Tag Archives: Autistic Community

If I’m Not Autistic, What Am I?

My psychologist removed my autism diagnosis, which I’d been first given in 2007, last summer. After a long process of negotiations, she decided to diagnose me with dependent personality disorder, borderline personality disorder traits and depressive disorder NOS. I strongly disagree particularly with the DPD label, but more importantly, I want my autism diagnosis back. I requested an independent second opinion, which I’ll be getting the first appointment for this Thursday. Just this evening, I told a leader of an autism group in the Netherlands that I’d be closing the autism chapter if the second opinion provider agreed i’m not autistic after all. Then I’d definitively consider myself, well, what? I’ve rarely used the word “allistic”, which is someone who isn’t autistic. I feel that all people with neurodevelopmental conditions essentially fall on the same spectrum. Many autistics disagree and would not allow, say, a person with ADHD into their community. Indeed, if I’m not autistic, I’m allistic, period.

There used to be some concept of “cousins” in the autistic community, which included people with other neurological or neurodevelopmental differences, such as ADHD, Tourette Syndrome or hydrocephalus. Maybe I could consider myself a “cousin”, since I was at one point diagnosed with hydrocephalus and that’s a far more hard-wired diagnosis than is autism. So I’d be an allistic cousin to the autistic comunity. The concept of “cousins”, however, is barely accepted anymore.

Besides, it’s not just about community. It’s about identity. If I’m told that after all I’m not autistic, a vital part of my identity is being destroyed. Someone compared it to losing their status as an animal lover. It’s far worse. It’s like being told I’m not blind – there is another reason I’m unable to see, but that’s not called blindness. Besides, there’s no ICD-10 or ICD-11 or where are we these days code for it. This is analogous to what my psychologist has done with respect to my autism: it isn’t there, because there is another reason I have cognitive and sensory and social-communicative difficulties, but there’s no DSM-IV code for that.

It affects services, too. If I lost my status as a blind person, I would no longer be allowed to use my white cane. I would no longer be provided with reading materials in accessible formats. I would no longer have access to services for the blind. If there’s no ICD-whatever code for explaining my lack of sight, there won’t be any other way to gain access to these accommodations or supports. I can imagine this is in part the reality for people with conversion disorder manifesting as blindness, since some service and accessible reading material providers ask for verification of the “physical basis” of one’s blindness.

If I lose my status as an autistic person and there’s no diagnosis to replace it with, I’ll not be able to access services that take into account my cognitive, sensory and social-communicative difficulties. In fact, my psychologist has already voiced her disagreement with me applying for day activities for people with traumatic or acquired brain injury. She says I have “congenital brain injury”. At least, that was her reason for removing my autism diagnosis. Since “congenital brain injury” isn’t acquired or traumatic brain injury, I won’t qualify for services for that. Since in fact “congenital brain injury” does not exist in the diagnostic handbooks, there is no help for it. It’s worse even than conversion blindness, since that can be treated somehow.

Now imagine that I, who clealry has an eye condition causing blindness, were told I had conversion blindness for lack of a better diagnosis. That’s about what it feels like being diagnosed with dependent personality disorder as a clearly neurodivergent person.

It could be worse. I could be told I’m not neurodivergent at all. This would go beyond saying I am an unfortunate case of falling between the cracks with my useless diagnosis of “congenital brain injury”. To use the blindness analogy again, this’d be like being told I am fully sighted, yet only believe I’m blind for attention, because I don’t accept my status as a short person, or whatever nonsense claim people have made as to why I erroneously believe I’m neurodivergent. This is a possible outcome of my second opinion too. After all, though I have hydrocephalus, there is no proof as per a neuropsychological evaluation that this has caused me lasting impairments. My psychologist is of this opinion to an extent and so are my parents and sister, believing I have problems because I think I do.

Back to my autism diagnosis or the lack thereof. Some people say you’re autstic if you’re autistic no matter how many professionals say you are not. They say that, if support tailored to autistics, including being part of the autistic community, works, you must be autistic. With my poor self-image, I’m not so sure this would be the case for me.

A Call to Revive the Concept of “Cousins” in the Autistic Community

Today, I was rejected from a Dutch autistic women’s forum. I had already been kicked off last August for having lost my formal autism diagnosis, but had reapplied because I am in the process of getting a second opinion. Back then, my losing my diagnosis had stirred up a lot of commentary as to why I’d been presenting as autistic for six years – the time that I’d been a member of the forum – if I wasn’t. Well, for one thing, that’s just one professional’s opinion that I’m not autistic, while three others said I am. Not recently, but since when does one lose an autism diagnosis as one ages? However, the fact that the admins doubted I’d get anything but suspicion and hostility if I came back, prompted them to reject me for good. Thankfully, people in other autism groups, especially international ones, were still welcoming and supportive.

Then I read Mel Bagg’s blog post from last month, which was on the subject of autistics and “cousins”. A “cousin” is someone who is not autisitc, but who has some significant experiences that are similar to those experienced by autistics due to a related condition. For example, Mel Baggs tells the story of a person with hydrocephalus who could relate to many of the social and communicative difficulties that autistics experience, but wasn’t autistic. As I have hydrocephalus myself, this struck a chord with me.

Mel Baggs”post is a call to revive the concept of “cousins” in the autistic community. I applaud this, for it’d finally mean I could fully feel in place in the autistic comunity again. I mean, autistic communities used to ask that no neurotypicals join or participate. now they’re asking allistics – a term I’d never heard of but which means non-autistics – to keep out. Though most internatoinal communities who state allistics are not allowed, welcome self-diagnosed autistics, I still feel a bit left out.

Like Mel Baggs says, the autistic community can be very excluisionary. An example is the Dutch forum I got kicked off from. I didn’t know this until I lost my diagnosis, but apparently it has the rule that people who suspect they’re autistic get a year to get a formal diagnosis and if they don’t get it, they’re out. I mentioned this is a women’s forum for a reason, because women have a particularly hard time getting formally diagnosed. The other main Dutch autistic community, open to all genders, doesn’t ask for a formal diagnosis. Another act of exclusion applied by autistic communities is the assumption that Aspies (people with Asperger’s Syndrome) are somehow fundamentally dfferent from other autistics, and subsequently the creation of Aspie-only spaces. Other groups allow “high-functioning” autistics in only. This, obviously, perpetuates the division of the autistic community, which perpetuates discrimination. For example, if Aspies are fundamnetally different from other autistics, people can use the idea that Aspies are not really disabled, which is populated by some, to exclude anyone they see as an Aspie from protection by laws like the ADA. They can also continue advocating for harmful “treatments” against autistic people’s wishes based on the idea that autistics who can advocate for themselves are not “autistic enough”. I don’t say that the autistic community is responsible for discrimination by non-disabled people. I do say that those who exclude some people from the community based on being “not really autistic”, “not autistic enough” or too “low-functioning” or “high-functioning”, do contribute to it.

Back to “cousins”. The criteria for autism keep changing over time. I easily met DSM-IV criteria for Asperger’s Syndrome. I probably meet DSM-5 criteria for autism spectrum disorder too. However, I also have hydrocephalus, which according to my current psychologist, means I can’t be autistic. I believe DSM-IV might agree, though DSM-5 definitely doesn’t. Does the fact that I meet the criteria for an autism spectrum disorder, mean I’m legitimately autistic, or does the fact that I have hydrocephalus, mean I’m not? Really, that shouldn’t matter, if “cousins” are welcomed into the autisitic community again. After all, what counts then is not diagnosis or self-diagnosis, but whether I relate to the lived experience of autistic people. It also means the community can no longer be divided along the lines of stereotypes, formal diagnosis or the lack thereof, or suchlike. Everyone who shares the experience of social and communication problems, is welcome. This in turn means we can form a better front against discrimination, because we no longer fall into traps like being accused of not being disabled enough for protection.