Sunday, 16 October 2016

"My child is autistic but has no sensory issues"

How a medical examination room looks to me

Over many years, I have talked with many parents about their offspring.  Some will say to me that their child is nothing like me.  Quite often, the statement, " child cannot talk, and has no sensory issues whatsoever".

Up to age 10, I still couldn't use language for communication.  I could repeat words or short phrases, but didn't know that people were couldn't guess what this was for.  It was a noise.

At age 20, I was still struggling to say things.  I disguised it by being the quiet one at the back, always.  If I had enough time to think, I could manage a short conversation.  But it would be such a struggle.  Mostly I hoped to find people who did all the talking.

Even now, I can go non-verbal. 70% of non-verbal autistic children eventually speak.  The rest communicate differently.  Differently is fine.  Many of us are partly-verbal.

Verbal ability is no longer part of the autism diagnosis in the most recent diagnostic criteria (DSM 5).  Not many people know that. A lack of speech is a speech/language condition, not autism.  We may have both things.

Let's go on to the sensory issues.

I was a very passive child.  Very compliant.  I would go into shopping centres.  I would wear what I was given.  I would go where I was sent.  I would do whatever the activity was, as best I could.  OK, I really couldn't do ballet, or Brownies groups, or Sunday School at church.  But mostly I could do things.  I'd get on buses.  I'd go to school.   To the outside world, it would look exactly like I had no sensory issues at all.  None. In fact, I didn't even get noticed as autistic.  I did not know that the world was supposed to be pain-free.

Other autistic professionals nationally say similar things.  For years, they could not recognise their own sensory issues. Some have hyposensitivity to sensory stuff, of course, and therefore absolutely love bright, loud places etc.  So much so that they can barely be removed from them. 

Each of the senses has its own scale of hyper/hypo-sensitivity. Smell, heat, cold, pressure, sight, hearing, balance, taste, texture, hunger, thirst, whether a loo is needed, whether something hurts.

Why do so many sensory processing differences go unnoticed?  Because if the world has always hurt, you don't know that it is not supposed to hurt.  If it has always been exhausting, you don't know that this isn't normal.  If someone is hyposensitive to internal pain, they may not realise they are even in pain.  I thought I was just rubbish at coping with it, compared to everyone else.  So some of us coped by being passive.  Some of us coped by being determined to just push through the pain and fear, every day.  I did the former.  In adult life, I do as much as I can of the latter. I wish I didn't have to.

If someone is able to confidently communicate that they have no unusual sensory issues,  that's good.  There are bound to be a few people who truly have no sensory processing differences.   The latest study on this, "Brief Report: DSM-5 Sensory Behaviours in Children With and Without an Autism Spectrum Disorder", (Dido Green et al, Journal of Autism and Developmental Disorders 2016) shows 92% of autistic people have sensory processing difficulties of some kind.  Huge numbers struggle with background noise.  Nearly 20% can only cope with bright artificial lighting by hiding their eyes from it.  35% struggle to eat because of sensory difficulties. 35% are in such pain/overload from basic daily grooming (hair brushing, showering etc) that they are fighting not to have it done.

Eventually, for many, ignoring pain takes a toll on us.  Eventually, we are so exhausted, so worn down, so damaged, that we can't cope any more.  We see rocketing levels of anxiety, depression, ill health.

For the parents that claim to know the inner world of their child, I'd say 'be careful what you think you know'.  No-one can ever confidently look at that list of senses, and declare for sure what someone else's sensory world is like. 

Autism is an invisible thing.  Others can't see it, and others don't know what our inner experience is like, at all.  For some, sensory issues are what prevent communication, and cause distress behaviours.    That system punishes the courageous and the quiet amongst us. We are expected to endure things.

Most parents truly want to do the best for their child.  I never doubt that.  My own best advice to parents is to not guess on behalf of their offspring.  It's fine just to say "I do not know".  Then, if there are mystery behaviours, perhaps find a good autistic professional who can decode sensory responses that may be missed by parents, teachers and non-autistic professionals.

Thank you for listening.