Autistic mortality

In case you missed it, the BBC recently ran a story on a Swedish study that shows that autistic people live, on average, decades shorter lives than non-autistics. This effect is consistent between autism with and without intellectual disabilities, and in all sexes.

They talk about neurological differences such as epilepsy contributing to increased autistic mortality, particularly in those with intellectual disabilities. They also cover the increased risk of depression and suicide.

Heart disease is the biggest risk to autistic people without intellectual disability. The scientists behind this study blame diet, exercise, sleep patterns and stress for this. We are at high risk for increased stress and reduced coping ability, which have a strong effect in the risk of heart disease.

Communication with medical professionals is given a brief mention, as is the frequent comorbidity or misdiagnosis of mental illness.

They close with the opinion that we need to start working on all of these aspects, and this is a wake-up call to stop looking at autism as a disorder which affects primarily children.

Apart from the functioning labels and the pathology paradigm, this was a good interview that I hope will lead to more research and improvement in the medical care of autistic people.

Then I read the comments. While there are few comments on the Facebook post, they already show a disturbing cross-section of the stigma that is all too familiar to us.

Because they learn easily on how to love and respect others and god took them in to heaven….and we normal people must still continue our lives learning how to respect and love one another in order for us to enter heaven

I think I just puked a little. Where do I start? With the assumption that people with developmental disabilities are all innocent little angels who don’t have the capacity for the full range of human emotions, drives and, yes,insensitivity and malice? We’re human beings, not heavenly spirits.

Or perhaps I should address the use of the word “normal”, the usual pathologising and othering language that suggests there is some kind of norm that we can reasonably expect people fit into. Neurodiversity is a biological fact. There is no normal.

Of course parents of autistic children pop in to congratulate the commenter:

Such inspiring and beautiful words for parents with two kids with Autism. Thank you

I was glad to see a comment from an autistic individual:

I personally object to the idea that we are magical fairy babies. All we want is to be seen as normal human beings like the rest of you. Whether we’re being cast as indigo children or diseased monsters, the effect is the same: we are discriminated against.

This was not the most worrying thread. Some delightful person commented “Quite rightly so”, to which some autistic commenters voiced their disapproval. I don’t think I need to add any commentary on that. If you can’t see the problem with believing it is a good thing that autistic people live shorter lives, I wonder if perhaps you need to find a less advanced blog and start reading up on basic human rights.

By far, the most troubling comment was about autistic diet, which has since been deleted. Sadly, I don’t have a screen grab. The comment was to the effect that the commenter’s observation of autistic people showed that we gravitate towards junk food.

It seems like there is an element of victim blaming here. We die young because of our restrictive diets. We die young because we like chips and ice cream, because we tend to be vegetarians in meat-eating families.

We know why our diets are often restricted. Aversions to certain tastes, textured and smells that we cannot overcome in the way non-autistics can “make do” with a meal they don’t like. The need for predictability, the same recipe, the same sauce. The need for a trusted, repeatable meal experience drives us towards fast food and ready meals, as does our limited energy reserves.

What we need isn’t education on healthy eating, it’s availability of good quality food that requires little preparation, and in a variety that gives people with sensory aversions a choice.

We need ready meals to be made healthier, not taxed to the point where we can’t afford them. We need society to take our side.

But that’s what we’ve been saying all along. Don’t fix us, fix the world.

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