Astrid’s Journal

Blindness and visual imparment make up their own disability category, with product and service providers catering specifically to that community. Autism spectrum disorders, at least in the Netherlands, do not. “Actually, you don’t belong here, you don’t have a psychiatric illness,” nurses in the hospital have been telling me repeatedly. Yet I was diagnosed for the first time by a doctor in training to become a psychiatrist, both of my diagnosticians worked for mental health agencies, I had been in outpatient treatment with someone called a social psychiatric nurse, I qualify for support services under mental health, and I recognize many behaviors in my fellow patients, with various forms of mental illness, on the psychiatric ward.

“You don’t belong there, you’re not intellectually disabled,” my social worker tells me when I propose we call an agency for the mentally retarded to see if I can be placed there. Yet I have always received support services from agencies catering (partly or mostly) to the intellectually disabled, the people who first (unofficially) recognized my autism, worked for an agency that serves those with intellectual disabilities, my old special education school used to suspect I had an intellectual disability, and I used to recognize many behaviors in my fellow clients, who were mentally retarded, in training home.

Autism services are shattered all over the place. For adults, it is the mental health system or the system for those with developmental disabilities. For children, in the Netherlands, it is also the child/youth service system. The question whether you should be in service with a mental health agency or with an agency for those with intellectual disabilities, used to seem to be something simply about IQ: those with an IQ below 85, went to the intellectual disability agency, and those with an IQ above 85, went to the mental health agency. This post is too brief to go into the controversies around “functioning levels” or the significance measured IQ plays in them, but I used to think it worked that way. Not anymore. The RIBW, which is the Dutch agency for supported and sheltered living for those with mental illness, refused me last sumemr because I’m also blind. An agency that caters mostly to those with physical impairments but also to those with developmental disabilities, ended up accepting me. Another former training home client, who has a form of autism as well as a mild intellectual disability, ended up being accepted by the RIBW in his town.

In education, it’s not much easier. Some children with ASDs who need special education will be accepted into what is called cluster 2 special education, the school system for those with hearing impairments and speech/language difficulties. Others will end up in cluster 3, which is the school system for those with physical and/or intellectual disabilities. Most end up in cluster 4, which includes schools for those with emotional disturbance and severe psychiatric illness. IN the USA, children with autism or Asperger’s qualify fir IEPs under “other health impairment” - never mind that autistics possibly make up a larger portion of the school district’s population than those who are legally blind. (Statistically, blindness occurs in one in hundred individuals, while autism occurs in at most one in 150, but children are overrepresented among autistics and underrepresented amogn the blind.)

But, of course, the questions i not so much which bureaucratic service system will take you. Well, it is a question I face, of course, now that I need to find myself a new place to live, but it is not what affects me most. More important is which support appraoch most fits me. I am not particularly helped with the continuous rehabilitative model used in psychiatry and in most RIBWs. After all, even the “re” in “rehabilitative” makes no sense - I was never a normally-functioning person, and there is no normally-functioning person hidden behind me, so I have no need to become one (again). Resocialization - there are plans to move me to a resocialization ward - to me means regaining the functioning I had before I became unstalbe, not gaining functioning that I didn’t have then, either. Also, psychiatric medications will not cause my autistic symptoms to go away. I may take a tranquillizer to calm me when I’m melting down, but that’s about it. But I’m glad that a nurse helpe dme develop a crisis signaling plan - even though it’s not been updated in four months -, and I takew advantage of every opportunity to learn from my fellow patients and the nurses in the psychiatric hospital. On the other hand, I am not helped by being treated like I have a diminished rational understanding of things, either, and too practical an approach will not work. But alternative communication methods and daily schedules do work for me, and I used to take advantage of whatever I could learn from my intellectually disabled peers and the staff at training home.

But even the question of which support method suits me best, is not the most important thing. The mos timportant thing to me is the identity component. Autistics make up their won community, that borders with the intellectual disability community and the psychiatric patients community. Personally, I take the best of both. I feel more connected with the intellectual disability community, perhaps because of the developmental nature of my disability and its being congenital, as well as the fact that intellectual disability professionals tend to understand behavioral issues, while psychiatric illness professionals don’t tend to understand developmental deficits. But I’m not sure. Maybe, fifteen years from now, when all the autistics diagnosed in the late 1990s and early 2000s, are adults, we will have a fully formed autism/autistic community, with its own service system, that doesn’t place us into boxes that we fit into somewhat but just not quite. It’s one of the dreams that I hold onto - only fifteen years is such a long time!