Autism

High Hopes for the Low Lands, Part II

by v.d. Stel

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.