Autism & Diagnosis

When Finian was 3, he was diagnosed with Autism as described by the Diagnostic and Statistical Manual of Mental Disorders (DSM).   

The diagnosis wasn't a big surprise; he had been lining up his toys and eating firelighters since he could move.  He was (initially) non-verbal.  Intense sensory issues caused him to disintegrate into hysterical meltdowns.  He rarely slept.  Pica meant that he had to be perpetually supervised to stop him eating dirt, paper and plastic.  When he took to his feet, bolting became a preoccupying hazard. I had been pushing for assessment for 2 years.  By the time we out-ruled a slew of genetic, metabolic and developmental disorders, Autism was the obvious last card on the table.  The diagnosis arrived with sad inevitability rather than appalling shock.

I did what most parents do, and became a diligent student of all things neurodivergent.  There wasn't a book left unread, or a therapy left unconsidered, including a fierce study of the clinical criteria necessary to diagnose Autism.  I devoured the DSM.  It was populated with deficits (in communication and social interactions), functional limitations, and categories of restrictive, repetitive behaviours.  These were measured on score charts by well-intentioned professionals.  In slow-motion horror movie style, I realised that accessing the services my son required depended on him being reduced to a set of deficits.

But, search as I might, I could not find my lovely, spontaneous, unguarded boy in the language of insufficiency used by the DSM.  

I'm pragmatic about Finian's needs; I recognise that he has requirements that are reluctantly met by an ableist world.  I understand that we need to identify the areas that autistic people struggle with to attempt to help them.  Measuring the 'deficiencies' of autistic people is an expedient way to plan services.  It is all too clear, however, that service planning consistently fails our kids, so the price of prudently labelling our kids as 'less-than' and 'other' is a false economy.  

Sometimes I indulge in a dangerous fantasy. Imagine living in a world where the lens was reversed, and we focussed on changing the wrongness of our society rather than the wrongness of our children.  I know it's not going to be realised in my lifetime, or probably Finian's, but I'm cursed with optimism that, in time, the world will learn to value difference.