The Commodification of Autism

A study was published this week, stating that the average cost to families, in 2014-2015, of caring for an autistic child was over €28,000 in Ireland. With an additional €14,000 being spent by the government. Obviously, this included quite a wide range, from children who don’t cost much more than Neurotypical children, to ones who need quite a lot of specialised supports. A more useful figure, perhaps, is the median cost, which was just over €6,500.

Putting aside the glaring statistic that families are paying the brunt of the costs (75% of the total costs, as opposed to the 5% from a similar study in the UK), it is a rather shocking figure. The costs included things like home adaptations, and lost income (though only for those who actually worked, lost income from a parent giving up their job to become a full time career was not factored in).

Almost a fifth of the costs were “medical costs” and the bulk of these were assessments and “private therapeutic interventions”. Seeing state services such as occupational therapists and speech-and-language therapists are so hard to access, most parents seem to opt for private forms of these. And with prices as high as €100 an hour, it’s not hard to see how the costs can rack up. Unfortunately I suspect ABA practitioners may also be taking a chunk of this cash.

It really does seem that when Autism is involved, parents are seen as cash cows. They have been scared into thinking all these therapies and other expenses are vital for the wellbeing of their children. And that rather than wait on the scandalously long waiting lists (up to three years for some services), that they need to pay these rip-off prices.

Add to that all the “autism specific” items and accessories that no autistic child could possibly survive without. One such product I recently came across was an Autism Empathy Doll , costing £68!! It’s basically just a slightly creepy looking cloth doll. But pitch it at parents of autistic kids and it seems cost is no object.

And then there’s the cost of off-label medications such a melatonin. The liquid variety, for the many autistic kids who cannot swallow tablets, can cost hundreds of euro a month here, even though you can buy it over-the-counter in the US for a fraction of the cost. And it’s one of the few medications not subsidized by the government. I won’t even mention all the supplements and snake oil and quackery sold to “cure” autism. Those can end up costing a fortune.

Personally, we don’t spend anywhere near the numbers quoted in the study on anything “autism specific” for our children. Our chemist has, after a lot of searching, found us a cheapish generic melatonin. We have never opted for private therapies, and although we did get a private assessment for our daughter, the price was very reasonable. We bought a few sensory toys and things like fidget spinners. But not in “special needs” shops. We bought a weighted blanket off a lady in Waterford who makes them at home. I am very careful to avoid anything that sells itself as specifically “for autism”. They smack of marketing and exploitation.

What autistic children need is not expensive private services, products or supplements. What they need is something money can’t actually buy. It’s love, acceptance and respect for their basic human rights. And that’s something my children get daily, and I truly wish it for all autistic people, children and adults, worldwide.

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