Posts by V.D. Stel
High Hopes for the Low Lands, Part II
Published February 18, 2009 @ 04:00PM PT
For all the lovely people who just love to hear me gripe and moan.
I’m the eldest of three children. When I was about 11, I found out that I was autistic, by reading books about autism in children. We had those books because my parents were trying to find out what was going on with my youngest brother, who was having a lot of problems in school (and elsewhere). Back then (the 80’s and early 90’s), no one seemed that concerned: unless the problems were immense, people expected everything would turn out fine as you grew up. When I told my mother that I thought I was autistic, she agreed. I did not have a formal diagnosis, and no one saw a reason to pursue one. That changed later on, and I received a diagnosis of Asperger’s at 24.
A diagnosis was sought, after all that time, because of the problems I had been and still am encountering. They are the kind of problems that cannot be solved by growing older. I have always had them, but because of being a child and certain decisions my parents made for me (such as which school I would attend, enrolling me in judo and swimming lessons) and our general lifestyle (geared towards autistics, since there are so many of them in our family, despite the lack of diagnoses), they were never very noticeable. When I was no longer living in that ‘system’, the problems suddenly became blatantly obvious. I’ll discuss one of them in detail.
It became apparent that I am, as they say, unable to live independently. It’s strange how something that seems so big and obvious, can go completely unnoticed. I also have a lot of trouble finding and keeping work. The state has even deemed me 100% unable to work. As I said in the previous post, I’ll elaborate a bit on the housing situation in my country:
I am living with my long-time partner in a rental apartment, social housing. In general, there is somewhat of a housing crisis going on in the Netherlands. Buying a house costs quite a lot, and if you do not make enough money to receive an adequate loan to buy, or rent expensive housing (also has income requirements), the waiting lists for social housing are… sickening. It can actually be easier to find a place to live if you are autistic (or ‘special’ in another way).
Here are some possibilities for autistic people: Group homes (‘zorgboerderijen’ and other such places) are an option, but are falling out of favour (in my opinion, rightfully so). Right now, parent- or autistic-initiated projects (more often parent-initiated) are most popular. Projects where a group of houses in the same street, or a group of apartments in the same building, are found (and sometimes built especially), for occupation by (usually) one autistic per house/apartment, of any functioning level (for lack of a better term, and usually a project will look for people who are more or less in the same ‘range’). Staff have an office or building next door, and will do as much or as little as required (both help inside the house, and outside). Rent is paid for by the inhabitants’ job or disability income. Staff is paid for by PGB, unless one has relatives with a boatload of money, who happen to be willing to pay for it themselves.
I find this an attractive option: living ‘on your own’ in a regular town and neighbourhood, but also having people quite a lot like yourself right next door. All (ideally) accommodations taken care of.
These projects are not for me, though. If you have a partner and want to live together, you’re not eligible for a place in such a project. But even if you were: if you live with a partner, you receive no help inside of the house at all unless you can pay for it yourself (unlikely). And the help you can receive outside of the house is often lacking and hard to find. No one seems to have realised yet that autistic people can have partners and live with them. Or they think that if they do, they must not need any services and accommodations. They seem to think that if you have a partner, this partner can do a full-time job, function as your ‘staff’, and do the entire household, on their own. We’ve lived this situation for some years now, and believe me, it’s hell on your relationship.
The government thinks my biggest problem is work. I say it is housing. The accommodations to help someone work seem far less complicated to implement. Besides: as long as my housing situation is too far below optimal, my work situation will suffer from that too. Better to first solve the more central issue.
High Hopes for the Low Lands
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.
