“Passing” in the autism world, is a word typically used to discuss the experience of an autistic person being expected or being successful in the endeavour to present themself as “normal” (or as “neurotypical” if you prefer). It is a mindful and frequently draining task that can leave the autistic person worse off than if they’d just “been themselves.” (I’ll leave the wonderful Rachel Cohen-Rottenberg to expand on this important point in her thought-provoking post “On Passing, Overcompensating, and Disability.”)
Yet “passing” was the word that came immediately to mind in relation to my clearly-autistic son during a recent conversation. I was meeting up with a family friend who happens to be a judge on special needs education cases in the USA. She knew my son was autistic, but when she met him she said to me “he must be high-functioning.”
I was somewhat stunned; I don’t think of my son as a high-functioning autistic: When he was diagnosed he was really quite severe. After years of therapy and interventions he has come an amazingly long way in his development. He no longer self-harms, he’s no longer violent to others and property, he can now speak in sentences and was finally toilet trained at four and a half. He attends a special needs school, but it has recently been decided to trial him in some mainstream classes because he is doing so well in a couple of topics, and his behaviour has advanced so beautifully.
But because of his severe beginnings, and because I’m so used to working so hard with him for so many years, I’ve been a little blinded perhaps to how he now appears to others. I know his social and communication challenges will be more obvious when he enters dreaded puberty – when these things begin to “matter more” (to his peers and to general public expectations; people tend to be more “forgiving” with young children’s oddities) – but as of this point in his life, it appears that to some people he can “pass” as high-functioning.
I don’t just use the word “passing” because of how I personally think (and have thought) of him; I also mean that he works extra hard to appear the way that he does to appear apparently “high-functioning”. He works hard to control his anxieties and to express himself meaningfully. He actively works on his social skills too; watching others and trying out what they do and then using our guidance as to whether it is appropriate or not. What might look like high-functioning autism in any other person (for example, someone who is simply being themself), is actually a product of amazing levels of hard work for my son.
I suppose for some people this is simply an improvement in his autism, and yes that’s obviously a large part of what is going on here. But I think to simply refer to it as an “improvement” (or lessening of severity of his autism) is to discount and not realise how much work he still puts in daily, hourly, into what others see when they look at and talk to him.
I want to be very clear that this “passing” (or more precisely, passing plus improvement) is not a result of us forcing our son to be someone he is not. He is a much happier person now than when he was severely autistic, he communicates his own mind, and is an incredibly loving (and loved) little boy. All we’ve done is equipped him to express his own voice, and enabled him to find more independence in his world (such as dressing, feeding, and toileting himself, rather than the stationary and repetitive behaviours that once sat in the way of even the simplest development. We have not “wiped out” his stims before someone accuses me of that – he still flaps and happy-dances, expressing himself as comes naturally – but we have “limited” them so they no longer consume such extraordinary amounts of his time and attention.)
That’s the problem with the word “passing” in this rhetoric in some ways; it incorporates an inherently negative view of what the person becomes (“other”) when to a certain extent what has happened is objective improvements in the person’s abilities and life skills. Perhaps there is (or needs to be) a better word for conveying that hard and unseen work is going on with the individual – work the rest of us typically don’t engage in or need to engage in – that needs to be known to really appreciate the achievements and get a deeper understanding of the individual. Perhaps what we need is both the word “passing” (to capture the harsh reality many autistics live) alongside a more celebratory word for the effort autistic’s make in the face of very real and under-acknowledged challenges.
So yes, I guess at some level, in a certain way, my son is now “passing” for a high-functioning autistic; because of how much work he puts into what he currently appears to be. But that word doesn’t truly capture the wonderful achievement and amazing work that also deserve celebration and recognition. I’m glad some people can now think of him as “high-functioning” but it still matters to me that they realise what it took to get here and how far we still have to go, in the positive sense of opening doors that once looked forever closed to him. No matter what words you use to convey these realities, the underlying truth remains the same: My son has amazed me, my son is amazing.