Autism & Self-Diagnosis

Autism is a developmental disability, not an identity.

It's kinda nuts that I have to actually say this.   

My friend Emma distilled our observations into this lovely, concise sentence, after we talked about the changing public perception of autism over the last decade or so.  When a bunch of autism mums get together, the chat ranges from shoes, to sexuality, to psychology..... usually flavoured with an undercurrent of autism.  It's always savagely interesting and massive fun when we meet.

We noticed that the face of autism has become more Elon Musk than Rain Man (and even Rain Man, annoyingly, had 'gifts').  Autism has become genius, rich, eccentric.  This is a far cry from the limiting, screaming, nappy-wearing autism that most of us are familiar with.

It used to be that the public believed that autistics possess some genius savant abilities that transcend their disabilities.  Of course, most don't.  Even if they have bizarre talents in some areas (for example my son has a jaw-dropping memory around eastern European languages), this doesn't stop him eating toilet roll and needing help to have a shower.  Speaking Albanian does not compensate for his utter lack of road safety, or his inability to prepare his own meals. 

Autism disables him.   

Now, in some quarters, the perception of autism seems to have mutated into being seen as a personality glitch, instead of a limiting developmental condition.

Within the special needs community, it seems like a sizeable (and pretty loud) section have watched a few episodes of Big Bang Theory and decided that they're card-carrying autistics. Incredibly, some people declare themselves to be on the spectrum, and expect to be taken seriously. Many become most offended when challenged.  

Here's the bottom line.

Self-diagnosis is not valid.

You can't do an online quiz and self-diagnose autism, anymore than I can feel a bit tired and decide I'm diabetic. 

You cannot adopt autism as a personality trait.

Dramas like The Good Doctor, and some dating shows, push the impression that autistic people are endearingly quirky, but that their social ineptness is overshadowed by their misunderstood genius.  They portray autism as delightfully, lovably, eccentric...... and who wouldn't want a bit of that?  The media seem to be turning autism into something desirable, into this season's new black.

This is a dreadful disservice to most autistic people who do not have the executive ability to live safely without intensive support.

We may suspect we're a bit spectrummy, at which point it would probably be prudent to ask for referral to a psychologist.  

Dr Google is not a psychologist. 

Autism is a neurological, developmental condition.  It can't be taken on and off like a raincoat.

Finian was diagnosed at the age of 3 after many months of assessments by a multidisciplinary team.  On the team were a psychologist, an occupational therapist, a speech therapist and a social worker.  They took into consideration data collected from us, his SNA, his teacher and the therapists he was seeing at the time.  They assessed him at home, in school and in the clinic.  Prior to this he saw a paediatrician who had the arduous job of ruling out all other possibilities, such as fragile X or cerebral palsy; to this end he had a brain mri and was screened for genetic and metabolic disorders.

It is not easy to diagnose autism.  

To feel a bit socially awkward, or do a five minute online test, and announce to the world that you're autistic does a huge injustice to those with a valid diagnosis.

Autism is not a cute, sexy must-have accessory.  It's not this season's dog in a handbag.  It needs to be respected as the carefully diagnosed condition it is and not be diminished into something as dilute as an identity trait.

not autism