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Apr. 22nd, 2012 09:57 pm
Intersections
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nightengaleskndI’ve never been great about the boundaries between my work and hobbies. Sometimes I joke that the main difference is that work comes with paperwork and deadlines. Medicine and disability have been interests of mine for over 30 years, which is a really long time for someone not quite 36, and now I am turning them into a career. My research on the way health care providers are trained to think about disability came out of personal interest, with the relevance to my work serving as a nifty side effect, not to mention a bully pulpit. When I read websites about autism or disability law or independent living, it’s hard to tell if I am reading them for fun, or work, or personal relevance, or all three.
Recently, I have found myself increasingly surrounded by the same news from different fronts. Someone from the online disability community will post a link, such as the one showing a student with a mobility impairment whose choral director sent the rest of the students to the other side of the risers from where he sat. A few days later, the same link is sent out to the students in my LEND group, which is a program to train the next generation of professional leaders in the field of developmental disabilities. An e-mail goes out about an opportunity for autistic college students one day from the online autistic community, the next through work. Some news travels faster than others – work is still very much into Autism Awareness while my online haunts are abuzz with Autistic Acceptance activities, but there’s a definite overlap. I am generally comforted by the overlap, although it does lead to some interesting situations at times.
Last fall I took a quiz to help a colleague who was choosing between several “broad autism phenotype” tests to use in her research of parents of children with autism. You may have encountered the same quiz online. I know I have. The average score for non-autistic individuals is 16.4. 80% of adults later diagnosed with autism scored 32 or higher. I scored 32. Exactly.
“What do I do now?” I asked. “Go administer the ADOS to myself?”
The ADOS is a test used in the diagnosis of autism spectrum disorders. I’ve seen it a bunch of times, although I haven’t yet learned how to administer it myself. And even if I had, there is no way a person can administer it TO oneself, even with creative use of a mirror or video camera.
She suggested walking down the hall and asking one of the psychologists, who has experience and interest in diagnosing autism in adults.
For me, the question was not a new one, even though I had never brought the ADOS into it before. The question is, oh, 23 years old, when I read about autism in a child health encyclopedia, brought the entry to my mother and said, “except for the language part, this sounds exactly like me.” Of course, I was told there was no such thing as autism except for the language part. My mother told me that anyone who was able to read a description of autism and think about it couldn’t possibly have it.
It’s the same book from which I diagnosed my own cerebral palsy at about the same age, and pretty much the same response . From allergic conjunctivitis, to asthma to CP, I have never read about a condition in this book, thought I had it, sought a professional evaluation, and been wrong. I don’t have “medical student syndrome” where I think I have everything I read about. I often wish my diagnostic acumen applied to others was a fraction as good as it is applied to myself.
The year was 1988. The incidence of autism was listed as 2/10,000. Hans Asperger’s work was just being translated into English. Temple Grandin was still in graduate school. It was the year Rain Man came out in theaters. Many people had never heard of autism. Most people did not know someone with autism. I was familiar with autism only because I had been reading everything about disability I could get my hands on since I was 5, fiction and non-fiction, and had already read the books about sensory and mobility impairments in our local library several times over. My mother was familiar with it only because one of her cousins had a child with autism. My understanding is this child was non-verbal and rocked.
The subject was tabled for a number of years. I started college in 1994, the year Aspergers syndrome entered the DSM. I worked with some children with autism after college when I worked as a camp counselor and enjoyed it. A year or so later, my mother was reading an article about Aspergers syndrome, remembered my enjoyment of my campers, and sent me the clipping.
The year was 1999, the same year she sent me a clipping about the existence of developmental pediatrics. I had good internet access for the first time. After reading the article, I did a search on Yahoo or HotBot, called up the diagnostic criteria. Ran down the list. It sounded exactly like me.
Turns out there was such a thing as autism without the language part, after all.
This was the first of many times I have run the list for either autism or Aspergers, usually after I have it in front of me because I am involved with diagnosing a patient. Here’s my favorite copy for autism. And every time I look at the list, I ask myself how much impairment in eye gaze is “marked.” I ask myself if “failure to develop peer relationships” really means complete and total failure, and if “lack of social and emotional reciprocity” really means complete and total lack. Then I ask myself if the very act of asking those questions is a sign of concrete thinking.
I wonder where the line between typical geekery and “encompassing preoccupation with one or more restricted patterns of interest” lies, and where social anxiety ends and autistic “impairment in the ability to initiate a conversation” begins, and whether my toe-walking really is from CP because it’s so different from toe-walking from true spasticity since I don’t have spasticity.
And I read about autism, on my own time, and I go to conferences and lectures about autism, on company time. I hear a lot of autistic people talk about having autism versus not having autism, and it seems that a majority of the time, I hear myself in the descriptions of the thoughts or feelings or perceptions or behaviors of people with autism. And I hear a lot of non-autistic professionals contrast the behaviors (they usually don’t get into thoughts and feelings and perceptions) of people with and without autism, generally specifically contrasted with “us,” as the listening audience. In a majority of those cases, I also find myself more in the descriptions of those with autism, the specified “them.”
I don’t generally have the problems with pronouns that are stereotypical of some autistic people. But more and more, I’ve been uneasy with the appropriate use of “us” and “them” in these contexts. When talking about non-autistic professionals, I’m supposed to use “us.” When I’m talking about Autistic Acceptance Month, I’m expected to use “them.” These are conversations I have a lot, sometimes by choice, sometimes by necessity, or at least, necessity of the job I have chosen, and they have been getting harder, because I keep feeling I’m using the wrong pronouns.
Along the way came a conversation about the reasons for seeking a diagnosis as an adult, and I happened to be asked my opinion by the psychologist who does adult diagnosis. I gave my usual answer that the two reasons to diagnose anything in anybody were to change treatment (which can include medication, therapy, surgery, school or work accommodations) and for peace of mind. I mentioned the peace of mind I had gotten from my adult CP diagnosis. I didn’t mention that I already had peace of mind about autism without a diagnosis, but I did begin to wonder just how peaceful my mind was on the subject.
And along the way came a conversation for my LEND class where we were asked about including future trainees with disabilities as well as professionals in the disability field. I was expecting questions about the practicalities of interdisciplinary distance learning, and was suddenly on the spot explaining how we already had a trainee with a developmental disability, cerebral palsy, just one who was officially in the program as a physician. And after we hung up the conference call and I stopped shaking, I thought about the other developmental disability with which I identified but didn’t officially have. It can be hard to be a physician with Type 1 diabetes. It can be identity-wrenching to be a physician with cerebral palsy. Even in my field, is it even possible to openly be a physician with autism?
I was reminded of the old riddle about the boy in a car accident which killed his father, and the surgeon saying, “I can’t operate on this boy, he’s my son!” I live with developmental disability every day, yet I live alone, how can that be?
I handed over my old evaluations, from when I was a kid, with IQ scores and observations on my atypical eye gaze and verbal and written expression. And I handed over my college evaluation, which I had sought after failing several classes, with new IQ scores and my hilariously failed Rorshach test, in which they told me my learning profile was typical of people with non-verbal learning disabilities but that I didn’t have one. And we work together, and there was some time from when we had our initial conversation to when we finally got down to it, and she’s a trained (and refreshingly non-judgmental) observer of behavior, so she was able to make some of her own observations.
And yesterday, for a few hours, although our approach was a bit unorthodox, we put aside the roles of coworkers, the roles of faculty and fellow, the roles of what I hope is a budding friendship and is already that of coworkers with some socialization outside of the office, and set out to diagnose me.
We went through the criteria together, along with some help from the CARS-2-HF, which gives examples of no, some and impairment in functioning for different aspects of the autism spectrum. I was familiar with the old CARS, but not with this version which is designed for “high functioning” verbal individuals who are at least 6 and have IQs above 80. (Yes, the C in CARS stands for Childhood. No, I didn’t care. Since when have I ever gotten a diagnosis at the “right” time?) Whenever we had a question or disagreement about a criterion, we went back to the question of if a trait causes or caused distress and/or impairment, and talked it out.
One of the challenges diagnosing autism in a highly verbal and arguably successful adult are that the behaviors are more subtle and often read as quirky or geeky or simply weird than autistic. A lot of the externally observable behaviors are things I’ve consciously worked on over the years, and the diagnostic criteria emphasize externally observable behaviors, not how much unusual effort a person has to put into making the behavior less apparent. To this we had the added challenges of a somewhat sketchy early history, the best I’ve been able to get from my parents over the years, and of course the fact that I work in the field and stare at the diagnostic criteria on a daily basis.
Or perhaps it was helpful that I work in the field and stare at the diagnostic criteria on a daily basis.
We went through a lot, although there are some things that never came up which surprised me in retrospect. Like sensory issues. They aren’t in the DSM IV-TR, although they are expected in the upcoming DSM V, but it still seems strange to have had a conversation about autistic traits I have which didn’t include sensory issues. In terms of things which have caused impairment and distress, you can’t get much more classic than my visceral response to backrubs or my limited tolerance of soft shoes and pants. This is the first job I’ve had where I’ve never had to wear pants or scrubs at least occasionally, so it’s not as though those are merely childhood problems. We talked briefly about how I rehearse upcoming conversations in my head and talk through social situations, but didn’t go into the way I talk through everything, from jigsaw puzzles to maps to X-rays. In the end, we didn’t need to.
I meet the diagnostic criteria for autism.
I was diagnosed with autism.
I was right all along.
I have the right pronouns now and I have a right to use them now.
The chances are high that a child this week will be diagnosed with autism by an autistic developmental pediatrician. But a child was last week, and the week before, and the week prior to that as well. The boundaries between work and hobby and identity are just a little more blurred, or perhaps just a little more clear.
Yesterday I was asked how I felt and didn’t have the exact word. But today I do.
I feel complete.
Recently, I have found myself increasingly surrounded by the same news from different fronts. Someone from the online disability community will post a link, such as the one showing a student with a mobility impairment whose choral director sent the rest of the students to the other side of the risers from where he sat. A few days later, the same link is sent out to the students in my LEND group, which is a program to train the next generation of professional leaders in the field of developmental disabilities. An e-mail goes out about an opportunity for autistic college students one day from the online autistic community, the next through work. Some news travels faster than others – work is still very much into Autism Awareness while my online haunts are abuzz with Autistic Acceptance activities, but there’s a definite overlap. I am generally comforted by the overlap, although it does lead to some interesting situations at times.
Last fall I took a quiz to help a colleague who was choosing between several “broad autism phenotype” tests to use in her research of parents of children with autism. You may have encountered the same quiz online. I know I have. The average score for non-autistic individuals is 16.4. 80% of adults later diagnosed with autism scored 32 or higher. I scored 32. Exactly.
“What do I do now?” I asked. “Go administer the ADOS to myself?”
The ADOS is a test used in the diagnosis of autism spectrum disorders. I’ve seen it a bunch of times, although I haven’t yet learned how to administer it myself. And even if I had, there is no way a person can administer it TO oneself, even with creative use of a mirror or video camera.
She suggested walking down the hall and asking one of the psychologists, who has experience and interest in diagnosing autism in adults.
For me, the question was not a new one, even though I had never brought the ADOS into it before. The question is, oh, 23 years old, when I read about autism in a child health encyclopedia, brought the entry to my mother and said, “except for the language part, this sounds exactly like me.” Of course, I was told there was no such thing as autism except for the language part. My mother told me that anyone who was able to read a description of autism and think about it couldn’t possibly have it.
It’s the same book from which I diagnosed my own cerebral palsy at about the same age, and pretty much the same response . From allergic conjunctivitis, to asthma to CP, I have never read about a condition in this book, thought I had it, sought a professional evaluation, and been wrong. I don’t have “medical student syndrome” where I think I have everything I read about. I often wish my diagnostic acumen applied to others was a fraction as good as it is applied to myself.
The year was 1988. The incidence of autism was listed as 2/10,000. Hans Asperger’s work was just being translated into English. Temple Grandin was still in graduate school. It was the year Rain Man came out in theaters. Many people had never heard of autism. Most people did not know someone with autism. I was familiar with autism only because I had been reading everything about disability I could get my hands on since I was 5, fiction and non-fiction, and had already read the books about sensory and mobility impairments in our local library several times over. My mother was familiar with it only because one of her cousins had a child with autism. My understanding is this child was non-verbal and rocked.
The subject was tabled for a number of years. I started college in 1994, the year Aspergers syndrome entered the DSM. I worked with some children with autism after college when I worked as a camp counselor and enjoyed it. A year or so later, my mother was reading an article about Aspergers syndrome, remembered my enjoyment of my campers, and sent me the clipping.
The year was 1999, the same year she sent me a clipping about the existence of developmental pediatrics. I had good internet access for the first time. After reading the article, I did a search on Yahoo or HotBot, called up the diagnostic criteria. Ran down the list. It sounded exactly like me.
Turns out there was such a thing as autism without the language part, after all.
This was the first of many times I have run the list for either autism or Aspergers, usually after I have it in front of me because I am involved with diagnosing a patient. Here’s my favorite copy for autism. And every time I look at the list, I ask myself how much impairment in eye gaze is “marked.” I ask myself if “failure to develop peer relationships” really means complete and total failure, and if “lack of social and emotional reciprocity” really means complete and total lack. Then I ask myself if the very act of asking those questions is a sign of concrete thinking.
I wonder where the line between typical geekery and “encompassing preoccupation with one or more restricted patterns of interest” lies, and where social anxiety ends and autistic “impairment in the ability to initiate a conversation” begins, and whether my toe-walking really is from CP because it’s so different from toe-walking from true spasticity since I don’t have spasticity.
And I read about autism, on my own time, and I go to conferences and lectures about autism, on company time. I hear a lot of autistic people talk about having autism versus not having autism, and it seems that a majority of the time, I hear myself in the descriptions of the thoughts or feelings or perceptions or behaviors of people with autism. And I hear a lot of non-autistic professionals contrast the behaviors (they usually don’t get into thoughts and feelings and perceptions) of people with and without autism, generally specifically contrasted with “us,” as the listening audience. In a majority of those cases, I also find myself more in the descriptions of those with autism, the specified “them.”
I don’t generally have the problems with pronouns that are stereotypical of some autistic people. But more and more, I’ve been uneasy with the appropriate use of “us” and “them” in these contexts. When talking about non-autistic professionals, I’m supposed to use “us.” When I’m talking about Autistic Acceptance Month, I’m expected to use “them.” These are conversations I have a lot, sometimes by choice, sometimes by necessity, or at least, necessity of the job I have chosen, and they have been getting harder, because I keep feeling I’m using the wrong pronouns.
Along the way came a conversation about the reasons for seeking a diagnosis as an adult, and I happened to be asked my opinion by the psychologist who does adult diagnosis. I gave my usual answer that the two reasons to diagnose anything in anybody were to change treatment (which can include medication, therapy, surgery, school or work accommodations) and for peace of mind. I mentioned the peace of mind I had gotten from my adult CP diagnosis. I didn’t mention that I already had peace of mind about autism without a diagnosis, but I did begin to wonder just how peaceful my mind was on the subject.
And along the way came a conversation for my LEND class where we were asked about including future trainees with disabilities as well as professionals in the disability field. I was expecting questions about the practicalities of interdisciplinary distance learning, and was suddenly on the spot explaining how we already had a trainee with a developmental disability, cerebral palsy, just one who was officially in the program as a physician. And after we hung up the conference call and I stopped shaking, I thought about the other developmental disability with which I identified but didn’t officially have. It can be hard to be a physician with Type 1 diabetes. It can be identity-wrenching to be a physician with cerebral palsy. Even in my field, is it even possible to openly be a physician with autism?
I was reminded of the old riddle about the boy in a car accident which killed his father, and the surgeon saying, “I can’t operate on this boy, he’s my son!” I live with developmental disability every day, yet I live alone, how can that be?
I handed over my old evaluations, from when I was a kid, with IQ scores and observations on my atypical eye gaze and verbal and written expression. And I handed over my college evaluation, which I had sought after failing several classes, with new IQ scores and my hilariously failed Rorshach test, in which they told me my learning profile was typical of people with non-verbal learning disabilities but that I didn’t have one. And we work together, and there was some time from when we had our initial conversation to when we finally got down to it, and she’s a trained (and refreshingly non-judgmental) observer of behavior, so she was able to make some of her own observations.
And yesterday, for a few hours, although our approach was a bit unorthodox, we put aside the roles of coworkers, the roles of faculty and fellow, the roles of what I hope is a budding friendship and is already that of coworkers with some socialization outside of the office, and set out to diagnose me.
We went through the criteria together, along with some help from the CARS-2-HF, which gives examples of no, some and impairment in functioning for different aspects of the autism spectrum. I was familiar with the old CARS, but not with this version which is designed for “high functioning” verbal individuals who are at least 6 and have IQs above 80. (Yes, the C in CARS stands for Childhood. No, I didn’t care. Since when have I ever gotten a diagnosis at the “right” time?) Whenever we had a question or disagreement about a criterion, we went back to the question of if a trait causes or caused distress and/or impairment, and talked it out.
One of the challenges diagnosing autism in a highly verbal and arguably successful adult are that the behaviors are more subtle and often read as quirky or geeky or simply weird than autistic. A lot of the externally observable behaviors are things I’ve consciously worked on over the years, and the diagnostic criteria emphasize externally observable behaviors, not how much unusual effort a person has to put into making the behavior less apparent. To this we had the added challenges of a somewhat sketchy early history, the best I’ve been able to get from my parents over the years, and of course the fact that I work in the field and stare at the diagnostic criteria on a daily basis.
Or perhaps it was helpful that I work in the field and stare at the diagnostic criteria on a daily basis.
We went through a lot, although there are some things that never came up which surprised me in retrospect. Like sensory issues. They aren’t in the DSM IV-TR, although they are expected in the upcoming DSM V, but it still seems strange to have had a conversation about autistic traits I have which didn’t include sensory issues. In terms of things which have caused impairment and distress, you can’t get much more classic than my visceral response to backrubs or my limited tolerance of soft shoes and pants. This is the first job I’ve had where I’ve never had to wear pants or scrubs at least occasionally, so it’s not as though those are merely childhood problems. We talked briefly about how I rehearse upcoming conversations in my head and talk through social situations, but didn’t go into the way I talk through everything, from jigsaw puzzles to maps to X-rays. In the end, we didn’t need to.
I meet the diagnostic criteria for autism.
I was diagnosed with autism.
I was right all along.
I have the right pronouns now and I have a right to use them now.
The chances are high that a child this week will be diagnosed with autism by an autistic developmental pediatrician. But a child was last week, and the week before, and the week prior to that as well. The boundaries between work and hobby and identity are just a little more blurred, or perhaps just a little more clear.
Yesterday I was asked how I felt and didn’t have the exact word. But today I do.
I feel complete.
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Slightly off-topic, but relevant to something you mentioned in your post. I'm doing an independent study this fall on disability in children's literature. I have a massive book list, but wondered if you might have come across any really good (or bad) examples.
So proud of you for pursuing diagnosis. It can't have been a simple decision to make.
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We had a list in
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I also empathise with loving your work so much that the boundaries between work, hobby and identity are blurred. This is why I say that as well as working 'for the squids' (for money, which in my location is pounds sterling aka quid) I work 'for the lulz' (for fun). I think that a doctor who loves per work is likely to be a good doctor.
Another thing about your post: thank you for teaching me when Asperger's Syndrome became a recognised diagnosis. I'm haunted by memories of a classmate who, in the 1980s when we were teenagers, was perceived as weird and attention-seeking but who I've since come to perceive as possibly an Aspie.
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Besides the paperwork and other beaurcratic details, I absolutely love my work. But all I can think of when I hear "pounds sterling" is a line from The King and I, where the King of Siam announces to court that he pays the teacher, Anna, "20 Pounds each month" and when no one seems suitably impressed, shouts, "20 ENGLISH POUNDS -- STERLING!!!!" and scares everyone. I think that's where I first learned about sterling - I was 13 and it made quite an impact!
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I personally think it would be a great stride if there were more physicians out there who were open about any conditions they had that some may view as a hinder to their practice. Autism has a great range, and there are plenty of people on the higher-functioning end of the spectrum who do very well for themselves, as well as for their communities. I have a friend who falls under such a category. She has a nonverbal learning disability, which apparently falls under the autism spectrum, and she's currently pursuing a masters in social work. She's very open about her disability with her professors, coworkers, and with the clients at a shelter she's been doing volunteer work at. She specifically wants to work with abuse victims who have disabilities, as she's been one herself.
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I have similar feelings about myself. For many years I have seriously thought I might be simultaneously gifted and have a math learning disability (dyscalculia). But I've never pursued it because, as an adult, I figure there's not much point ... except that it would make me feel less crazy sometimes. :)
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I thought long and hard about what the point would be, and I wasn't going to look into it at all if I hadn't found someone I trusted. It all really comes down to having sufficient peace of mind for adults, unless we need specific accommodations at work
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http://www.wired.com/wired/archive/9.12/aqtest.html
I'm going back to finish reading now.
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I've been doing alot of reading about Asperger's and wonder, too, if I have the condition. What prompted this curiosity is when I read a book by Jodi Picoult called House Rules. Have you read this? If so, I'd love your opinion on the description of a fictional Aspie.
I don't have the diagnostic criteria of Asperger's in front of me, but as I was reading about Jacob, I was thinking "That's me" or "Yes, definitely me" or "Most certainly me!" Granted, some of his traits are way more extreme than mine, but still.....I wonder.
He said something on page 454 that put my mind at ease, somewhat. His quote was, "The concept of Asperger’s is like a flavoring added to a person and although my concentration is higher than those of others, if tested everyone would have traces of this condition too."
When I've thought about whether I may have traces of the condition, I ask myself how much of this is really Asperger's (autism, NLD?) and how much is related to my visual impairment. I'm aware that individuals who are VI also exhibit autistic traits but do not meet the required criteria to be officially diagnosed with the condition. Therefore, when I think about my symptomology, I ask myself, is my aversion to lotion related to my visual impairment, an Asspie trait, or simply a normal dislike? I also ask myself if my fascination with medicine is an Asspie trait or a normal interest? Admitedly, I don't talk about medicine with people unless it's appropriate. Unlike Jacob who brings up forensics in any conversation, i.e. the boy whom he asks if he is taking the AP test in May. When the boy says that he is, Jacob makes a comment in reference to a forensic test with these initials.
I also ask myself is my dependence upon routine is as a result of my visual impairment or an Asspie trait. Granted, my routine is not as extreme as others I have heard or read about. My closet, for instance, is not arranged by colors of the rainbow with no color touching another. I also do not eat certain colored foods on certain days like someone I read about. However, there are subtle things that are routine, for instance the order which which I perform tasks in the shower. Is that an Asspie trait or simply habit?
I'd love to discuss this further with you. Is there a way to get in touch with you privately?
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Congrats on having an "official" diagnosis! I'm sure that feels very validating!
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There is NOTHING LEFT in that health encylopedia that I think I have!
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Wait, that's autistic behaviour?
... I go "I thought everyone did that" about far too many autism diagnostic criteria >.>;
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Does this mean since the last time I tested I moved UP the spectrum?
That's not supposed to be possible, is it?
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You look at the inkblots and say "I see ink"?
In that case, I might fail, too.
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Inkblot #16 or 17, somewhere around there, looked like an acetabulum. Actually in retospect it looks more like the whole pelvic girdle, including part that looks like an acetabulum and part that looks more like the ilium, but at the time I hadn't had anatomy beyond high school bio and I thought the whole thing was the acetabulum. She looked at me as though she was considering committment papers right then and there and asked me what that was. I said it was a bone in the pelvis. She asked me to say it again. I did. She asked me how to spell it. I gave my best guess. All the other inkblots that followed just looked still like inkblots to me.
When they wrote up my evaluation, they said this showed low self esteem and lack of trying and getting overly frustrated and a bunch of other things in that vein. It never occured to them that my emotional stuff stemmed from being forced to see visual things I couldn't see rather than my inability to see the things being a symptom of emtional stuff.
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I keep forgetting if I asked you if you have resources / advice / suggestions for adults with NVLD?
Because my neuropsych was less than useless when I asked him for help, and everything I've ever found online is about EARLY INTERVENTION! -- and I think perhaps it's a bit late for me to get *that*.
I don't even know what all my blind spots and limitations are. It is very frustrating.
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Same here. See: piano teacher with interest in special and gifted education, and ... PhD student with interest in fatigue in chronic illnesses and disabilities.
The average score for non-autistic individuals is 16.4. 80% of adults later diagnosed with autism scored 32 or higher. I scored 32. Exactly.
I had taken it a bunch of times before and always scored around 33, which i always managed to discount, but last year I'd had a particularly bad time at a conference with Being Social and i filled it out after one of the days at that and got a higher score - closer to 40. I'd also managed to make a bunch of autistic and aspie friends online, most of whom i didn't know (in some cases, they didn't know) were aspie until after we'd gotten to know each other quite well.
Turns out there was such a thing as autism without the language part, after all.
How different the last decade+ of my life might have been if I had realised this. The way autism was covered in my Psychology major only reinforced stereotypes about "lack of theory of mind", impairment of verbal skills (not me AT ALL) and "extreme male brain" (thanks, Baron-Cohen). I had wondered about my particular social anxieties and... differences, but after reading what my psychology course and university library had to offer (as well as a few novels and similar over the years), I was convinced that that was not me. Ironically, i was actually followed by a "growth and development" team from birth through puberty because I was born 10 weeks early at 890g in 1981. They picked up that i was a bit dyspraxic (no-one used that word in my medical records, but i've reconstructed it from the kinds of tests i remember doing, and the advice to my parents that i be sent to gymnastics and dance classes to improve my coordination) and that i had EXCELLENT verbal skills and was shy. The part where i was made to repeat a year of kindergarten (preschool) despite excellent verbal skills because i wouldn't look people in the eye was overlooked. I guess i was an intelligent, verbal girl?
And every time I look at the list, I ask myself how much impairment in eye gaze is “marked.” I ask myself if “failure to develop peer relationships” really means complete and total failure, and if “lack of social and emotional reciprocity” really means complete and total lack. Then I ask myself if the very act of asking those questions is a sign of concrete thinking.
me me me me me.
For me, this was probably the most valuable part about getting a professional assessment - getting to ask those questions, and have someone who knows what they're doing confirm that, yes, just because I have relatively normative and/or functional "special interests", or because I can fake eye contact (even though it takes an effort with most people) doesn't mean it's not real.
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I don't think people talked about dyspraxia as much when we were kids. I mean, I'm sure the term existed but it wasn't something most people talked about, even most medical professional people. People didn't talk about sensory issues back then either. I used to tell my mother water was too dry.
I keep hoping that things will be better for the generation of autistics who are able to grow up knowing they are autistic, and with at least some people around them who understand what that means.
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