Why this Certified Genuine Autistic is unconcerned with your references [cross-posted from elsewhere]

I’m professionally-diagnosed Autistic. Diagnosed twice, actually. I received an Asperger’s diagnosis when I was thirteen, as a result of a “let’s interview you and your family and figure out which boxes we can fit you in” process. I took the ADOS when I was almost 18 and had my diagnosis changed to Autistic Disorder. My ADOS social and communication combined score is 17. The ASD cutoff is 7; the Autistic Disorder cutoff is 10.

But those aren’t the sorts of things that convince me I’m Autistic.

I self-identified when I was almost twelve. My teacher had a copy of the May 2003 edition of Time Magazine in the classroom. Something about the cover image called to me. I would sneak in during lunch to read and re-read the cover story. I don’t remember now what my reaction to it was. I’m leery of ascribing it too much significance. But I know I had spent years secretly reading child development books on my parents’ shelves trying desperately to find what it was that made me wrong. Nothing had quite fit. I doubt this particular piece seemed like it fit exactly; it was a rather terrible article. It piqued my interest, though.

Yahoo!Directories was still a thing back then. (It apparently still is, but isn’t directly accessible from the main page.) I found autistics.org through it and Moggy Mania through that. I started reading discussion groups maintained by Autistic people. These were the things that solidified my identification. Finally, there were people whose experiences of the world seemed to match my own.

But doubt ate away at me. I wasn’t professionally confirmed. Maybe I was just a generic defective failure person grasping at any explanation that presented itself. Maybe it was just anxiety or the result of cystic fibrosis altering my experiences enough that I couldn’t relate to the majority of children my age.

My mom wanted me to see a psychologist anyway. I agreed to do so. I didn’t mention anything about the autism spectrum in the interview process; I had already been shot down by my parents when I had mentioned the possibility before and was too frightened to bring it up again. But I had spent enough time knowing what autism was and considering how my experiences lined up with the criteria that it couldn’t not influence my answers to my evaluators’ questions. I was aware of this.

The psychologist asked if I had ever heard of Asperger’s Disorder. She found my recitation of the DSM-IV criteria startling and gave me a definite diagnosis.

Judging by everything I’ve read, this should have alleviated my doubt. It didn’t, because I gave her information I already knew and she applied it to standards I already knew and therefore I couldn’t see any additional value. The possibility that I was now an evil, manipulative person who managed to con a professional into giving me a diagnosis got stuck in my mind. I had the same response four years later to my ADOS results. I knew what an Autistic person looked like to the tester. How could I be certain that I hadn’t subconsciously altered my behavior to convince her?

So here I am: an Autistic person with appropriate credentials. But I can’t base my identity on those credentials. The information they’re based on is too limited. I can’t possibly have fit the breadth and depth of my life into those evaluations.

What I do have is a book full of “stories” from preschool. In which my teacher would say “Tell me a story about this fish/cat/frog.” And there are pages and pages consisting only of the words “this fish/this cat/this frog.” I have my mother’s account of enrolling me in a roller-skating class at age six and the teacher’s concern over my spending the majority of the class sitting silently in the center of the rink. And my father’s cheerful stories of my memorization of National Geographic captions at age 2.5. The fact that I was only allowed to start kindergarten at six due to claimed social/emotional immaturity. That my elementary education was split between classes with children much older and much younger than me due to wildly disparate skill sets. The memories of my daycare teachers’ and my grandmother’s frustration at my inability to not retch when eating applesauce or unevenly-textured meat. The comment I wrote in my second grade end of year review: that the part of class I liked least was the noise produced by my classmates. Said classmates’ exasperated attempts to get me to stop talking about cheetahs and sea otters.

I have to ground myself in these details, or I’ll tie my mind in knots attempting to convince myself I’m not Autistic, just evil. Because these are all specific things that happened in my life. And they haven’t been twisted around to fit anything. They’re just parts of my life that happen to have massive parallels with parts of other Autistic people’s lives.

There are things in the present too. The feeling of safety at Autreat (“where everybody knows your shape” is the bit of echolalia that keeps floating through my head — I was reading Feet of Clay on the way there). I can compare it to the large numbers of social events I’ve participated in over the past year in which I wasn’t in the neurological majority; almost every conversation I had in those contexts sputtered to a halt within three sentences — if I was even able to participate at all. At Autreat, I still had problems with receptive language processing, but the extent of my participation was far closer to equal. The nature of my social successes as well. I have friends and a romantic partner now. I sometimes worry I might be deemed “recovered” on that basis. But they’re the sorts of people who tend to be magnets for other Autistic people as well, and the contrast in my success with them versus my failure with others is significant.

The patterns of my life remind me who I am. The abstracted assertions of professionals make me forget and deny, even when they’re explicitly written to be about me. I need the grounding of community.

And all this is why I can’t distrust people or condone ejecting them from our spaces purely on the basis that their identity wasn’t handed to them by people with the right letters after their names. Because I’ve been both places, and the value of years of weighing evidence and evaluating where I belong is so much more than that of two-to-three hours of subjective evaluation in which both the information conveyed by the tested and the conclusions drawn by the tester are influenced by pre-existing conclusions on both ends. The former is still what I cling to when in doubt.

Lies, Statistics, and Autism Speaks

Autism Speaks has a factsheet about autism, of which at least one portion (“Prevalence vs. Private Funding”) regularly goes viral. It contains claims about the prevalence of autism as compared to the prevalence of four childhood diseases, and supposed “facts” about the amount of funding that goes to researching each of the five conditions.

Unfortunately, Autism Speaks does not provide a source for the funding information. I requested the information in one sentence: “Could you please provide the source for the funding numbers provided in the ‘Prevalence vs. Private Funding’ section of your ‘Facts About Autism’ page?”

I received a reply from their Director of Science Communication, Jessica Sachs, this morning. Unfortunately, she provided no information regarding what I had explicitly requested: the funding amounts. However, she did provide supposed sources for the claimed disease rates, with the exception of muscular dystrophy.

Of these, the stated juvenile diabetes rate appears accurate. However, the link to the Juvenile Diabetes Research Foundation’s Fact Sheet that Sachs provided does not provide information necessary to substantiate the claim. The closest it comes to listing incidence is the number of diagnoses per year: “more than 15,000.” Since this number gives no information about the distribution of diagnoses across ages, it is insufficient for determining the number or percentage of children diagnosed with diabetes at any point in time. The National Institutes of Health’s “Overview of Diabetes in Children and Adolescents” gives a rate of 0.26% of the US population below age twenty, which translates to approximately 1 in 500. JDRF’s FAQ provides an estimate of between 1 in 400 and 1 in 500.

From here on out, it gets worse. Sachs provided no information about muscular dystrophy, which Autism Speaks claims affects 1 in 100,000. According to the NIH, the rate of Duchenne muscular dystrophy alone is 1 in 3,600 male infants.  The rate of Spinal Muscular Atrophy is between 1 in 6,000 and 1 in 10,000. Clearly, the rate of muscular dystrophy in general cannot be 1 in 100,000. In fact, the only thing beyond autism fear-mongering that showed up when I searched for muscular dystrophy at that incidence is a rare subtype called X-linked Emery-Dreifuss muscular dystrophy.

Autism Speaks’ official stated incidence of Pediatric AIDS is 1 in 300. This is rather spectacularly vague, considering the tremendous variation between countries. However, the link Sachs provided was to the incidence within the USA. Unfortunately, the link also goes to a server error. The number Sachs listed out for me, supposedly collected in October 2009, is 100 to 200 children per year. That matches the Elisabeth Glaser Pediatric AIDS Foundation’s claims about United States incidence here, but still leaves the problem of that being nowhere near matching an incidence of 1 in 300 children affected. In fact, even UNICEF does not have an estimate of the number of children affected by AIDS in the United States. With regard to the global population, UNICEF’s Childinfo.org estimates that as of 2010, there were approximately 3.4 million children under 15 affected by HIV/AIDS. The 2010 World Bank estimate of the global population was 6,855,230,000. Euromonitor International states the percentage of the world population under age 14 as of 2010 to be 26.2. This calculates out to 1,782,359,800 children under age 14. Using the Childinfo.org statistics, this means approximately 1 in 524 children has HIV/AIDS. While Autism Speaks isn’t as far off as they are on muscular dystrophy, their number still doesn’t match any reliable source.

Finding straightforward leukemia information is tricky. In fact, Sachs provided me with a general “cancer” rate of 10,000 per year. She also provided me with a link to this page, which is far more useful for learning what leukemia is than it is for tracking down a solid diagnostic rate. Cancer.gov states an incidence rate of all childhood cancers of between 1 in 5,000 and 1 in 10,000. With regard to childhood cancers specifically called “leukemias,” the CDC incidence from 2008 is 46.9 per 1,000,000 or approximately 1 in 21,300. Looking beyond childhood, the National Cancer Institute’s age-adjusted incidence rate for leukemia is 12.5 per 100,000 or approximately 1 in 8,000. This data may not include children, but that is not relevant for the evaluation of Autism Speaks’ claims; the rates for both children and adults are substantially below the stated 1 in 1200 regardless of age or specific type of cancer diagnosis.

Admittedly, these errors are not entirely to Autism Speaks’ benefit, since in two of the four cases they overstate the incidence of the disease in question. However, the lack of factual basis for all but one of the claims is alarming in and of itself. I would not be surprised to find that the funding amounts are similarly inaccurate.