High Hopes for the Low Lands

by v.d. Stel

Published February 18, 2009 @ 09:54AM PT

[Ed. This is part of our international guest series.]

I live in the Netherlands. People that don’t live here will probably associate us with cheese, tulips, wooden shoes, lots of water, possibly milk and butter, and a number of other things (possibly about Dutch attitudes ;D) that I don’t know about. Thinking about the Netherlands, autism will probably not be the first thing on everyone’s mind, but it is on mine.

I’ll start at a beginning: getting diagnosed. In my country, diagnoses are made by psychiatrists or gz-psychologists (healthcare psychologists. I managed to find a definition in English here). DSM-latest is the standard. A large number of different sorts of tests and conversations with the one who is being diagnosed and their family have to be carried out. Waiting lists for diagnosis are very long (depending somewhat on region), unless you have the money to pay for it yourself instead of going for diagnosis at a place that insurance will cover.

We’re a small country, but regional variety in diagnoses can still be seen: some areas have a larger number of people being diagnosed PDD-NOS, other areas seem to favour Asperger’s, for example. What diagnosis you end up with seems to depend to a large extent on the psychiatrist’s whim. The only real value a diagnosis has, is to signify that you are indeed on the autism spectrum. It is not very specific. There is talk of doing away with the different diagnoses, and just having one: ASD (or, in Dutch: ASS…. I know, I know… everyone take a minute to laugh now and get it out of your system :D).

Autism is still not widely known. Almost everyone I know has either never heard of it at all, or has some stereotypical idea of it (you’re either Rainman or Einstein). The government has only recently really become aware of it as a separate entity. The NVA (Dutch Autism Society) has been around for quite some time, though.

The NVA is an advocacy organisation, but not a self-advocacy organisation. On the whole, I think it is a good organisation (and they listen to suggestions). I haven’t heard much about self-advocacy organisations in the Netherlands at all. If there is anything around here, locally, it’s managed to fly entirely under my radar, and I’m pretty autism-oriented! I do know about PAS, but I have never really looked at it in-depth, because they exclude such a large proportion of Dutch autistics: they are entirely geared towards, and only accept members with, a normal or above-average intelligence (for as far as anyone can tell, and I have to question exactly what they mean by that: do they require you to be able to speak, for example? I have no idea. I ought to check it out, even though I won’t like it no matter what their criteria are).

It would be hard to pick one single greatest difficulty that autistic people encounter in this country. It varies. Right now for me it’s jobs and housing and more specifically the accommodations needed for these things, but that wasn’t always what I struggled with most.

Our educational system is pretty much failing autistic students, of any age. I don’t know much about the options for children age 4-16/17/18 apart from the fact that the situation is very far from ideal (I take my information on this from the NVA website). I can tell you about university: when I went there I did not have my diagnosis yet, but if I had had it, it wouldn’t have made a difference: there wasn’t anything available. A few years after I had left my university, I read about it implementing its first services for autistic students. I was happy they were doing something, but what they were doing was, and is even now, painfully inadequate. Thinking back, my university wasn’t very disability-friendly in general (the location was in an old town centre, all the buildings were labyrinths of stairs and narrow hallways).

I feel more hopeful looking at housing for autistic people, imperfect though it is. Housing in general is a problem right now in my country, for anyone. It’s a very long subject, and I’ll go into more detail in another post.

Looking at what I wrote, I painted a far from perfect picture. It’s not as bad as it can seem when you’re so in the middle of it all. Services and such are imperfect but mostly, they do exist. Above all: there is a strong basis for hope that everything I’ve mentioned can improve, and not even necessarily on the long term.