Dear parents of autistic children, we need to have a talk about why it can be so hard to be a parent of an autistic kid.
A couple of days ago I tweeted saying that parents should stop blaming their autistic kids for everything that’s hard in their lives, and somebody responded saying that navigating services for disabled children is a nightmare. Since I’m not only autistic and disabled by a neurological disease myself, but also have an autistic kid, I know this very well. Because no, it’s not enough that most services offered are useless, me and my partner are expected to run to a hell of o lot of meetings to get information about certain services. It’s the same information over and over, about services that are of no use to us, but they work as gatekeeping to other kinds of services (the latest is that we’re applying for services for me, because of worsening of my ME and that means that my partner has to go to one more meeting about services for my kid). As if it wasn’t enough that we have to spend so much time and energy on useless and inaccessible meetings, getting what we actually need seems almost impossible. My kid needs an accessible school, but that’s nobody’s responsibility. My kid needs accessible healthcare for his astma and hypermobile joints, but that’s really not a service that exists. I know very well that navigating services can be very demanding and frustraing.
But. That’s not because our child is autistic.
The reason for why navigating services is hell is because of an ableist society who has created a very ableist system of services for disabled people.
How services are organized differs between different countries which means that what I will describe here might not apply to all of you, but I will give you a couple of examples of how, where I live, services for disabled people are organized based on ableist ideas.
- Services are based on the idea that disabled people, especially autistic children, should aim at making them less deviant.
- Disabled people need to prove that we need the services we apply for, while people without disabilities have access to plenty of services that they get without having to prove their need for them. Because of ableist propaganda claiming that disabled people cheat a lot to get services we really don’t need, it’s seen as normal that service applicants have to exhaust ourselves and give up our integrity to apply for, and then maintain services.
- The application process for many kinds of services means a loss of integrity. A whole bunch of people will demand access to medical records, ask very personal questions that really have nothing to do with the service (sex life, genitals, toilet habits) and sometimes demand to inspect and scrutinize the service applicant in intimate situations such as showering, toilet visits etc.
- Bureaucracy isn’t well coordinated and different institutions are responsible for different kinds of services, and they don’t communicate with each other, meaning that service applicants have to repeat the same information many times and coordinate information between different institutions. This takes a lot of time and energy and usually means that a person without disabilities has to be involved in applying for and then implementing and maintaining services.
- A lot of autism experts and other people who claim to work for autistic (and other disabled people) defend this system, basically telling autistic people that we lack judgement when we protest against this system.
This system makes it very hard to be disabled and care for a disabled child, but it doesn’t have to be like this. The fact that this is what it means navigating services is a consequence of political decisions. Ableist decisions. Because if disabled people weren’t seen as cheaters and burdens with less value that non-disabled people, we could organize a more accessible society where services were administered in a different way. A respectful and easier way with focus on integrity and autonomy.