a parliament of owls

life with asperger's

Category: Diagnosis

Advice: A Teen Asks Why Asperger’s Isn’t an Excuse

This teen’s question on a public Asperger’s forum touches on one of my anxieties about upcoming generations who have had the benefit of early diagnosis. Those of us who grew up without one had the difficulty of learning to compensate because we had challenges that were not made sense of by a diagnosis and usually received no support for these issues. In some ways, this made us strong. We pushed through, when we did, and made it work. So, too, do many younger Aspies who have been diagnosed and received supports. But then there are others who take the diagnosis as an excuse not to force themselves to do difficult or uncomfortable things or to practice self-control. As parents, teachers, mentors, and friends, we must ask that Aspies who receive early diagnosis continue to push themselves so that they can, as much as possible, become independent and contributing adults. Temple Grandin often talks practically and compassionately to Aspies and their parents about the importance of this.

Question:

“My parents tell me not to use Asperger’s an excuse to misbehave. I don’t understand that. I am not a neurotypical. I feel that my Asperger’s defines who I am. How come it’s not an excuse for misbehavior at home?” [In a follow-up discussion to a different reply, the writer added that the misbehavior at home was refusing to do last-minute chores and being disrespectful to his parents in the way he declined.]

My Reply:

I agree with your parents to some extent. I am autistic and so is my son. If you are high-functioning, then you can be expected to take care of your hygiene, eat properly, pick up around the house (to contribute your share of the work in living there), perform in school, and, as you age, support yourself with a job. The world, even your parents, do not owe you a free pass / a living. You can learn to compensate for aspects of your diagnosis that make some of these things more challenging.

In turn, your parents should help you learn to compensate, such as by explaining ways of managing a schedule or doing tasks without getting sensory triggered (I provide my son with kitchen gloves for tasks like taking out the garbage and allow him to put away clean dishes since he hates touching dirty ones — I do that part instead). They should learn the importance of providing you with advance notice of having to do things (like do a chore or go on an outing to the store or a relative’s). If they forget, do as they ask but also request (politely) advance notice in the future to help manage your stress. Keep in mind that when you enter work life you will get last minute requests, too — you need to train yourself to tolerate this as much as possible. I know it is stressful — I have the same issue.

I’m not sure in what other ways your parents might think you are misbehaving. If it’s something like focusing on your interests (what some people call “indulging”), I would say that is self-care and not misbehavior. You need to do this to stay well emotionally. In that case, stand up for it. Your parents may become more accepting of this if your other behaviors fall into line with what should be expected of all capable adults or forming adults. If it’s for being irritable or rude, then apologize (even if, yes, this is attributable to your diagnosis), and try to do better. It’s not fun to live with someone who hurts your feelings, even if there’s an explanation for it.

TLDR: A high-functioning autism diagnosis does not excuse any of us from being responsible for ourselves or contributing to the world, even if some of that is more difficult for us.

[Question edited for consistency of spelling and concision.]

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Responding to /Neurotribes/

I’ve just finished reading Steve Silberman’s Neurotribes. This book creates the first comprehensive history of autistics, linking us to our progression of diagnosis and treatment in the West and to other cultural groups including the disability activist movement (within autism, first dominated by parents and then taken up by ourselves) and electronics / computer / ham radio / internet and sci fi-fantasy fandoms (which gave us a home among other eccentrics — my husband and I have long called sci fi-fantasy fandom our “tribe”). The first third or so of the book hit me hard — it was difficult to get through — because of the misunderstanding and mistreatment of people on the spectrum (dehumanization, extermination, institutionalization).

The overall narrative moves from how we were defined by others, through the lens of pathology, to become defined in cooperation with others as well as by and for ourselves. Some of the writing is feel-good glib (too neatly concluded, too optimistically joined — he loves a hero narrative) and the author definitely takes sides on some of our internal controversies (sides I usually agree with, but sides nonetheless). For example, not everyone diagnosed with autism feels comfortable with its being understood as either a major filter for our perception / cognition or as the/a crucial dimension of our subjectivity / social identification.

Why does this matter? Because, by extension, not everyone diagnosed with autism wants to be part of a community of autistics or wants to belong to a cultural group identified with autism. Even those of us who do have our limits. Silberman seems to think that these are by default good things, empowering things — he has an extrovert’s bias. Community is always already positive, desirable, even to the point of nostalgic fantasies of autistics meeting in conventions and grokking one another, sleeping in public near one another, stimming together in hallways — I can’t tell you how uncomfortable these descriptions of communal experiences made me (head for the hills!).

Despite discomfort with the rather emotional and physically embodied models of community Silberman evokes, I spend hours each week giving anonymous advice online to other autistics and their loved ones and benefit from feeling a part of that community because it has helped me to understand and accept myself. At the same time, my son would rather not be part of the community, or even think of himself primarily as autistic, but pass as neurotypical because that helps him to feel unremarked and capable. Both can be decent options as long as the clinical label isn’t used to exclude, reduce, and deny (as it has too often in the past and sometimes continues to do in the present).

But Silberman also champions the cause of neurodiversity and its value to society. Although that is often reduced to its practical benefits (ala Temple Grandin), maybe that is a start to others accepting that humanity benefits when we broaden our sense of who matters (all of us) and how we ought to treat them (with kindness and inclusion). For this and for the comprehensive history of autistics told here for the first time, this is truly a valuable book, one that expands our potential for understanding difference along a different vector than we usually think of and are more familiar with as a general society or as academics (race, gender, class, sexuality, religion, etc.).

8 Thoughts that Can Help with Accepting Your Asperger’s Diagnosis

1) You are still the same person you were before the diagnosis. The diagnosis is just a label.

2) The diagnosis only gathers together and describes some things about you. It isn’t the whole of you.

3) You can use this new self-knowledge to improve your life. For example, realizing that my autism caused sensory issues, and associated stress, I began to take them more seriously and to improve my environment to reduce stress. That’s made me a happier person.

4) You now belong to a community of other people on the spectrum. You’ll find that we have many shared experiences and that you’re not as alone or as different as you might have felt before.

5) No one else has to know. It’s your right to tell or not tell anyone about your diagnosis.

6) Depending on your challenges, being diagnosed with high functioning autism / Asperger’s doesn’t mean you can’t accomplish whatever your goals might be. I’ve been married 30 years, have a doctorate, a great kid, etc. You might need to strategize how to accomplish your goals so that you can succeed given your challenges, but you can do it.

7)  This developmental difference brings gifts as well as challenges. Many of us have a range of better-than-average abilities as a result, such as fluid / abstract thinking; creative problem-solving; the ability to observe and remember detail; the ability to find and follow patterns; intensity of interests and concentration on them; the ability to think in systems and/or visually; extra spatial, mathematical, technical, or verbal capacity, and so on.

8) Everyone has challenges. This one just happens to be yours. You may not know what other people are dealing with (diabetes, an alcoholic parent, problems covering the rent, a broken heart), but everyone is dealing with something. It’s not what we’re challenged with but how we face those challenges on a daily basis that matters.

The New (Ab)normal: On Being Diagnosed as an Adult with ASD

During my first meeting with the adult autism diagnostic specialist, we discussed how trendy high functioning autism / Asperger’s has become (it’s commonly referred to now as the new ADHD), and how this trend has driven more people than ever to seek diagnoses for their children and themselves. For many people, that search begins on the Internet, when they take one of the handful of interactive diagnostic indicators, such as The AQ Test, based on Baron-Cohen’s work. Sometimes, they stop by the forums on Wrong Planet or Reddit to ask whether that means they have it, and we always tell them the same thing. It’s one indicator, there are many related diagnoses, and only a professional can tell you for sure. The reason I had been so certain in my self-diagnosis is because psychology has been — at least since my undergraduate years — a special interest. When my son was diagnosed, I began to read autism research and literature continually. I had a good foundation in differential diagnoses by the time I sought an official diagnosis. And yet, I felt trepidation. What if I had been wrong? What if my self-understanding was not confirmed?

So that was my state of mind when, in our initial consultation, the assessment specialist (let’s call her Dr. L) and I agreed that Asperger’s is over-diagnosed — for my part because I wanted to assure her that I wasn’t seeking a diagnosis as a result of its trendiness and for her part, perhaps, because she wanted to prepare me to be disappointed. Dr. L explained how rigorous the testing process would be, and how much of it would seek to validate the different diagnostic dimensions that add up to autism through quantifiable means. There would be self-reports (covering everything from sensory processing to obsessive compulsivity to attention to mood) and a report from my spouse (someone who knew me well that I was permitted to choose). But there would be much more tests of reasoning and aptitude: IQ, attention, executive functioning, empathy (ability to recognize emotions on faces and by voice), space-time, reaction speed. My social interaction with the assistant conducting the tests was even being analyzed, as well as my mannerisms and grooming, as I discovered later from having read the lengthy report. Of all of these, Dr. L explained, the IQ test served as the foundation of everything else. What she would be looking for is variation between different areas of ability. The degree of variation would be indicative of autism.

By my choice, we completed all of the necessary testing within a single month (November 2013) over the course of 4 sessions that lasted 2 hours each. These were in addition to the initial interview and the self-reports, which I completed at home over another 3 hours or so. It had taken me nearly 3 months to initiate the first appointment (mid-August to end-October). Once testing had ended, it took another 3 months to get the report (February 2014). Dr. L met with me to explain the diagnosis and answer any questions I had, and then provided the report for pick-up about a week later.

The diagnosis: “Autism spectrum disorder; level one severity; without accompanying intellectual impairment; without accompanying language impairment [299.00].”

299.00 is the diagnostic code from the DSM-V for Autistic Spectrum Disorder. Autism Spectrum Disorders include Autistic Disorder (AD), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder (CDD), and Rett Syndrome. The DSM-V famously eliminated the Asperger’s diagnosis as a separate category in May 2013, leaving those who would have been diagnosed with Asperger’s (as my son had been in 2008) to be either diagnosed as autistic or left off the spectrum (perhaps with the new diagnosis of “social communication disorder” or SCD). At the same time, the DSM-V sought to create an autism spectrum diagnosis that was “more accurate, and medically and scientifically useful.” A research team led by Kristine Kulage (Director, Office of Scholarship and Research Development at Columbia Nursing) concluded from a literature review (Journal of Autism and Developmental Disorders, February 2014) that this change in the DSM-V has already resulted in a “statistically significant decrease in ASD diagnosis of 31 percent using the new manual, DSM-5, compared with the number of cases of ASD that would have been identified under the previous version of the manual, DSM-IV-TR.” The study also found that “Under DSM-5, there was a statistically significant decrease in AD diagnosis of 22 percent, compared with the fourth edition of the manual, the meta-analysis found. There was also a statistically significant decrease of 70 percent in diagnosis of PDD-NOS. While diagnosis of Asperger’s also declined under DSM-5, the reduction was not statistically significant. In addition, the study found that some individuals who no longer met the criteria for an ASD diagnosis under DSM-5 would also fail to meet the criteria for SCD.”

So here I am today, with this hard-won diagnosis. And how do I feel? Perhaps my strongest initial emotion was vindication. My previous employer had discriminated against me based on my autistic traits, which had sent me on a path to seeking diagnosis. I had been told I would not be accommodated in the workplace, because I only believed I was autistic. I had no proof. Now, even though I had resigned the position months before, I had proof.

I felt relieved, too. My son was diagnosed with Asperger’s just before entering the second grade. It was through helping with his diagnosis (I was his intimate other reporting to the child assessment psychologist) that I realized I was probably an Aspie. Over the intervening years (my son is now in the 7th grade), we had bonded over our identity as Aspies, with traits and behaviors that echo one another and other Aspies so well that we can’t help but feel like our own tribe. To be told that this did not apply to me would have hurt terribly; I would not have known how to explain it to him. And through having participated in autism advocacy and forums, I would have felt separated from a community I’ve come to value being a part of. There would have been a loss in all of this, as well as hit to my sense of self. When I learned what Asperger’s and high functioning autism were, not just on the surface (a list of traits) but in their daily lived experiences, I had truly had a moment of self-revelation. I had understood not only more about who I was, but also that the what of what I am had been shaping the who all along. Biology may not be destiny, but it does determine some of who we are and how we are in the world.

I do not feel that I have changed or lost myself through achieving a diagnosis, but I have not found myself, either. I am the same person I have always been. I just have a deeper sense of self-understanding as well as connection with others who are (ab)normal like me.

Claiming Asperger’s

Many people are wondering aloud these days about why they are hearing so much about autism in general and Asperger’s in particular. It’s legitimate to question why, and whether it’s always been around and in such prevalence. In March of this year, a new U.S. government report claimed that 1 in 50 school children are on the spectrum, higher yet than the 1 in 88 reported in a different report the year before. The March report was based on 100,000 parent surveys, which may be more suggestive of increased diagnoses and request for services than an increase in actual numbers of cases. Even so, the relatively large number of diagnoses raises the concern that autism spectrum disorders are a fad. Within the high-functioning autism community, one effect of this concern is that officially diagnosed autistics or those who love them go after those who are self-identified.

I am a self-identified high-functioning autistic. I do not yet have an official medical diagnosis, although my son has been officially diagnosed. As I describe in an earlier post, I first came to realize I share his diagnosis during the process of developing it in cooperation with staff at a local university psychological services center. I’ve tested this against the Baron-Cohen Autism Spectrum Quotient, which is a diagnostic inventory developed at the Autism Research Centre at the University of Cambridge; it’s so popularized now, it’s even appeared in Wired. Any score of 32 or higher is suggestive of ASD. I consistently score over that. My last evaluation two days ago placed me at 36. I’m now in the process of seeking a medical diagnosis, which I have put off because I had not needed it previously, being well adapted to work and life in general. Besides, achieving a diagnosis for a developmental condition like Asperger’s is no quick feat. It means an initial hour consultation followed by four two-hour testing sessions, as well as completing a long self-assessment questionnaire. And it’s not free; I’m fortunate to have the means to do it through employer-provided health insurance.

It can also be difficult to find a clinician who has expertise in and the availability to do adult Asperger’s assessments. Most clinicians are geared to assess children, which is understandable given that it is a developmental issue that can impact academic success and psychosocial progress. Those of us who seek adult diagnoses now were raised in generations when there was less clinical and social awareness of high-functioning autism, and certainly even that much less awareness again that females might be so diagnosed. Males are still much more frequently diagnosed (at a ratio of 4:1 with autism in general and 9:1 with Asperger’s), perhaps in large part because the main diagnostic criteria for Asperger’s was originally based on cases of boys alone.

Temple Grandin, now a famous instance of a woman with Asperger’s, as well as Judy Endow, an advocate on the spectrum, have both made progress in dispelling the myth that high-functioning autism is a boys’ club. Good work has also been done in recent years on the differences between male and female high-functioning autistics, especially by Tony Atwood. It’s in reading Atwood’s work on girls and women with Asperger’s that I had once again that shock of self-recognition I had experienced during my son’s diagnostic process. Once again I realized that so many of the characteristics I had thought were unique to myself were shared by others on the spectrum, this time female others.

Here’s one striking example: Much has been made of boy’s Asperger’s culture revolving around obsessions with trains, legos, and video games. My own son, now 12, continues to be absorbed in video games and, when he was younger, shared an equal absorption in trains and legos. People outside of the high-functioning autistic community might be quick to say that all boys tend to like these things, but the distinction is in the degree. Boys on the spectrum often show an interest in trains, legos, and video games to the exclusion of any other forms of play (except perhaps other mechanical or construction sets), any other kinds of interests (except a limited number of other obsessions, such as construction machines or insects or extreme weather phenomena), or any other topics of discussion. Girls on the spectrum, according to Atwood, often project themselves into reading, instead, and especially reading in the genre of fantasy. He reasons that girls on the spectrum find power in fantasy, identifying with characters who overcome through their special abilities, as well as finding in fantasy worlds a safe haven from social anxiety. By the time I had finished middle school, I had read Tolkien’s Middle Earth works, including the Silmarillion, seventeen times. I had read his letters and many books on his work, the myths on which they were based, and a biography. I had even kept an encrypted journal in Elvish script. And then, years later, there was a doctorate in British literature with a specialization in fairy tale and fantasy literature. In one of his books, Atwood even names literature professor as a common and effective career choice for women with Asperger’s. My hands shook when I held that book, reading what I had always taken to be the happenstance story of myself told with unlikely accuracy.

I can understand the desire of those already diagnosed with high-functioning autism to want to protect the value of the diagnosis from seeming to apply to everyone who has social anxiety or introversion or a certain nerdy or geeky turn. There seems to be some confusion about how these other qualities differ from this specific developmental condition, which can itself present in subtly nuanced ways across personalities. But I also think it’s okay for people to wonder if this diagnosis applies to them, to be Asperger’s curious or questioning, to use an analogy to LGBT culture. And I think that for many and maybe even most people, the journey to accepting a diagnosis is not an easy one, not when the diagnosis is understood as a potential set of costs as well as benefits. Eccentricity may be charming in short bursts, and adopting an eccentric pose may be fun in certain circumstances, but to be an eccentric by neurological fiat when one desires to be accepted, liked, and even unremarked and remarkable is an uncomfortable thing. There may be those of us on the spectrum who ultimately wear the diagnosis as if it were a badge of honor, who might take it as a point of pride to be different and therefore special, but this is itself an act of bravery and perhaps of defiance from those who have no choice but to live on the social fringe.

What’s in a name? On the loss of Asperger’s.

As many media outlets have reported, in late May 2013, the DSM-V eliminated Asperger’s as a separate diagnosis and merged it with Autism Spectrum Disorders. Most Aspies, as far as I can tell, continue to make a distinction. Wherever I find Aspies talking about this diagnostic restructuring (e.g., in the media or in Wrong Planet forums), they seem to be holding on to a distinct identity they have proudly associated with verbal acuity and high intelligence. They want to distance themselves from the greater perceived dysfunction of Classic Autism. For me, however, there’s no sense of loss. That’s because, despite some apparent behavioral and emerging, neurological fine points (such as those suggested by a recent Boston Children’s Hospital EEG study suggests), I believe that we’re more related than not. The distinction is a question of degree rather than difference.

Both Aspies and Classic Autistics have trouble, for example, with executive functioning. Weak executive functioning takes different forms, giving us difficulty in organizing thought into sequence, sequence into schedule, schedule into action plan. Or, difficulty in big picturing over detailing, detail to the exact degree, to be accurate, true, perfect, right to the idea.

Or, difficulty in coordinating movement, fine or gross, unless we put all of our attention there, and then, it’s finally focused. Bang. Some of us even join the circus–yes, I know a professor whose adult Aspie daughter has trained for and joined a circus, and on the high-wire no less, but that’s another story. And it’s a lot more usual for us to have trouble chewing gum and walking at the same time, anyway. Which is not a joke. I once saw my father, who I suspect is more than a little like me, let the gum fall right out of his mouth when he shifted inwardly to concentrate on walking up an incline at the mall. A gentle incline meant for rubber-tipped walkers and baby strollers. A healthy man in his 40s. Put it another way, we are better at processing geometric stimuli than biological motor stimuli in performing tasks. Go figure.

To wit, both Aspies and Classic Autistics have issues with sensory processing. As a for instance, our brains don’t filter sound well. We hear everything, even minute sounds, and we hear them all at once (again in researchese, we have a biochemically defective signal-to-noise filter — and that same brain mechanism for sensory processing may be related to social functioning). If someone speaks to us through that weave of everything, we have trouble hearing them or concentrating on what they are saying. We’re more likely to hear a conversation on the other side of the room. There’s even some evidence that like Classic Autistics, our brains don’t reward us for feeling a human touch or hearing a human voice. And why would you listen for something that didn’t bring you pleasure on a level so primitive you don’t even have to think about it? Maybe that’s why we sometimes turn entirely inward, unable to hear a thing, even when it’s crashing around us, because we’re in another place, one inaccessible to anyone else. We’ve got that in common, too.

Aspies are often incredibly verbal, and that seems like one big difference between us and Classic Autistics, who have trouble communicating verbally. We talk too much, use too many big words. We monologue rather than dialogue. But, we also stop up when it comes to talking about feelings. When we feel something strongly, our nervous systems overload. Tears well up and fall. Hands shake. Words stutter and fail. There’s a surging feeling inside, blood, electricity, blanking light, and very nearly a ringing in the ears. Sometimes we, too, have meltdowns. Flailing arms, or a panicked rush away, or a repeated verbal push back against the assault, “No, no, no!” The overwhelm requires a response, to force the feelings back down, to keep from drowning on the inside. Or, if not drowned, we are cast out, literally beside ourselves. It’s a terrible, naked place to be, skinned before the world.

The good news is, there’s comfort for all of us in patterns. Patterns of all kinds. Pattern, period. This can be the pattern of a structured environment and an expected schedule. The pattern of interaction with familiar people. For Aspies, familiarity often breeds attachment, just as when the android character Lt. Commander Data on Star Trek: Next Generation, who is supposedly programmed without feeling, describes his form of affection as being “used to” someone. Anyone who we couldn’t get used to we’d keep at a distance, circumstances allowing; those we do allow close have been welcomed on purpose and for reason, even if we don’t look at them, or hug them, or say their name. They don’t rub us raw like the rest of the world. What a strange description of love, you might say. But it’s love just the same.

Then, there are the classic patterns in which we find comfort: a sequence of numbers, an organized image, a piece of music. Repetitions with variation. These are sometimes so comforting and so absorbing that we are disturbed when they are disrupted or when we are unable to follow them through to the finish. Teachers sometimes call our difficulty in leaving a pattern “trouble with transitions.” That does not really capture it. Our head is immersed in a model of our own making. That model might be a collection, a fictional world, a machine, an array of arresting colors. Being asked to transition is more like, in TS Eliot’s turn of phrase, daring to disturb the universe. It’s not the universe outside that is being disturbed; it’s the one we’re building in our heads.