A response to Tom Clements in theGuardian

This is a response to this opinion piece

https://www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe

I once posted beneath a Facebook article on vaccination that I had had measles, and still grown up autistic (no MMR in my childhood), and I knew which of the two was worse. The week of fever, pain, nausea and delirium caused by measles was far worse than anything my autism had ever caused me.  I then went out for a walk, and on returning to Facebook after lunch, found a whole string of comments following mine. One in particular stuck with me.  A complete stranger wanted to know if I had control of my bowel movements. She also suggested that, as I could communicate, in writing at least, I must only be mildly autistic. Did I have no sympathy for those poor “vaccine-damaged” individuals who were left incontinent and non-verbal? Others had chipped in during my absence, and pointed out how rude she was – and that she had missed my point that my autism couldn’t have been caused by the MMR vaccine if I hadn’t received it.

However, since then, I’ve noticed that whenever an autistic person speaks up to say, “being autistic isn’t all bad”, the spectre of the non-verbal, incontinent autistic who “lashes out” in frustration will be waved around as an example of the purest form of horror autism can cause.

“You high-functioning autistics can’t speak for my child when you don’t know what it’s like to be non-verbal, have to wear a nappy (diaper), and get violent with frustration,” people will say.  But here’s the point no-one seems to have noticed so far.  I do know what it’s like to sit in my own effluent, furious at my inability to ask for the help I need.  We all do.  There has never been a person born with speech and bladder/bowel control! We all screamed and cried as babies needing a nappy change, every single one of us.

I have become fascinated by the trope of the “non-verbal, incontinent autistic”, because of the way it’s wheeled out as an emblem of shame, degradation, and a life that it’s implied isn’t worth living. I’m starting to think that we all have unresolved trauma from our own experiences as helpless babies in soiled nappies, consumed by overwhelming feelings.  Most people don’t have conscious memories this, because most of us learn to communicate and at least partly control our bladders and bowels before we formed permanent memories.  But the emotion remains, therefore, if we don’t analyse it, we can assume an older child or adult in a nappy feels as helpless as a baby. There is also the shame attached to soiling oneself – probably because it’s associated with infanthood, severe illness, or the end of life. That’s another thing.  Many of us have witnessed loved ones whose final years are as high-dependency as their earliest. It only took a few years for dementia to transform my mother from a university lecturer into an incontinent, non-verbal, cognitively damaged person. Have you ever shat* yourself as an adult? I have, although I managed the situation with the minimum of embarrassment, fortunately. There are very few backpackers who don’t have a story about loss of bowel control due to unfamiliar bacteria in food or water. There was also the time I got norovirus, and had to change my knickers twice in one night. Why am I telling you this?  To make the point that lacking bowel control doesn’t rob a person of their humanity, mental capacity, or human rights. Much better to remove the shame, and provide comfortable adult nappies (and convenient, environmentally friendly disposal points) where needed.

The same goes for inability to communicate by speech.

When visiting my grandmother (who also died speechless and in a nappy due to dementia) in a nursing home, I remember greeting another resident. This woman’s response was a series of (to me) unintelligible sounds.  15-year-old me was terrified. Ableism had led me to believe that a person who couldn’t speak ‘properly’ was unable to think, and therefore irrational, and therefore dangerous. I know better now. I also know now that there are many forms of communication which don’t require speaking. Sign language is one, and text-based communication options are plentiful these days. I sometimes lose the power of speech when I’m exhausted – at which point some well-meaning soul will bombard me with questions asking me if I’m okay, would I like a glass of water? and getting very annoyed with my failure (inability) to respond.  If someone goes quiet, being made to speak is usually the last thing they need.  Being forced to use the remaining scraps of energy to answer someone’s question is likely to make me very angry, but I don’t lash out even if I feel like it as I’m aware of the embarrassment which will follow.  This wasn’t always the case.

A friend once told me that, as a child,  they had invited TV character Mr Blobby to their 7th birthday party.  Mr Blobby had sent a letter thanking my friend for the invitation, but explaining that he wouldn’t be able to make it. I queried how Mr Blobby was able to do this, when all his character ever said was, “Blobby, blobby, blobby.”

“It was a speech impediment,” my friend replied with mock indignation.  “Didn’t mean he couldn’t communicate.”

So there we go.  If a 6-year-old could appreciate that speech isn’t the limit of communication, why can’t adults?

One final point. People who parade “seriously disabled autistics” to convince the world of the horror of autism always ignore the fact that there are people with learning disabilities, communication difficulties and incontinence who are not autistic. Let’s make sure we’re fulfilling their needs too, rather than using them to make a point.

*shat – past tense of shit, considered far less offensive for some odd reason.

 

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