Valerie Foley

Dear people who study autism…

In Research on March 29, 2013 at 6:47 am

It seems like you are floundering a little.

I’ve been looking at the range of studies about autism that get published each year, and the thing I notice the most is how few of them focus on… well, anything useful.

By useful, I mean meaningful, practical or even actionable. By useful, I mean things that could change the game, rather than reinforce the current state where head scratching and head shaking are about the most positive signs of forward movement we have. To be honest, a lot of the studies I do see (and I see a lot) are beyond illogical.

We’ve known autism has been around for quite a while now. We’ve been doing this long enough to have a fair idea of the range of useful interventions and therapies. We’ve known about (and somehow ignored) the need for specific and meaningful services for adults with autism for a long time.

Quite frankly, you’ve been studying these things for a long time and you haven’t had much meaningful impact. I can say this because nothing in my life as a parent of a child with autism and a range of supporting medical conditions has changed/shifted/exploded in response to a study. Not intervention choices, not school based services, not medical advice, not diagnostic practices. Nothing, in almost 10 years.

Also, you guys seem to argue a lot about the diagnosis rate. It seems obvious to me. You get a diagnosis, your doctor/government/school/parent knows about it. Ergo, you get counted. I’m not sure what the mystery surrounding numbers is, but it seems to consume a lot of your energy. Is it wrong for me to suspect that if you decided on one reliable method of counting and just did it, you could? I’m thinking maybe the argy-bargy is a smoke screen, and I’m appreciating it less and less every day.

We’ve seen a bunch of suggestions about causes, and a bunch of reasons why none of those suggestions can account for everything. This back and forth process might make you feel better, but it does nothing for us out here. Genetics, environment, vaccines, diet, deficiencies, lifestyle choices… all seem like plausible influences on the autism rate. It seems like we’ve seen a lot of talk, but absolutely no action.

Over the last decade, nothing much has been done about prevention, either. No advice, no concrete suggestions beyond a couple of vague ‘perhaps you should take folic acid’ type of things (handy that folic acid is a recommendation in most countries and has been for a while…). It amazes me, being one of the parents swept up in this that you’ve still got nothing. I can’t imagine why not.

The latest figures show 1 in 50 in the USA, 1 in 62 in Australia, 1 in 100 in the UK. Big, fast increases over the last decade. Something’s going on. What is it?

As a parent, I have a bunch of ideas, but you guys are the ones with your fingers on the decision making buttons. So, let me hit you with a few suggestions.

– buckle down and look at environmental issues and autism diagnosis rates. Do it in a few places. Look at a few different issues (chemical use, pesticides, GMOs, food quality, pollution). Compare those results. Recommend some change.

– start a longitudinal study of pre-pregnant women in a few locations. Follow them for ten years. See what happens in their offspring. Make some recommendations about what we should be doing offspring-making wise.

– suck it up and do an accurate vaccinated vs unvaccinated autism numbers study. Do it carefully, break it down, make some changes.

– while I’m inviting trolls, study what happens when unvaccinated people have their own children. Tell us what you think that might mean for the general population.

– compare immune function in autistic people and non-autistic people. Then protect the people who need protecting with good solid advice about medicines and lifestyle.

– get a bunch of families to clean up their lifestyle, and leave a bunch of families doing what they want. Compare autism rates in both sets of families over time. By a bunch, I mean 100 000s of thousands across a number of countries. Tell us what we could change in our own lives.

– see what happens if you optimise gut function in a large scale sample of children over a long period of time. Give us some recommendations, instead of leaving us to work it out for ourselves.

– take every single person who reports an adverse reaction to a vaccination, and study their immune system. Find the similarities. Work out how to identify a vulnerable immune system and give them an alternate vaccination schedule. See what happens then.

– do a worldwide study of children with autism and… GI issues, seizures, mito, metabolic disorders. There’s a lot of them, all willing. Just ask.

– study the Vitamin D levels of people with autism, their parents and their siblings. Study what happens when they change their levels.

– do a world wide survey of autism parents. Ask anything you want. We’re a talkative bunch. We have lots of medical files.

These are just a few suggestions, and I’m sure that every autism parent I know has a bunch of much more impressive ideas. We have these suggestions, mostly because we need answers. We are not content accepting that our individual kids are acceptable collateral damage for what? A random role of the mental dice? A statistical anomaly? A surge in skill among doctors?

It’s not OK. If it was your kid, it wouldn’t be OK. It is your world, and it can’t be OK.

I’m sending you this set of suggestions because I want to you know we are not fooled by your tactics. We can see what you are doing. We are angry, and with very good reason. We are focused and smart and we know how to read a study.

We’d like to be able to read one that actually meant something significant to us.

Help our children. Prevent more children from being diagnosed. Treat those who have been diagnosed with medical respect.

If it was possible to write that gesture where I point to my eyes and then to you, and then back to my eyes, then back to you… I would.

You can pump out all the smoke and mirrors you like, but we’re not going away.

Cheers,

Valerie

  1. Excellent Piece, truth hurts. The same ‘researchers’ have been around for decades here in UK each trotting out their tired worn-out excuses and explanations. Meanwhile rates of diagnosis goes up (as for prevalence, they are too afraid to tackle that one). We cannot be afraid to ask the questions or find the answers.

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