Wednesday, October 15, 2008

'My Child Has Driven Me To Poverty'

It's Blog Action Day today, and the topic is poverty. Well, I could write about the obvious stuff, like how many disabled people are poor, but I won't. Instead, I'm going to write about how autism curebies talk about poverty.
In the Autism Every Day video, a parent talks about going deeper and deeper into debt, paying for treatments for her autistic child. She jokes about 'sending him to Harvard over and over again'.
And this is treated as if it is the child's fault - or, technically, their autism's fault. When plenty of parents have autistic kids and don't spend way more than they can afford on treatment. I can't imagine how someone could drive themselves into poverty to treat a developmental disability. I wonder where their priorities lie, that getting their child to act normal matters more to them than having a home or food on the table.
Another source of poverty for parents of autistics is that their child's needs can disrupt their work. Autistic kids are more likely to get sent home from school for misbehavior. Many of us need more supervision than most kids our age. Babysitters are harder to find - plenty of people who are willing and capable babysitters for a 2-year-old in diapers can't or won't look after a 10 year old in diapers. (And babysitters can also be less willing/able to look after mildly autistic kids, more because they get into/worry about getting into conflict with the child than because of the child physical care needs.) Autistic kids often have trouble with transitions, such as getting ready in the morning, and may have more trouble actually getting ready as well.
Most of these problems are not due directly to autism. They are due to problems with the school system, problems with availability of services, problems of discrimination from babysitters, bosses and others, or other societal problems. Yet that's not usually where the blame gets put, or the recommendations for changes. Rather, like spending exorbitant amounts on therapies, the blame for job disruption is usually placed on autism.
Jobs can also be disrupted by the curebie/autism-tragedy mentality. Parents are stressed out and upset, and don't work as well because of that. Therapies take time & energy - if you're running a home-based ABA program 40 hours a week, that's a lot of work, especially if you are doing many of those hours yourself. There is a roller-coaster of emotions, from despair when your child has a particularly 'autistic moment', to hope when you hear grand promises from a therapy program, to elation when your child shows the slightest sign of 'progress', to anger when someone tries to deny your child a 'Cadillac'* of services, etc etc, that distracts from work. Being a curebie parent can be exhausting.
But the impact of your perspective on autism is never seen or acknowledged. It's so taken for granted that it is literally invisible. It's the 'natural way' to view autism, the way everyone views it. The existence of another viewpoint doesn't even occur to many parents. So yet again, autism takes the blame.

* There's an analogy floating around that says the school system is required by law to provide a basic car (eg a Ford) for the child, but they aren't required to provide a fancy car like a Cadillac.

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Blogger wrongshoes said...

Very interesting perspective.

6:59 PM  
Blogger Maya M said...

Today's society is fitted to non-disabled, "easy" children allowing both of their parents to work full time. Even so, few families can afford more than two children, often only one. If a child's disability "drives" the mother to become a full-time caregiver, then the family's income is automatically reduced by nearly 50%, even if therapies themselves don't cost a penny. I think society should support parents more, especially parents of disabled children. It is a shame that people in the 21st century have to choose between being good parents and, say, eating yellow cheese.

3:23 PM  
Blogger Gonzo said...

Ha, my thoughts exactly!!
You forgot to mention all the quackery, that costs a fortune, like chelation, and the other biomed crap that's offered on the AoA blog.
They put their kids on a gfcf diet without even checking for celiac's disease, or lactose intolerance first, then they complain how expensive it is, as if autism is to blame for their own stupidity.

7:50 PM  

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