Take-a-Test Tuesday has led to some readers realizing that they too might be on the autism spectrum. Their comments nudged me to start writing about a subject I’ve been meaning to tackle: 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.
As usual, I’m mixing personal narrative with a bit of advice based on what I learned from my experience. I hope that other Autistics and those who think they might be on the spectrum will add to what I have to say here by sharing their own experiences in the comments.
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So, you think you might be an aspie or autistic or somewhere on the autism spectrum. Now what?
First, take a deep breath. Relax. Nothing’s changed. You’re the same person you were before you took that test, read that article or had a lightbulb go off while talking to someone about autism.
I remember my first inklings that I might be an aspie. I was listening to an NPR story about David Finch, the author of The Journal of Best Practices. His first hint that he had Asperger’s was an online quiz that his wife asked him to take because she recognized so many aspie traits in him.
As they described the quiz questions, for the first time I realized that Asperger’s Syndrome is more than social awkwardness and that I’m more than painfully shy. The symptoms that stood out most for me were the ones I’d never known were “symptoms” of anything other than my personality: attachment to routine, resistance to change, special interests, a need to be alone. Down the list I went, nodding and thinking yes, yes, yes, ohmygoshyes.
I went in search of the Aspie Quiz and what really blew me away were the specific behavioral questions: Have you been accused of staring? Yes! Do you tend to talk too loudly or too softly? Yes! Do you have difficulty filtering out background noise? Yes!
How had I not seen this before?
I’d heard a similar interview with Finch back in 2009. Interesting, I’d thought at the time, but nothing more. I’d read quite a bit about autism, because I was drawn to the subject. It never occurred to me to ask why. I’d taken the Autism Spectrum Quotient AQ test several times in the past. Every single time I scored above the cutoff for being on the spectrum. Every single time I told myself that it was probably a fluke, or even more improbably, that most people likely scored that high.
For years I’d tiptoed around the subject of autism. Finally, at 42, I was ready to explore the possibility that I was autistic.
Processing your First Contact with Asperger’s or Autism
- Nothing has changed; everything has changed.
- Know that no matter how it feels right now, this can be a positive realization.
- If you’re on the spectrum, learning more about what that means can help you understand yourself better and learn to cope more effectively with the challenges that an Autism Spectrum Disorder (ASD) presents.
Next Part in the Series: Paths to Realization and Is this Me?
Musings of an Aspie 
It had been speculated that my daughter might be autistic when she was very young, but she didn’t have enough symptoms to qualify her for a diagnosis. At that time there wasn’t very much information avaliable about girls and autism. Years later, at nearly nine years old, my daughter was diagnosed with bipolar. At that same time her younger brother was having trouble at school. We thought he was reacting to his sister’s behavior. We got him into counseling and it wasn’t long that the counselor realized that there was more to this than we thought. She started talking about his lack of eye contact and the isolation that he felt because he thought so much differently than his peers. He was only seven years old at the time. She encouraged us to get him evaluated for Aspergers and sure enough there wasn’t a dought in the psychologist’s mind that my son had Aspergers.
It had been several years since I had research information about Autism Spectrum Disorders. By this time there was new information regarding girls. I learned that the 1-4 boys diagnosed with ASD was not correct. There were just as many girls with ASD as boys. It is just that girls display the symptoms differently and were more likely to get over looked. I read the information about the symptoms that girls experience and immediately thought that they were talking about me. It occured to me that the only reason I didn’t notice anything amiss with my son is that he acts like me. I thought that was “normal” behavior. I discussed my suspicions with my son’s psychologist. She told me that she had thought all along that I had Aspergers, but didn’t say anything, because she wanted to focus on the kids. I was not officially diagnosed at this time.
My daughter was not responding well to treatment and I kept thinking that we were missing something. I got her fully evaulated and it was determined that not only did she have bipolar, but PDD-NOS, ODD, and dsygraphia. This meant that both my children were on the autism spectrum.
It would be a year after my son’s diagnosis before I went to the psychologist and asked for an official diagnosis. I teach and I was really overloaded at school. I could no longer hide my symptoms and I was terrified that someone was going to misunderstand my behavior and I would end up losing my job. As an adult, my evaluation was different than the kids and I ended up showing that I could still function, but was highly impacted. I was 36 years old when I recieved my diagnosis.
My diagnosis was a relief to me. I finally understood the “whys” of my behavior and I learned what I needed to do to make myself feel better. My son was also relieved by his diagnosis. We know that there is nothing wrong with us, it is just that our brains are just wired differently.
Thank you so much for sharing your story. It illustrates so much of what I’ve written about in reference to girls and women having difficulty getting diagnosed or recognized as aspies/autistic. My diagnosis was a huge relief too. It explained so much.
It’s interesting that you mention not noticing your son’s “not normal” behavior. My daughter is NT but has many aspie traits, which I think she picked up from modeling my behavior or just not being corrected on at home (though my husband is also NT, he was absent due to work quite a bit during her first decade).
I’m 60 and have just been diagnosed as ASD, strictly for my own FYI, haven’t told many family, friends or acquaintances. it truly changes everything … and nothing. I’m so relieved that there is a reason I’ve never been able to sustain a full-time job for more than a few years — why I have so often felt overwhelmed and overloaded by what seems ordinary to so many people. There’s a reason I’ve so often been called “too sensitive” but there isn’t necessarily something wrong with me — I am outnumbered, but I don’t feel as deficient or guilty as I did.
I’m so happy to hear that you found your explanation. It likes everything falls into place once we understand the mysterious “why’s” of our lives. And I’m going to take your story as proof that’s truly never too late to benefit from the discovery/diagnostic process. 🙂
My son was diagnosed with autism a while back, and we attended a class for parents of autistic kids. They showed us a PowerPoint listing signs of autism, and as we went down the list I kept finding things that applied to me. When we got out of there, I said to my wife You know, I think I might have some of the signs of autism. Her reply: a knowing Uh HUH.
I don’t find this scary or traumatic though. I’ve always had great difficulty with small talk and with reading people, little niggling things bug me to death that don’t bother other people, and a whole host of little things like that. Personally I find it comforting to know that my troubles are due to a condition–that I’ve been working against a handicap and it’s not just a constant failing on my part.
I just began my third year of college, but my first living away from home. I have noticed signs of autism in myself before but they never seemed to mean anything. I had brought it up to friends and they had rationed my fears away by telling me I was a gifted student I could not be on the spectrum. I have had doctors tell me I have social anxiety , depression, other anxiety disorders, etc., a new diagnoses every visit, but not one had ever mentioned the possibility of the spectrum so I dismissed the idea. Since making this transition into living on campus at a new college I have found that I am much more different than I believed. People on a daily basis tell me I am wearing something inside out or my sock is backwards and when I tell them it feels better that way I get strange looks, I thought everyone did that. Multiple conversations going on at once, they drive me to a point I have to cover my ears or leave. Noises no one else pays attention to drive me to tears, air conditioning units , the twirling of fans, certain shoes on the floor. The way I hold my pen or cut my food in the dining hall and everyone asks if I ever learned to do those skills properly. I have been in a course studying exceptionalities in students, as I am looking to become a teacher. Upon learning about autism more in depth I decided to take the AQ test and a few others so I could prove to myself once and for all I did not have this disorder, I was just a ” normal” person with some unique traits. Each test I took, multiple times over, I had a score that was substantially over the average neurotypical score. I want to talk to someone and find out one way or the other, as internet tests I suppose can be flukes, but I am scared if I go in with a bunch of scores off tests on the internet I am going to get laughed at. I just want to finally know why I am so different from everyone else and the more I look into Autism the more I realize that is me almost exactly. I do not know what to do. If I get officially diagnosed it will not make a difference, as this article says you are still the same person, but something inside me needs to know one way or the other, it is keeping me awake at night. Thank you for this article it has been quite encouraging and allowed me to know I am not alone being an adult who believes they may have been looked over.
I’m still trying for a diagnosis, but I’m not sure I’ll ever get one. In honesty, I’m not even sure if I have it… but so many things fit. However, while some things fit perfectly… others don’t.
It’s very confusing for me.
I think that’s true of everyone – having some things fit and others not. When I read about the experiences of other autistics, some things feel like they’ve read my mind and others I can’t relate to at all. Seeking a diagnosis is a really personal decision and one that will always be there for you so don’t feel like you need to rush it. 🙂
True, I suppose. 🙂
Went to the doctor the other day to get a referral in order to qualify for a rebate for seeing a psychologist, as per the procedure here in Australia. Doc said he has to ‘rule out’ all the medical possibilities before giving me a referral letter, he started by asking lots of questions and concluded the symptoms I am displaying are pointing towards Thyroid and Cholesterol (???), he ordered a blood test and I have to go back to see him when the result comes out.
After a 30 mins questions & answering, took my blood pressure, listened to my heart beat, etc, I thought all was fair enough until he added something like, “You are not autistic… Asperger’s is another thing all together, it is complicated and only a psychiatrist can diagnose, not a psychologist..” !!!
I had to resist all urge to tell him Asperger’s is part of the ASD umbrella, that I probably know more about ASD than he does, he should just stick to doing what he knows best – let the experts to decide if I am on the spectrum, as well as the psychologist I have in mind to see has worked with Tony Attwood (I think I probably will have to point out who Tony Attwood is).
Seeking help to manage my meltdowns, stress, anxiety, depression and insomnia more than seeking a diagnosis, for these issues are affecting my marriage. But trying to get a referral from a doc seem to be a big obstacle, especially a smarty pant doc..
Note: a psych session will cost AUD240/hour, with the rebate I can claim at least AUD120. Diagnosis cost AUD660 which adults cannot claim rebate for.
Thank you for sharing your experience. It’s sounds very frustrating. For some reason, my GYN sent me for a thyroid test too, even though I swore I didn’t have 2/3 of the symptoms she listed. My primary care doc was similarly unhelpful (which I’ve written about in a part of this series to be posted in the future). It’s discouraging that we have to be the ones to educate some of the medical community, though I guess they can’t know everything.
I think seeking help in managing the symptoms that affect your quality of life is so important, whether it results in a diagnosis or not. Bravo for taking that step and being willing to fight for the referral that your doc seems so reluctant to give. AS can make life hard – getting diagnosed was a big first step for me toward getting more support and helping the people in my life understand more about my behavior/needs/challenges.
Please keep me updated on your progress in the comments to this series? I think it’s helpful for readers to see the ups and downs of the process in real time the way you’ve described it here.
Thanks for your kind words!
Blood test came back all OK for the medical conditions doc wanted test for, the big test will be this Friday when I am seeing him again, hopefully he agrees to give me the psych referral.
I’m interested to know the period before your diagnosis, what went through your mind? As in the “what-ifs” – what if the diagnosis come out as something else? Can/did you talk to anyone about your suspicion (that you are an Aspie) during your discovery period? If so, what was the reactions of non-family? Have you met any Aspie during your discovery period?
For me, right now the answers seem to be pointing towards ASD, however there is a possibility I am not on the spectrum, then I will be at a loss again.. I wonder if you have also gone through that path (the “what-ifs”) or you were fairly confident when seeking your diagnosis?
Looking forward to reading more of your story 🙂
Fingers crossed for you that you get the referral on Friday.
Much of what you asked about the discovery process I’ve included in the next couple of posts in this series. But to sum it up, one of the reasons I initially put off seeking a diagnosis was my fear that the doc would officially declare that I didn’t have ASD and then what would I do? Even on the day I went for my follow-up at which I received the diagnosis, I had a seriously upset stomach because I was nervous about what the outcome would be. On the one hand, I was felt certain that AS explained so much and on the other I was terrified that I’d just imagined it all and would be summarily told so.
It wasn’t until I started blogging that I discovered other aspies/autistics and got a chance to read their personal experiences. Before that I was devouring books on AS and leaping at any crumb I could find about adults like me because so much of the literature is about children.
I’m going to be posting at least one part of the series each week – hopefully that’s not too slow for you!
Like you, I’d always scored above the cutoff on the Autism Spectrum Quitient, but hadn’t thought anything about it. Until I started reading up on Aspergers in relation to my late father, who had been diagnosed with multiple different disorders, none of which ever seemed quite right. I began to see that not only did he probably have Aspergers, but that perhaps I did as well. To clarify, I have not sought diagnosis, and I do not tell people I have it. While I am positive that I have many traits and that it definitely effects my life continuously, I’m not sure that it would be considered severe enough for a diagnosis – even though I’d like to have one. For me, just reframing my life to include ASD traits has been transformative. Aspects of myself I have never understood but had to accept, I now know the why and can work with that in mind. My relationships with my husband and children have vastly improved. Everything is better, even without a dx. Being able to deal with life with the right set of tools is invaluable.
“Being able to deal with life with the right set of tools is invaluable.”
Yes! In a later part of this series, I’m writing about Asperger’s and the self-discovery process as a sense-making narrative, which seems to be how you’re describing your own process. I think that sense-making aspect of learning about AS is far more important than a piece of paper with a diagnosis on it.
Also, it may be that you don’t feel like you meet the clinical threshold for a diagnosis as an adult because you’ve developed a lot of adaptive mechanisms, perhaps? Part of my diagnosis was a developmental history and a great deal of talking about my childhood traits. Fortunately, the psychologist I saw has some good background knowledge about the differences between ASD in adults and children and in men and women.
“The right set of tools” is exactly what I’d like to help my 18yo daughter find! I’ve taken a few quizzes as best I can (as if I’m her). It does really seem that she’s on the spectrum. As a female with an INTP personality type, she’s a rare jewel as it is, but I’m sure there’s more to her quirks than that. She’s been emotionally handicapped since day one. I just don’t know how to broach the subject with her or how to point her to some information that might help. She’s fiercely private. 🙂
Oh, a definite yes on the adaptive mechanisms, as well as forming an entire life for myself that doesn’t freak me out as long as it stays the way I made it 🙂 I’d like a diagnosis for many reasons, the most important being that I feel it would help officially explain me if I needed it and if I wanted help I would like to be assured of getting it for what I actually need and who I really am. Being autistic with OCD is different from just having OCD. So I haven’t thrown out the idea of pursuing diagnosis, just working it around in my head along with cost, insurance repercussions, etc. But I really love coming here and being able to talk openly without feeling like I have to hide who I am, so I’m grateful for people who are accepting of non-neurotypical but not dx’d people!
I’m glad you’ve found this to be a safe place to explore ideas about ASS, etc. I completely understand how nonlinear the journey can be. I’ve thought often that I might be mildly-moderately OCD but have never been diagnosed. I’ve read that there’s a high correlation between ASD and OCD though.
Certainly diagnosis can have consequences that need to be seriously thought through. I found that getting professionally diagnosed helped me move forward in a way that I was having trouble doing without that “peace of mind.” But it’s such a personal decision and one that doesn’t need to be rushed into by any means.
Another excellent post, and an inspirational prompt to write about my own experiences it seems! You may be my ‘non-fiction muse’! 😉
I had an extremely extended journey from first thinking about the autistic spectrum to accepting my place on it. (As always, I didn’t realise quite how extended until I wrote it all out as a comment!)
I’ve been aware that I was fundamentally different and somehow detached from the people around me since I was 12 and much of my life has been obsessively trying to understand myself and find an identity that truly fit and answered all my questions. I’m also transgender and not heterosexual and didn’t understand those immediately either, not really settling into them until I was in my early to mid-20s, which I’m sure was in quite some part due to the complications of not understanding my autistic traits. I won’t go through all the things I’ve identified as in my life and how that complicated things, but suffice to say, my life has been interesting.
I’ve always been drawn to others who were outsiders in society, including various disability communities. As such I’d read Autistic rights articles online in the late 1990s when I was in my late teens, most notably Jim Sinclair’s ‘Don’t Mourn For Us’.
Late 90s Autistic writing was very much from the perspective of people who were non-verbal, at least in childhood and so I didn’t see myself in most of it, while relating to some other parts.
Like most people in geekier corners of the Internet, in 2001 I took the Wired magazine ‘The Geek Syndrome’ version of the AQ test and noted that I came above the threshold if I answered what I was like when I was at school, but just below if answered what I was like in the present. I thought that the whole thing and how it was presented was kind of flawed and pathologising geeks and so, as I was much less self-aware and had a different answer for what explained the way I was back then, I just dismissed it outright.
Then in 2003 I saw a BBC documentary ‘My Family And Autism’ which was presented by a 14-year-old with Asperger’s, Luke Jackson, talking about what it was like to be a teenager growing up on the spectrum. I related to this incredibly strongly, it seemed uncannily like my teenage years. I was taken by it enough that I bought the book “Freaks, Geeks and Asperger’s Syndrome” that Luke had written and read it cover to cover.
However the documentary and Luke’s writing presented Asperger’s in a very specific way. It did actually talk about the Autistic Spectrum, as it featured his classically autistic little brother, but it didn’t make the huge variation possible under the Asperger’s label clear. It also said that certain things, like seeing fluorescent lighting as flickery, were common to everyone on the spectrum. As such I initially reacted extremely strongly that it was so very me but eventually used the book as evidence that I couldn’t possibly have Asperger’s because not everything he said fit me perfectly. I was also still pretty oblivious to the majority of my traits and so instead I sort of saw myself as being ‘culturally similar’ to people with Asperger’s, but assumed I was an outsider for different reasons.
Ironically, I think it takes a lot of flexible thinking to see yourself in books about one person’s experience of Asperger’s or adult autism, because there’s actually a huge amount of variation in the way that the traits manifest and interact with our individual personalities. The first instinct is to take everything very literally and discount the possibility of being on the spectrum unless everything is perfectly correct and matches your experiences exactly, unless the materials are written *very* carefully.
Eventually, in about 2006 a friend was diagnosed with dyspraxia, and I was surprised to find so many of my traits and difficulties on the symptoms list for that, not just clumsiness but sensory difficulties, muscle weakness, self-organisation difficulties, concentration differences, proneness to fatigue and problems with nonverbal communication. I concluded that I was almost certainly dyspraxic and joined a mailing list and asked lots of questions about all sorts of life experiences, almost all of which seemed to fit, even if they weren’t clumsiness-related.
Around the same time someone I knew socially told me that I had Asperger’s, didn’t care whether I agreed or not, they were going to treat me as if I was and then we’d get along. Meanwhile it came up over and over on the dyspraxia mailing list that almost everyone with Asperger’s also qualified for a dyspraxia diagnosis (although not vice versa).
As it’s incredibly important to me to have an accurate model/theory of myself and how I function, I took all the screening tests for Asperger’s that I could find around at that time, and came out kind of borderline in most of them, again scoring higher if I answered for what I was like in my middle teens. I read articles about what the personalities of people with Asperger’s were supposed to be like and didn’t really see my adult self reflected in them. I stuck with dyspraxia as my answer.
In 2007 I’d been promoted into a team leadership/management role at work and was having a variety of problems as a result of people not feeling able to correct or challenge me anymore. I was on the verge of losing my promotion (and maybe my job) so I paid to get a dyspraxia assessment, resulting in diagnosis. This meant that I had something to disclose to explain myself and show how hard I was working on social stuff, rather than people perceiving me as careless and difficult.
After that, I got involved with the neurodiversity movement and went to conferences in London where I talked a lot about my experiences of having dyspraxia. During which people would tell me that I talked so well about what it was like to have Asperger’s, and I had to tell them I didn’t think I had it. I was even asked to be interviewed for a documentary about Asperger’s!
I also identified a friend who definitely had the same thing I did, which I explained was dyspraxia, but which they were soon after convinced was Asperger’s Syndrome. I was very invested in dyspraxia covering all my traits and used all the arguments I’d used to convince myself on this friend, without success. I had even taken the Aspie Quiz when it told them they had Asperger’s, and got a higher score than they had – and used this as proof that dyspraxia covered everything! When they eventually got diagnosed with Asperger’s I was sent into something of a personal crisis and did huge amounts of research.
During this I was told about Nonverbal Learning Disability and how in the US it’s what the UK idea of dyspraxia with social issues is diagnosed as. Looking it up, I discovered that it was considered at the time to be a ‘pervasive developmental disorder’ kind of on the wider Autistic Spectrum with most of the traits but not considered to be a type of autism. I also found that the cognitive profile I’d got from my dyspraxia assessment would automatically get me a NVLD diagnosis.
So I let NVLD explain everything for a few more years while gradually becoming aware of some other things I had difficulties with, especially emotional awareness and innate self understanding. I also got stuck in some situations that made my sensory difficulties and tendencies for rigid thinking seem much more obvious and pronounced. Finally while having a particularly stressful time where my traits were proving very difficult to handle, I read various things about how NVLD wasn’t going to be accepted into the DSM-5 and was considered by various specialists to just be a pattern of difficulties that highly verbal people with Asperger’s have.
So in late 2011 I went back into a period of research, set adrift without a working model to explain why I was the way I was and how I function. This time around there was far more about atypical adult autism, hidden Asperger’s, Aspergirls and there being a diversity of different ways for the traits to manifest and for coping mechanisms, personalities and lives to differ. I didn’t have any trouble seeing myself in these narratives, in fact the more I read the more uncannily I saw different aspects of my life reflected in the experiences of other people.
And then having read so much about the DSM-5 decision and Asperger’s being rolled into the Autism diagnosis, I found out about how stimming wasn’t just rocking and flapping but so many other sensory seeking behaviours, and suddenly explained a huge portion of the odd things I did. So much so that it was like the final piece in a puzzle that explained everything I did and as soon as I read it, I realised that I was autistic.
Once I’d ‘self diagnosed’ as having an Autistic Spectrum Condition, I found myself getting into cycles of recognising traits in stressful situations then obsessing about if I was right and the doubt making the stress and the traits worse. It was clear that I had to go get assessed by someone qualified and impartial, if only to stop the obsessive self-questioning.
Luckily several of my local friends have Asperger’s diagnoses and were under the care of the local NHS Asperger’s Service, so I was able to be certain that there was somewhere to get referred to and that they were really good people who I could trust to assess me properly and help me appropriately if/when I was diagnosed. So I went to my GP and got referred and less than 5 full months later I had a diagnosis.
I’ve had a few months of adjusting to actually understanding my life and my self and not regularly going into periods of obsessively questioning my ‘working model’ or theory of how I work. I’ve been looking back on a lot of things I did in my life without that knowledge and wondering how they’d be different. Now I find myself wanting to write publicly about my somewhat atypical experiences of being on the Autistic Spectrum so hopefully other people like me don’t have to take more than a decade from first considering the spectrum to understanding and accepting their place on it.
(And I really need to make a blog because that comment is easily blog post length yet again).
I’m so glad you took the time to go into detail because even though I’ve written close to 8000 words (and counting) for the posts that will make up this series, my self-discovery narrative doesn’t have the clearly defined steps that yours does. I stumbled around in the dark a lot and then was basically struck by lightning one day, which is only one way of getting from point A to point B, obviously. Your exploration and eventual discarding of other possible diagnoses illustrates how challenging it can be to find the right answer and yet how well that answer fits when you finally do.
Also, you bring in a lot of complex issues that are raised by possible alternative explanations for part or all of your self-identity. The self-discovery process is complicated and nonlinear and by no means as easy as taking a screening quiz and being done with it. I guess in a way we all self-diagnose before seeking (if we do) an official diagnosis.
I am not autistic but the parent of an autistic son. I can still so vividly recall, like it was yesterday, when I first read Tony Attwood’s book shortly after my son was diagnosed. All the while I had the same ohmygodyes moments you described. I remember thinking, “This man has been living in my house and I didn’t even know it.” I felt relief. I felt like I wasn’t crazy. I felt like I wasn’t a bad mother after all. I felt hopeful. That was 17 years ago and I can STILL feel all of that. Yes, it is so good to know, so good to understand. I am so very, very grateful I got to understand.
Yes. All of this, exactly.
I’d read a bit online before I got my hands on Attwood’s book, but much of what I found online was geared toward children and I had trouble relating to it (adult autistic bloggers were still unknown to me). I was so excited to read about adults like me and to know that I wasn’t alone. Learning that my tribe was out there somewhere opened up all kinds of possibilities. I feel like through blogging, I’ve actually gotten to meet my tribe and that makes me happy every single day.
I actually wrote a 2-part series on this on my blog. I have a LOT to say on the subject, and my “diagnosis story” is rather different than most. So rather than leave it here in prose, I’m leaving links…
My Diagnosis Story, Part 1: Childhood
and
My Diagnosis Story, Part 2: Diagnosis and Understanding
(Note to Musings, if the pretty links don’t work, and I’ve messed up my HTML, please feel free to edit the comment so that the links are available/clickable)
Thank you for linking to your posts here, E. I read your diagnosis story when I first discovered your blog and I’m glad others will be able to find it from here now too. I relate to so much of what you wrote about your early childhood. It was hard to read in parts and also really validating for me personally, so I appreciate the time and effort you took to share it in such detail on your blog.
Read this this afternoon at lunch, and had to grin, because my own version of this post was what I was typing up. You can find it here: http://tagaught.net/2013/01/17/aspergers-diagnosis-official-and-non/
😉 tagAught
Thank you for linking to your diagnosis story (and your blog, which I’ve subscribed to). You’ve had a long and twisting road to getting diagnosed, for sure.
I’m going to point out here that you’re in Canada and your post is a good illustration of how the Canadian health system works for Canadian readers who are considering seeking a diagnosis.
The only thing is that… “Canadian Health System” is a bit of a misnomer. The Federal government might provide money and general direction, but it’s the provincial governments who control the health care systems (at least, for most cases – it can get complicated sometimes).
So… Ontario, and Newfounddland and Labrador, more like. But yeah. And at the very least, the details on the DTC and RDSP are good reasons *for* getting a diagnosis.
😉 tagAught
(And thanks for following my blog!)
Okay, thanks for clarifying. I’m completely ignorant of the health care workings north of the border and shall send people your way if they have questions. 🙂
Corrected URL: http://tagaught.net/aspergers-diagnosis-official-and-non/
I am also in Toronto Canada. After my son was diagnosed at 3 1/2 with PDD-NOS . I have been convinced my husband has Aspergers, so I have been reading Tony Attwood’s book. I’m getting mixed feelings, I think it’s me on the spectrum ( It would explain ALOT my teenaged years, my 20s, my 30s …. ) I am 43 and have been searching my life why am I this way? Odd, Over sensitive, can’t show much empathy to someone in need…. Depression, Anxiety, Obsessive…. The list goes on and on. I have taken three Aspie tests. AQ test 37 and 39. Asie-Quiz 138 the first time then 120 the second time. RAADS-R 113 . They all point towards ASD. I would feel great relief with a diagnosis . I had a diagnoses of Social Phobia & Anxiety Disorder in my 20s. My meltdowns tend to be crying or screaming then crying. I over think everything and analyze what my friends might be thinking. In my head they don’t really like me, just put up with me. I mentioned to my mother I think I may have Aspergers . She said ” no way , you were a normal kid, not like my son” . I had an eating disorder in high school. I was obsessed with being skinny; since I wasn’t tall I had to do something I could control. I think I need to look into it.
Maybe your mom isn’t the best expert on AS? 😀
It does sound like many of the things you mention fit with Asperger’s as an explanation. Also, girls with AS tend to look different from boys with AS, so you can’t really use your son or brother as a guide. Attwood’s book touches a lot on this, so you probably already knew that.
In addition to AS, I have a diagnosis of social anxiety disorder and the psychologist who diagnosed me said they often go together. I’m glad you’re reading and exploring the possibility of why you are the way you are. I hope you’ll keep me updated on your progress.
I knew something was wrong and things weren’t going well, but autism was never on the radar until the diagnosis itself. Afterwards, I remembered people had described me as such on occassion.
It’s interesting that you were taken by surprise by your diagnosis. I had never had anyone mention it specifically to me, but I was always drawn to online quizzes and stuff for what I thought at the time was “mysterious” reasons.
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Hi.
I still haven’t had a professional diagnosis, but I’ve taken two online tests, read some blogs, and listened to a couple of podcasts related to Asperger.
My initial reaction is relief. I always thought I was a strange, special case. But just realizing there are other people with problems similar to mine and reading about their experiences – some of which are very close to mine – is somehow a relief.
And it explains a lot of things. Why I’m obsessed with knowing everything about certain topics, Why I’m like a beaver, gathering information of a given subject. Why I’m very bad at social interaction. My lack of eye contact. And lot of other stuff…
Thanks for sharing your experience through this blog.
Thank you for letting me know it’s been helpful to you. Discovering that we’re not alone is a huge comfort and relief. There’s a big online autistic community and it’s very welcoming for the most part. Good luck with your journey of self-discovery!
I’m 47 and just dipping my toe into this after a long and stressful eternal struggle with everything. Exhausted and at risk of losing wife and kids if I don’t do anything and with work as insecure as ever but demanding too, even they are pushing practical psychology onto the staff. My emotional intelligence test they set paints me as a psychopath. They’re trying to improve leadership skills.
But a reunion with a lost mate recently, another one from over the decades, ended with my final statement of the self destructive selfish defiance to let anyone in. He hasn’t been back in touch. But I’ve still got things to tell him.
The autism tests I’ve taken AQ and everything I’ve read makes more sense now. I know I’ve masked so much. Suvived. Succeeded sometimes. But I’ve also failed and failed again. And let people down. And let myself down severely. And there are things I won’t be able to do without a lot of help, so recognising autism at play, allows me.
It provides a context to seek help. Gives me a framework to unravel around and unlayer the chaos and criminality that I’ve been shadowed by all my life since adolescence and before. A diagnosis can come in time. I will move forward with clarity about who I am and what I can do to live in harmony with others.
And maybe I can help them live in harmony with me
Is it possible to have a false positive on the AQ test? Usually I get scores in the 18-23 range, but I still suspect I might have it. I mean, a lot of people have told me they think I have it and people at work treat me as such, and it’s really confusing and I just wish I had a definitive answer either way.
Yes, definitely. It’s possible that the questions just don’t fit the way your particular brand of ASD manifests or you may not realize that certain things apply to you. For example, I was certain that I don’t stim because I didn’t realize all of the forms that stimming can take. Also, the AQ is heavily biased toward a very specific set of autistic/aspie traits and if yours are slightly different, you could get a lower score. In the original study that the AQ is based on, there were people who were professionally diagnosed and who also scored as low as you do or lower.
You might want to take a look at this article to see how much of it applies to you: http://autismwomensnetwork.org/article/understanding-gender-gap-autistic-women-and-girls
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Hi,
I just wanted to say thank you for writing about your experiences. I haven’t had a chance to go through all of your posts yet, but I’m sure I’ll get to it eventually.
I took the Aspie quiz before I saw this post on your blog. I scored about 107/200 and 101/200. It told me that I have both traits for Aspie and NT. I thought to myself that maybe I was just hoping for someone to tell me that I’m an Aspie so that I would have an “excuse” for the way that I am. I’ve noticed in my personal relationships, particularly, that I have trouble understanding why someone is upset for something I did or did not do. I also don’t express my affection in ways that other people understand. This tends to cause people to think that I just don’t care about how they feel, etc. I even had an ex tell me that she thought I had Asperger’s, but when I shared this with a couple of close friends that pretty much told me that there was no way that I could have because they had close family members who had Asperger’s, and I wasn’t like them. So, I brushed it off for a few years and continued on with my life.
But, now I’ve come back to it. I retook the test after reading a lot of the comments here on your blog, especially this post. I realized that I’ve adjusted my behavior a lot to what is “socially appropriate.” I tried to answer the quiz questions as if I don’t make those adjustments. I don’t know if this is the correct thing to do. But, I ended up with 144/200 for Aspie and 70/200 for NT. I don’t know if my research has skewed my score. One way or the other though, it doesn’t matter what a test says. I will still be who I am. I just wish I could offer a better explanation to people than to just say that’s how I am and how I’ve always been. I feel like people are much more willing to accept you if they have a reason to think that you’re not just being difficult or hard to deal with.
Anyway, my past experience with even bringing up the subject with other people in my life has made me reluctant to bring it up with anyone who knows me personally. I think that’s probably why I’m writing here. I just thought it would be easier to get my feelings out.
Again, thank you for writing this blog! Sorry for such a long comment.
I’m glad you’re finding the post helpful. What you say about your aspie quiz score changing after doing some research makes a lot of sense. When I first learned about Asperger’s, there were quite a few things that I didn’t think applied to me because I either didn’t realize that I was doing them or I had learned to minimize or suppress them. So it’s quite likely that through your research you are better able to identify some traits that you may be didn’t realize you had before.
It’s great that you are able to share here and maybe feel a little better. I know how hard it is when you can’t share news like this with the people in your life because you’re afraid of a negative reaction.
So here’s a couple of questions related to things we did in childhood or as toddlers or infants. I see my doctor on Monday to start the actual diagnostic process for ASD. I was able to talk to my mother today for a bit with my sister’s help. She is in her later 70’s and her memory is not what it used to be. I asked her a bunch of questions and she told me things that I did not know till now. It turns out that I was a rocker. She told me that I rocked on my hands in knees so hard that I would move the crib around the room. She also told me that she was not able to potty train me until I two years old, and that I did not walk until I was a year and a half (18 months). She also confirmed that I was a wanderer. She also told me that I did not sleep much at night and while everyone else was asleep I would be up at night getting into things. She cited an example where she got up one morning and there was white sugar, brown sugar, and peanut butter all over the kitchen floor. That was one example of my being up late into the wee hours of the morning and nothing that she did kept me in bed at night. More information for me to take with me on Monday.
Does anyone else have similar stories? Does delayed walking, potty training, insomnia and wandering all fit the Aspie trait list?
When I asked her she said that many of the traits that she and I talked about were also present in her and in her own siblings, as well as my brothers and sisters. Lends more credence to genetics and ASD.
I suspect this is too late for your appointment, but all of those are very typical of kids on the spectrum. I hope your appointment went well! Please let me know what it was like if you see this.
As noted elsewhere in the last couple of days, diagnosis confirmed! I am a part of the Aspie family. 🙂 Thanks for answering that question!
🙂
After 20+ years of medication for schizo and bipolar (I am now 41 and learning how to live again), I finally had the Serotonin Syndrome and nearly died. I had to cut myself off from any substances or foods that altered my body’s serotonin levels for months. In that time, my mom (who I suspect is ASD) suggested that maybe I look into autism as an answer. I refused to see the doctors because they poo-pooed me when I asked if that was possible and started researching on my own. For 8 months last fall and winter, I took tests and scored very high on the Aspie side and very low on the NT side, I researched all the lists and traits and then the memories came flooding back to my once zombified mind, and all of a sudden it made sense.
I had previous doctors at a local mental health facility that I liked and in June I called and asked specifically for a therapist and doctor that could take me seriously when it came to possibly changing or reviewing my diagnosis. Guess what? I was right. I had to do the work myself, but they fully agreed. Especially once they saw the notebooks of lists of prior medications (dozens) and tests and traits I had accumulated over the several months of isolation. They tried to put me back on serotonin altering medications to put me back in that state of nothingness, but the reactions were so severe that now I just take some benzos to ease the transition to the sensation overloads and extreme anxiety that I now experience on a daily basis. I am angry, depressed, and feel like 20 years of my life and an expensive but short-lived career as a Clinical Lab Scientist were all for naught. Just because the doctors wouldn’t listen when I said for 15 years there was something else going on, I wasn’t schizo.
So now, 6 months later, this is the first place I have told my story to others on the spectrum. I am sorry if it sounds like a rant, but I hope someone can help guide me to the next step: acceptance. Thank you for being here and your posts, Musings, I will continue to read and try to find the answers I need so I can maybe go back to work someday. Living on Disability is not what I want, though it gives me time to think in my own house and not mooch off my parents again and to also make a new plan for my life. I have found a very nice older man that is also Aspie but he has known nearly his entire life with no wasted time in zombie land. I am wondering if it is good for us to try to make something of a life together or is he too far ahead in his understanding that he might push too hard to get me to accept it?
Recovery is not a new road for me, but this time it’s a different route; my brain hurts, all sensations are overwhelming, and I feel trapped in my home, but like all the other times, I will survive this and come out on the other side much stronger and wiser. Thanks again. Peace and acceptance to us all.
It’s great that you were finally able to get a diagnosis, though sadly yours sounds like a textbook case of how long and hard it can be. Good for you for not giving up and for advocating for yourself in spite of how hard the system makes it. That’s a huge accomplishment.
It sounds like you have a long road ahead of you in terms of recovering and getting a handle on life after diagnosis. It’s a tough journey to make at times but there is light at the end of the tunnel and it’s worth the trip.
With regard to your potential beau, there are some definite upsides to a relationships with another aspie. For one thing, he’ll likely be more comfortable with many of your aspie traits and understand things more instinctively than an NT partner. Perhaps you could tell him up front that you’ve been through a lot and you’re working toward acceptance but you’ll need time. He might be able to support you in that process in unexpected ways if you give him the opportunity. It’s hard to say without knowing the two of you, of course, but I think it would be a good idea to be straightforward in what you want/need and see how he responds. If nothing else, most of us really get honest, straightforward conversation.
I hope that you’re able to move toward a better place for you now that you have a diagnosis and that you can find peace.
Thank you for your kind words. It is very difficult now but much easier than it once was, though a bit confusing. My guy has been with me on Facebook and in person at times through the whole thing and is very supportive and is helping to guide me along this road of wonders. Our conversations are very intense and deep, something I never had with the “others” so I see good things to come in a new place of peace surrounded by nature instead of a city of often painful artificial light and too many people. I only worry about the resistance to change that seems to be a common trait among “our kind”. There will be more changes to come, but I am ready. A few months longer of soul searching and learning and I’m on my way to a new life. Thank you for your musings, I read many of them today and will continue to use your ideas and the experiences of others to find my way because I can only see light and greatness ahead of me, the darkness and misery are being left behind.
It’s great to read how positive you are about your future. My life has improved immeasurably since my diagnosis and the processing that followed. Still a ways to go, but I feel like I have a new life too and it’s amazing.
Mine too!
And it was your blog that lead me to working out I can get diagnosed!
Hi there, my name is Brendon. I am 20 years old, and here due to personal suspicion about whether I fall on the Autism spectrum, or not. I have been asked by other people who spend time with me, if I have Asperger’s, or some form of autism. I exhibit many of the characteristics of the condition, such as having intense special interests (piano, and chess), which preoccupy most of my time. I also frequently avoid eye contact when in conversation with other people, including those who I am close with, and pace as if I’m giving a lecture when I talk. I’ve also been complimented for the level of my vocabulary, and incessantly whistle, hum, or engage in repetitive behaviors to soothe myself. I have a hard time making appropriate faces in the context of certain situations, and have given rants to my friends about things I am passionate about, particularly music, and chess. I have been called overly polite before, or overly nice. Another thing, which is apparent, is some difficulty I have with motor skills. My handwriting has always been atrocious, and usually I don’t even fully form letters. I am usually very skeptical, or have a clairvoyant sense about other’s intentions, or motives. Sometimes I just have a compulsion to play piano, and strike notes repetitively, in what I would describe as a propagation of stimulation. I guess I am trying to find an answer to whether or not I do fall on the Autism spectrum, or I am simply suffering from an anxiety disorder, or some other psychological disorder. I think this would help to affirm my sense of identity, and help to explain the social difficulties, and psychological difficulties I face on a regular basis.
37 year-old male. After having difficulty communicating with my daughter today, for some reason it occurred to me that we both might have some mild form of autism.. or something. I searched “I think I might be autistic” and “adult autism symptoms.” I took the quiz and got 200/200 Aspie and 28/200 Neurotypical. I’ve gone through life diagnosed with social anxiety but always feeling something else “wrong” with me. I also have a dead marriage and a general depressed state, among other things. I think I have a high level of self-awareness, but even then I’ve heard comments from others about me or things I did that don’t fit how I view things.
I just turned 18 at the end of August, and since then I have become more and more aware of the possibility that I am most likely on the spectrum. I’ve taken the AQ test multiple times and, just the same as a lot of people here, I dismissed my high scores far above the cutoff. The test I took said from the group of “normal” people they tested, the average score was 16.4. From the group of people they tested who were all over the autism spectrum, the average score was 32. What was my same exact score all three times I took the test? 34.
I didn’t want to believe that anything was different with me, when in reality every single thought, every single behavor of mine, all pointed towards me having some form of autism of Aspergers. I graduated high school this past June, and I started college at the beginning of September. I graduated high school with a 3.7 GPA and a 12,000 dollar Cal Grant to any California university I wanted to go. However, the idea of leaving home and having to live with anyone other than my family, especially other kids my age, absolutely terrified me. I hate the idea of the traditional four year college path too. It’s too overwhelming, there’s way too much work and way too much information I would have to learn that I’d never use again outside that sanity crippling lecture hall. So, instead of taking the “opportunity of a lifetime” to go to Berkley, or USC, or UCLA, I decided to stay at home here in LA with my parents and go to LATTC (Los Angeles Trade-Technical College) to pursue one of the many odd things I’ve always been interested in: Welding. That decision was by far the best decision of my life. Welding is everything I’ve always wanted in a job: It’s fun, I get to go all over the city to different job sites rather than sitting in one place all day (I will also add that, while I haven’t been diagnosed, I believe I might have a mild form of ADD or ADHD as well), but the two most important parts of all: it’s a secure job that is repetitive, and it’s a job where I can very easily isolate myself from others and not be questioned about it, because I’m busy welding and it’s understood in the construction community that welders of all people require peace and quiet in order to achieve proper results. Not only that, but it’s a type of field that requires very minimal math (I don’t know if other people on the spectrum like numbers, but personally I hate math that is geometry/algebra and above), yet at the same time specializes it specifically for welding, so it’s fun for me because there is a REAL reason to learn it other than “I’m the teacher so do this assignment because it’s in the curriculum,” so I never have to worry anymore about the anxiety of doing work I don’t want to do like in high school. The other welders are also really nice and awesome. I’ve always hated talking to kids my own age because my interests are so different from theres (woodworking, leather working, blacksmithing, welding, etc as a kid in an LA high school), but here in the welding program I’m one of the youngest in the entire group of 70 or so guys by at least 8 years, and the average age of the guys are 30-50 years old. I love this age difference between me and the other guys because they’re far more mature than the majority of kids my age, and so for the first time in my life I can be myself and I can get excited and talk about the T-joint I welded or ask questions about reading welding symbols on blueprints, and instead of people looking lost and confused or thinking I’m weird, they get excited too and they give me pointers on making my welds better or help explain in a different way between a Back symbol and a Melt-Thru symbol on a blueprint.
Now that I’m finally coming to terms with the fact it’s more than likely I have some kind of autism, my life and my outlook on life have vastly changed, yet they haven’t at all. My whole entire life makes so much more sense when I fit in the missing piece, but at the same time it’s making other aspects of my life harder. The one downside of constantly being around guys in their 30s and 40s is that I’m constantly hearing awesome stories about places they’ve been, people they’ve met, things they’ve done, and it makes me sad because I can’t do those things. I know I have ability to, and once I graduate and start making money I’ll definitely try to get myself out there and have fun, but I just get so scared and so uncomfortable and get horrible anxiety everytime I make plans with friends or I go out. I’ve learned for the most part to have fun and ignore other people but at the same time it’s still really hard at times and once I’m done with something I’m just done and I want to go home and I become exhausted and angry and I stop talking to everyone and my mind just stops any attempt at making it seem like I have any idea how to be in a social setting.
I’m taking life one day at a time and I’m doing my best to fit in, but sometimes it gets really hard to not overreact or get sensitive about things, especially jokes made toward me, and with the fact that I’m always around construction guys and other welders too, it gets difficult to hide my true feelings when the other guys start joking around and bust my balls about my appearance or small stuff that normal people understand is just a joke.
My post feels pretty big compared to everyone else’s, but that is one of the symptoms of autism after all. I have a very bad problem of getting overly excited and getting really loud and passionate about things and more often than not I don’t stop talking until it’s far too late, and the person I’m talking to is obviously not listening to anything I’m saying. When I get into moments like that where someone asks me about something I really like, I also start to get jittery and I start stuttering or messing up words a lot and it feels like I get stuck with an adrenaline shot and my whole body and brain are going at 100 miles an hour and I completely disregard the person I’m talking to and just continue to talk until I feel like I’ve made my point or got everything out.
Even though I haven’t even finished typing this message, it already feels so good to finally get all this out of me in some kind of way. There are still a lot of things to work on, but now that I’m truly coming to terms with who I really am, life is becoming a lot better and a lot easier to manage.
I really believe as of yesterday that I am autistic to some very high functioning degree. It finally made sense and went beyond a curious what-if thought. I have 2 daughters who are on the spectrum. Looking back at my own history so much makes a lot more sense. I feel up to the challenge of consciously modifying my life where it will be beneficial. That’s about it for now. Wish I knew this years ago. I wonder about how it feels and is like to be fully neurotypical. Up until now I thought I was.