Valerie Foley

What if?

In Diet, Medical, Perceptions on August 22, 2013 at 3:18 am

The platitudes and polarities in autism world make living here a notch more challenging than it needs to be.

I have enough perspective to accept that other people can and will do whatever they please with their version of autism. I’m certain it won’t be what I would do, but I’m also certain that they, as I, have a bunch to learn from the experiences and choices of others.

Hence the torture I put myself through on a daily basis – reading about autism on the internet.

I hit a wall this morning when the comedian called ‘God‘ on Facebook posted a syrupy sweet (disappointingly unfunny) hooray for autism post. You may have to ‘like’ God to view. Generally, I find him pretty funny. Today, I did not.

Today, I felt stabby.

My son is a lovely boy, no doubt. He’s gorgeous and loving and great at some stuff. Do I believe autism made him any of these things? No. No I do not. No more than epilepsy does, at least.

Do I think autism is a repository for ‘awesome talents’? No. Nor is auto-immune disease.

Do I think we are doing anyone any favours by perpetuating this ‘love your captor’ nonsense? Well, only if we are confident that the world will somehow find billions of dollars to support millions of people like my son, from birth through adulthood.

This week, autism has delivered my son and his peers the following (feel free to sing along, Twelve Days of Christmas style):
– a literal shit storm,
– a paper war designed to save a 10 year old from suicide,
– a psych lockdown for a 7 year old,
– a Webster pack of medication for a 15 year old that would put a cancer patient to shame and
– a grown up wheelchair for a 9 year old who no longer fits his therapeutic stroller.

The combination of these events, and God’s blue flaming made me think… there must be some better ways to think about autism.

Here’s a few random what ifs (I’m sure we could all add a pile if we had an Edward de Bono style strategic planning love-in).

 – What if the socially-awkward-genius autism and the can’t-control-your-adult-bowel autism are completely different things?
How would making that definition change the way we approach the diagnosis and treatment of one or the other? How would it serve the medical integrity of the condition? How much could we learn about the whole spectrum if one end wasn’t constantly white-anting the other?

 – What if we could get over the knee jerking and finger pointing around vaccination and actually had a good scientific (not epidemiological)  look at whether it is involved in autism.
No, it hasn’t happened/been proven/been disproven. No, they are not tested in combination. And No, a comparison of vaccinated Vs unvaccinated autism rates has never been done. What if we did those things? What might we learn? What might change if we knew more about the subtleties of the choices we are expected to make?

 – What if we asked GPs and paediatricians to consider actively educating themselves on the basis and treatment of the medical challenges autism brings?
Would it change the advice they gave parents? Would it change the nature of Early ‘Intervention’? Would it change the health outcomes of people with autism, who are among the most highly medicated and chronically ill in our communities?

– What if we all held hands and sang ‘Kumbaya‘?
Or another lovely but non denominational song, just in case someone is offended by that choice.

It couldn’t hurt, right.

Well, maybe listening to a worldwide chorus of Peter, Paul and Mary could be a little painful.

Let me think some more on that last one.

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