I haven’t written about Autism for a while. To be honest, I felt a bit of a fraud, because my son has taken such great strides this year.
This is a post about understanding Autism, is it even possible and why are we, the neurotypical, so desperate to understand it? Even in saying my son has made great improvements, I’m revealing how little I understand.
‘Awareness around Autism has increased, but understanding hasn’t.’
These were the words of Adam Harris, speaking on a documentary called Autism and Me , which aired on RTE earlier this month. He is certainly right, and well-positioned to know as a young man with an Asperger’s diagnosis and founder of AsIAm.ie website , described as a one stop shop for the Autism community in Ireland.
Wait a moment, I hear you say,
‘Autism or Asperger’s? What’s the difference ?’
Asperger’s Syndrome is a kind of Autism, it’s on what’s now known as the Autism Spectrum. Asperger’s used to also be referred to as ‘high functioning’ autism.
So far, so confusing. No wonder people find it difficult to understand.
Why all the different names and why the change?
In 2013 the Diagnostic and Statistical Manual of Mental Disorders folded all of the subcategories of Autism into one umbrella diagnosis of Autism Spectrum Disorder. This ranges from people with ‘classic’ autism who might be non-verbal, to those who are able to communicate fully but might have social interaction issues – for example.
It’s really hard to talk about Autism Spectrum Disorder, I find myself considering my phrasing carefully, because everyone with a diagnosis will manifest it differently. That’s what makes ‘understanding autism’ so difficult. You might as well say you can understand life, or humans in general, such is the diversity.
If you’ve met one person with Autism, you’ve met one person with Autism.
My seven year old son was diagnosed with ‘mild to moderate’ Autism Spectrum Disorder, last summer. His clinician told us it was a diagnosis for what used to be known as Asperger’s. After a, quite frankly, tortuous few years getting the diagnosis was at once a relief, whilst still being a terrible shock.
Despite recognising the symptoms of Asperger’s in him, and having requested the ADOS test which diagnoses ASD, he did not fit my opinion of what a person with Autism looked like.
After the RTE show aired, there was much commentary about how impressive Adam Harris is. And he really is ( see his Ted Talk below); but it worries me that what impresses so many people about him is that he appears ‘normal’.
‘Sure, you’d never know there was anything wrong with him.’
That’s a worrying sentiment – I bristle at it , and yet I know I have thought the same myself. I know people think that when looking at my son.
I often feel like we need to provide evidence of the challenges we’ve faced at home, of the struggles he has at school in order to gain…to gain what? Sympathy? Understanding? Acceptance?
To be honest, even as the mother of a child with a diagnosis I don’t understand it. Here are some of the thoughts I’ve had since his diagnosis:
I sometimes forget he has it, because he appears ‘normal’.
I think because he has made so many improvements this year, that maybe he doesn’t really have it.
I think that when he gets angry and has a meltdown that he is being dramatic and over-reacting.
And that’s awful. If anyone else said those things to me I’d be upset and angry, thinking they didn’t understand Autism. And yet…
Understanding vs Acceptance
I feel I want to understand Autism, because I want to understand my son, and I want to support him. But maybe we are focussing on the wrong thing. Why are we – the neurotypical – so set on this idea of ‘understanding’? To be honest, my three year old daughter is as much an enigma to me as my son is – I don’t feel such a desperate need to understand her.
I wonder do we want to understand it so that we can prevent it?
One of the most stressful things associated with ASD is the meltdowns. This was something we saw only a glimpse of in the documentary and I can understand why. It’s an intimate moment and would be a violation of the children’s privacy to show them having a meltdown. Yet, for us at least, it was one of the key symptoms , as well as being the most difficult to manage.
One of the young people on the programme described his meltdowns occurring when he had ‘reached the point of no return’ , he described them as having to ‘run their course’. I recognised so much in this. When my son has meltdowns its almost as if they have to happen, you can tiptoe on the tightrope all you like in the hope of avoiding the triggers, but those feelings have to come out somewhere. Whilst I, as a witness of the meltdown, might feel emotionally worn-out, it would seem that my son was lighter after them.For him , they are cathartic.
You can’t stop an autistic meltdown. You can’t stop autism.
You can’t understand it, but you can accept it, and part of that acceptance is knowing it has many faces, which might not all reveal themselves to the outside world.