Our choices define us.
So what happens when the responsibility of making choices, especially the right choices, becomes overwhelming? When choice is no longer empowering, but frightening and confusing?
Ever since our very first contact with speech therapy, we have used the language of choices with Rusty as a means of giving him confidence and ownership over situations. From those very early days with the Picture Exchange Cards System (PECS) where getting him to express a preference between two pictures was a colossal achievement to where we currently find ourselves – huge strides in communication but still having real difficulties with expressing anything other than statements of fact. Every single day, I come home from work and ask “Have you had a good day?” only to be met with a blank look. Alter the question to a choice: “School good or not good?” and there is a faint chance of eliciting a response. While the desire for him to make his own decisions is wholly well-intentioned, I have begun to wonder how much it actually contributes to his anxiety levels. After all, plenty of neurotypicals willingly (proudly?) describe themselves as indecisive, myself included – I dread being in a restaurant with an enormous menu and an incoming waiter 😱
But choices are everywhere, and making the right choice often requires us to judge how the consequences will affect others. Can you imagine a more stressful situation for our autistic friends? It is a sign of the times that behaviour at Rusty’s school is described, not as sensible or naughty, but rather as demonstrating good or not good choices. Having replicated this language at home, the effectiveness is obvious but also a little concerning. As I mentioned at length in my last post, Rusty has no lack of empathy and seeing the upset on his face on becoming aware that he is not making good choices is heartbreaking (but also necessary?!)
This is also probably the aspect of SEN parenting that many find the most stressful – the responsibility of acting in the best interests of your child alone, in spite of any ramifications and judgement. 4 years ago, when I realised that Rusty was displaying symptoms of autism, I had to choose whether to confront those suspicions or bury my head in the sand. Over the following months, I had a choice of whether to talk about his difficulties or keep things under wraps (think we all know how that turned out!)* and so many more decisions: How forceful to be with different services, which school to attend, whether to have more children… And then there is the (still) constant choice of how far to push him so that he is challenged but knowing when to stop. This evening over tea for instance, in my determination to extract some information about his day at school, my questions became so convoluted and choice-based “play with J today, yes or no?” that I completely lost him; no responses, no eye contact, no evidence that he could even hear my voice. This is not uncommon.
Any parent will do their level best to give their children everything they deserve and I do not really regret any of our actions to date, even if others think that we are taking advantage of our situation which, although sometimes hurtful, it is completely understandable; I would never have been able to sympathise with parents like me before all this started.
I have just read an interesting, slightly gut-wrenching article (ref: below) which explains some research showing that certain autistic traits could potentially be reduced or even eliminated through state-of -the-art gene editing techniques. Can you imagine the weight of responsibility brought by that choice – would you really choose to have the less desirable traits of autism edited out of humanity? I have said many times that life with Rusty, whilst being joyous and fun and infinitely surprising is exhausting and has moments of immense sadness. Knowing that, despite his almost unbelievable progress over the last year, the statistics and assessments still say that he is significantly delayed in almost every area of development, with no guarantee that he will ever really catch up properly. I love my boy the way he is but, would I choose a life for him which didn’t revolve around autism? Yes, a thousand times over.
Dumbledore knew that: “It is our choices, Harry, that show what we truly are, far more than our abilities.” Carry on choosing folks, but choose wisely.
*As a side note here, I have actually made a conscious choice to talk about Rusty less, because often an assertion that he is fine will generally suffice.