“We don’t do autism”

The author is being a bit prejudiced by saying her severe examples are somehow not acceptable while more high functioning ones are. Most people are unable to care for themselves. We depend on others to help provide food and water for us, accommodation, etc. Most of us won't stay alive if we're isolated from the support of other people we depend on. Some autistic people with more extreme cases not only can't provide their own food, but also can't put on their own clothes. That's just a tighter dependency but not distinctly bad.

I've heard similar arguments about Downs syndrome. Some people want to prevent it, but others say let's embrace it and recognize that the patients are still people who still get to experience life just like the rest of us. They might not be capable of some things we are, but hey, we're not capable of some things a superhuman AGI robot would be either. We wouldn't want to sterilize all humans just because intelligent robots appear and we feel our life has become relatively worthless.

The author is getting at one of the most important things that people don't seem to understand about autism research affecting everything from cause diagnosis to potential treatments: because of the variations, getting control groups together is virtually impossible.

My wife used to offer one of the programs that's been around for about 20 years (Sensory Learning Program - aka The Bolles Method) that people can pay for out of pocket but insurance won't cover. In some patients we saw no benefit at all. In others the results were near miraculous. For example, in the span of 2 weeks (the length of the program) one 4 year old child who had never spoken went from zero to 50 words. His mother was in tears.

The people who developed the program in Colorado had numerous pieces of coverage, Wired even did an 8 part story on them but couldn't ever get an autism study together. Eventually they did manage to get a complete study through regarding PTSD because you could get a control group together for PTSD and it showed statistically significant changes (part of the program affects the amygdala and there was some crossover benefit).

The whole thing was both fascinating and shocking. When I found out about the program at first, I was an absolute skeptic too. Looks completely hokey, but for SOME people it works.

The problem is that they haven't been able to find a way to identify the type of people who will benefit significantly...and that is because of the difficulties of getting together a control group. I know there is one doctor in Indiana trying to classify the symptom patterns across the spectrum. He's worked hard to reduce them down...to about 4,000. Prior to the categorization and reduction he was sitting at closer to 200,000.

And the problem is that the second that you know that and you start reading headlines about a study "disproving X" regarding autism you click the link and realize that 9/10 times it's just a rehashed study on general public diagnostics...because nobody can get together a friggin control group.

I've worked with a range of children, some of them have been marked with interesting psychological conditions.

This was in the states, and I don't really believe that it would have happened in the UK.

A child in my care was presented to me as a "manic depressive" Said child was 7[1]. I Accepted the diagnosis unconditionally, I looked forward to interacting with a intelligent, communicative, but somewhat inhibited, or slothlike child (depending on phase and drugs)

This child had none of these traits. He had poor language skills, the inability to share, bugged by external stimulus, Terrible social skills, poor empathy and a few other things.

In otherwords he was in my view was on the autistic spectrum. (Other people more experienced, who dealt with him agreed with me)

The reason why it was so concerning was the drugs he was put on to combat his "depression". He was on lithium and other such lucrative expensive drugs. The problem with lithium is that withdrawal has a 30% risk of suicide.

The problem for me was that anyone with a tiny bit of medical training, could see he wasn't manic. Because the Psychiatrist was being paid by the hour, and prescription, his diagnosis wasn't going to change.

[1]Manic depression in prepubecents, is vanishingly rare. http://www.rcpsych.ac.uk/healthadvice/parentsandyouthinfo/pa...

I agree this child was misdiagnosed and was receiving the wrong, dangerous, treatment.

But lithium is not expensive. Lithium is dirt cheap.

http://www.coventrywarksapc.nhs.uk/mf.ashx?ID=425e5245-157c-...

> Cost: For 800mg/day lithium carbonate or equivalent, at April 2015 dm+d prices, one year’s treatment costs

> Priadel® 400mg tablets £25

> Camcolit® 400mg tablets £31

> Priadel® liquid £273

You've proposed the reasonable step of using MRI to scan the brains of people with ASD diagnoses. That's already happening. We could probably do more of it. http://www.nhs.uk/news/2010/12December/Pages/new-brain-scan-...

http://autism-center.ucsd.edu/what-causes-autism/Pages/fmri....

Parent post is talking about scanning an individual. That's less useful. The second link I provide gives some reasoning: ASD is often suspected early. Many parents recognise somethings are different at about two years of age. You can't put an awake two year old in an MRI machine because you need the scanned person to stay still.