
I’d like a second opinion, honestly. But I fear involving anyone close, as I’m sure it’d be quickly dismissed. I may asking the wrong people, but I feel someone here might have a similar experience of being stuck in “limbo.” What should I do?
The only thing that comes to mind is perhaps talking with the person who asked you if you’ve ever been diagnosed. You could approach it from a “I’m curious why said that” angle to gather some more information from them. Also, perhaps you could talk with a therapist or someone at your local adult autism support organization confidentially. That way if you’re wrong in your assumption, no one from your family or social circle would have to know about it and if the person you talk with feels it’s a good possible fit, you would have more confidence in following through with a diagnosis (as well as some support in the process). Either way, just learning more about Aspergers and how it might affect your life can be really helpful in not only devising coping strategies but in feeling like you’re not alone in what you’re experiencing.
If you read my post below, you’ll see that professionals aren’t necessarily helpful. This is all fairly new to the medical field, so it wouldn’t have been part of the training of many professionals. Even the so called expert in my town strikes me as a charlatan; he’s the go-to guy when someone needs an “expert”, but hearing how he is in practice I don’t consider him to be a professional.
Like the article says, reading the experiences of others can be really validating. Nearly every time I read someone else’s experience I think “OMG YES! I’m not a freak!” Then there is the world of advice on how to live with ASD that can start making the world make more sense. For so many years I got angry at the world because *everyone else* was crazy (why can’t people just do exactly the speed limit, for example, that drives me insane). However, understanding that I’m different, albeit with lots of other people in the world with the same differences, has led me to be far more accepting of other people. It’s also allowed me to learn ways that I can become easier to deal with for those around me.
I think the biggest thing is don’t fear the label. I’m a teacher, and over the last five years I’m becoming increasingly convinced that *everyone* has a label of some sort or another. We’re all crazy. We all have a disability. It’s all how you frame it in your own mind that matters. If you can own your label, and use it to become a stronger and better person through better understanding yourself, then it’s a strength, not a weakness. Many with ASD (especially the previously diagnosable Aspies, which is no longer a thing) are twice exceptional, meaning that they’re gifted in one area, but disabled in another. I like to think my gifts are worth my disabilities, so I see my autism as a blessing, not a curse.
Good luck 🙂
I’m self diagnosed. It came after I started working with ASD teenagers. It wasn’t so much that I noticed my traits in them, but that so many of the “tricks” one teaches to ASD kids to get by in the world (especially social stuff) were “aha!” moments for me. I started looking more in to it and realised that I’d been suppressing tics, which led to anxiety and self harm (like pulling off my fingernails to keep my hands still). I started talking about it to my partner who has a background in disability and she said it made a whole lot of things make sense. The same happened when she told her mum, and when I brought it up with my mum it made a whole lot of my childhood issues make sense.
So imagine my surprise when I went to a psychologist (I have anger and anxiety issues as well) when I mentioned I thought ASD was a strong possibility (I score really high in all the self-tests) he straight out said (ten minutes in to our initial consult) I couldn’t be because I’m too self aware and too good at communicating. I tried explaining that I’d rehearsed the conversation we were having over and over in my head for *years* before coming to see him, but that made no difference. I’ve also been referred to the “autism expert” in my city, but I’ve since heard from parents that he is willing to diagnose or not without actually ever meeting someone.
I feel that the psychiatric profession has a really poor grip on what’s going on inside my head. Self diagnosing has been a revelation (a rebirth like another commenter has mentioned). I understand my place in the world now and I have no problem telling people that I’m autistic , because whilst many of them don’t understand why I’m not rainman, it also explains a lot of my little quirks as part of my mental processing and that I’m not actually an insensitive jerk, and why I don’t respond well to sudden change but can be very accommodating if the time is taken to talk me through things. I’m quite mad at the DSM for getting rid of Aspergers, because it was a useful distinction I think. My partner works with some people with proper “disability” autism (non-verbal, self harmers, that stuff), and it’s not so much that I don’t want to be grouped in with them, but that I don’t want their disability diminished by my different ability. I love my autism, it’s who I am. It gives and it takes; I’m usually the smartest person in the room, but I’m also usually the one who has the least ability to communicate in the room. Social situations make me so anxious I want to vomit, but I’m very happy being alone and enjoy solitary pursuits.
What you describe is a really common experience–that instant recognition by yourself and people in your life followed by a quick dismissal by a professional who has outdated, stereotypical views of autism. I’m glad you’ve been able to read a place where you feel comfortable, in spite of that initial unfortunate incident.
With regard to the labels, I think you might enjoy reading the writing of Amy Sequenzia. She’s good at explaining why, as someone who is often labeled “low functioning” she wants everyone to be included under the bigger autism label. I learned a lot from her about why it’s okay to use autistic even though my diagnosis is Asperger’s. If you’re curious, Google “Amy Sequenzia Functioning Labels” and you’ll find a couple of short blog posts that might be helpful.
I know what you mean about that “gap” that exists when interacting with others. It was one of my biggest initial clues that I was very different from others and is definitely a huge give/take situation.
Hi, I’m in my early forties and although I have heard about Asperger’s for quite a number of years, I never associate myself with the condition. Not until a month ago. And not until my brother in law told me that he thought everyone in my family is socially awkward or inept. I laughed at him at the time, thinking that’s just how my family is (we are six siblings). I guess that’s why everyone in the family feels more or less normal. We know we’re not as social but hey, we’re happy inside our nuclear family. It’s a good thing that we scored quite high intellectually and are high functioning, otherwise people won’t be as forgiving.
Nevertheless I remember about a description about Aspies and went to read more. Did the AQ and Ritvo test and scored within the spectrum. Urged my siblings to do the same and two of them meet more or less the same score, other in borderline.
I’ve been reading more the past two weeks and rather amazed that I can recall the symptoms or the traits from my childhood, school days, and work places. All this time I thought I was just a rather cold, heartless jerk. Within the social norm, I know I look like it, although I never intended to.
Anyway, excuse my rambling, I’m just happy to find explanation for a lot of things. I don’t think I want to seek professional diagnosis considering it might change nothing and life goes on anyway. Thank you for all the information.
I’ve believed for over 10 years that I probably have Asperger’s, but since it’s only my opinion, I wouldn’t try to proclaim it to anyone. I’m just happy to have some insight into how I am and to make sense of myself.
I have no interest in seeking a professional diagnosis, because I’m not looking to convince anyone in particular, and also because I have no special needs to be met – my life is kind of ok the way it is. So, the only benefit would be the reassurance that comes with a professional’s opinion, and I’m fine without that for now.
I am at the start of the discovery part of this. I’ve thought on and off for years that I could have Asperger’s Syndrome. I’ve actually even told people – in my last job I told a relatively close colleague ‘I’m at least vaguely on the spectrum’ to excuse myself from networking events and large lunches (aka hell on a stick). I’ve been reading voraciously, and amongst other books have just finished yours. My lightbulb moment came reading an article by Sarah Hendrickx in the online magazine Standard Issue, which mentioned Special Interests. I was like, YES! Then when I got to the various bits about gender identity, eye contact and executive function I could have done a dance round the living room. At this point, I feel rather like I need to Proceed With Caution. I am planning on continuing to read, and continuing to write about how I am processing what I read as the various massive whammies of ‘yes that’s ME’ come in thick and fast. I’d just like to thank you hugely for this blog and for the book. I have never read anything by anyone which has resonated with me so fully. Also, the line about ‘your face going freelance’ made me laugh out loud. Actually laugh out loud, not just LOL. Thank you.
I am 37 and I just realized about a month ago that I may be ASD. I scored a 43 on that one quiz, and a 138/73 on the other, both indicating that I’m very likely ASD, but more importantly I see myself in the everything I read about Asperger women, and it’s the first time in my life I’ve felt that there is anyone else in the world really like me. (I have always been different than other girls and women, and have always loved to read but have never really related to the characters . . . )
I don’t want a professional diagnosis. I think I would like at some point to hear from a professional that it’s possible or likely that I have ASD (or that I definitely do not), but I don’t want any formal, defining label. I want it to remain a bit of a mystery. My identity is I am me, I am a woman, I am a person. I want to relate to ASD in order to understand and accept myself better, but not have to completely identify myself with it.
Well for me I self diagnosed since I was about 18. Went to see a doctor about professional diagnosis and was pretty much fobbed off with anti-depressants and “it won’t help you now”. After I lost a job because of what I believe is inherent ASD behaviour, I went back and insisted on seeing a specialist for a professional diagnosis. When I got this it provides me with some protection from discrimination, and also ended the constant struggle in my head of “did I just make all this up or am I actually ASD.” So I think a pro diagnosis can definitely help in some circumstances. Only downside really is I can now never join the military. I was considering a career as a military technician, but I have plenty of other options open. Not sure I’d fit in with military discipline lifestyle either.
I need to keep looking at self-diagnosis acceptance, because while I am confident I’m on the Spectrum, I worry that either people won’t take me seriously or that people will think I’m faking or over-exaggerating, or that I would offend people. But not only would getting a professional diagnosis be hard and expensive….I’m also terrified to try and get a diagnosis. Because if I’m confident in my self-assessment (that I’m still going through the process), and I go through the prof. diagnosis process, with tests that probably aren’t even designed for me (I’m a young adult “female” – born female, am Trans), and the results say that no, I’m not even on the Spectrum, it’d basically be devastating. Anyway. I’ve also got a cousin who has Asperger’s, and I wouldn’t be surprised if my Dad or brother has/had it, and it’s said to run in families, so. I don’t know. I’m just afraid to take the step to actually self-identifying as being on the Spectrum, as opposed to just highly likely being on it. Thoughts? Hope you are well. Also, thank you so so much for this blog. I’m so glad I found it. 🙂 – peace – ZJAL
the word autism spectrum and aspergers are relatively new to me. I’m a 31 male now, about 10 years ago my mom mentioned aspergers to me and i denied it hardcore. i didn’t want another label beyond ADD and Klinefelter’s Syndrome. i’d gone on with my life, and last month my best friend of 15 years suddenly says, “you may have aspergers because my brother has it, and you remind me of my brother.” thus begins my venture down the rabbit hole of the autism world.
at my mom’s suggestion of trying to get a diagnosis from a professional, i started where i could. i don’t have health insurance, but my work has a plan set up with local therapists for a set number of free sessions. my first goal was to try speaking with a therapist to see if i needed further testing for aspergers. after the first session, the therapist was certain that i didn’t have aspergers and that i just find a way to get back on my ADD medication. a whole lot of good that was, considering her credentials say nothing about autism or therapy in living with autism. after our 3rd session, she’s convinced i don’t have autism, because i communicate so well with her. that was my 2nd clue that she has no idea what she’s talking about. I’m great in a room talking to 1 person, and her only role is to listen to me talk about myself. thats the easiest thing for me to do in the world. me me me.
before seeking a first step of diagnosis, i was 100% convinced i am on the spectrum. after several weeks of research, reading through blogs, watching videos on the subject, listening to others who were also on the spectrum, etc., even talking with family who know me best. i know what i am. there is finally a word to describe what i’ve struggled with my whole life. now even my closest friends are trying to tell me that i don’t have autism, and to stop trying to lay claim to another label. i’m just confused more than ever. i don’t care anymore what my family or my friends think. i know me better than anyone, my memories and internal feelings and struggles are my own.
in the end, i will not be getting a professional diagnosis solely for the lack of health insurance. i am self diagnosed as having aspergers and i’m proud of who i am and the way God made me. you’re blog has been a huge inspiration for me. last month, i didn’t even know there were blogs like this. the very first article i read about you and your blog was on the definition of NT. thank you.
For several years ive thought my son has asperger… He now is 19, but i dont know if at this age, i should tell him, or just support him in his slightly different behaivor. Here you all have self diagnose, but i have diagnose my son, but of course im not a proffesional in this matter.
2 months ago I saught a diagnosis after thinking I would not be able to afford one. It was only $1,200 out of pocket. I’ve been diagnosed with autism spectrum disorder, level 1- formerly known as aspergers, and with generalized anxiety disorder, and rediagnised with ADHD. Interesting. The medications I’m taking now have nothing to do with those 3 things mostly because the doctor can’t prescribe downers when I’m on antidepressants (uppers). The medical world sure is strange.
I recently became fascinated with Greta Thunberg. I am also concerned about our warming planet and I began to identify with her attributes. She doesn’t consider asperger’s as a disability, but as her strength. I called my sister and told her I believe I have aspergers and she told me she has believed that for some time. I believe my mother has/had it as well. Now she has dementia. I just retired on an ‘old age’ pension at age 57. I have been reading a lot about it online and took a test which indicated I am probably on ‘the spectrum’. I am currently reading ‘Autism For Dummies’. I want to get a professional diagnosis, but plan to delay that till later next year for financial reasons. Meanwhile, I will continue to educate myself. This thread has some interesting stories. Thanks for your writings! I guess before I close I will say that I had a successful career and although I had some problems along the way, I was actually helped by traits such as my ‘out of the box’ thinking, as I was a senior analyst, for the final quarter of my career. Now I have a lot more time to mull over my life. Anyhow, thanks again!