The forgotten physical impacts of autism (aka, my son the Superman)

Image by Phil Scoville via Flickr

The public perception of autism is that it is only about the mind or brain, there seems to be little or no appreciation of the impact autism has on the body. My son is one of the “estimated 60%–80% of autistic people have motor signs that include poor muscle tone, poor motor planning, and toe walking.”

Because I learnt about autism primarily through him, I thought all autistic children suffered the same physical problems that he did. When I first took him to a preschool playgroup for autistic children, I was surprised and confused when most of the other children so easily and happily went to play on the playground equipment. They could climb, and slide and swing, while my son just stayed on the flattest surface possible and lined up trucks.

The first question that arises then is whether he was simply not doing those activities because he didn’t want to. Was it only because of his sensory issues (and in a weaker sense, his preferences) that he didn’t do these things – ie, because he chose not to? But I’d be told by his developmental pediatrician that he had poor muscle tone related to his autism. Indeed, his diagnosis of “autism” entitled him to access a physiotherapist and occupational therapist, so there was professional recognition of the physical impact of autism – it’s not all just “in his mind”.

The next question that naturally arises then is whether those physical limitations were themselves a result of him choosing not to do activities that would have otherwise built up the requisite muscle tone and co-ordination. For example, were his anxieties and sensory issues which stopped him from wanting to climb a ladder, the reason that he couldn’t climb a ladder? That too though, seems too simplistic as an explanation for what my son physically can and cannot do, which becomes clearer when you consider the developmental delay aspect of autism.

My son has general and wide-spread developmental delay as part of (not separate to) his autism. He was significantly late to sit, to walk, to jump. Not because those activities – sitting, walking, jumping – “scared” him on a sensory level. He did not choose to do those activities late, anymore than a “normal” child chooses to sit at an early age.

Of course it helps an autistic child’s physical development if you can overcome the anxieties and sensory issues: The more my son climbs and walks, the more those muscles and co-ordination improve. However, this in no way means that forcing an autistic child to do activities they don’t want to do, will magically solve the physical impact of autism. It takes very careful, thoughtful and steady progress to get an autistic child to try new activities; it takes a long time to overcome the barriers to “normal” activities and action. Whenever we’ve made the mistake of trying to force our son to hurry up and do what the other children his age were physically accomplishing, we would only succeed in creating whole new anxieties, meltdowns, and him withdrawing further into his autistic world. One step forward, two steps back.

There have also been plenty of examples in my son’s life of where he fully wanted to do an activity, trying to use the right muscles and do the right actions, over and over again, and still not being able to do the activity – activities that younger children seemingly master effortlessly and quickly. Again, the physical impact of autism is clearly more complicated than an issue of choice.

It’s not surprising that the physical impacts of autism can build on themselves too. For example, my son is a toe walker – he can walk flat on his feet but prefers not to. This is a classic behaviour in autistic children. We worked hard on getting him to stop it. Getting him into shoes can help, but not because it stops him going on his toes (it doesn’t), it just makes it harder for him to go on his toes. Walking on your toes all the time affects muscle development (not surprisingly), and can also affects the joints, so this is not just a question of aesthetics. Add to this behaviour the fact that his “happy dance” has him in a wide unusual stance rocking from one side to the other a lot, and you have a recipe for further problems.

He has ended up with severely rolled-in ankles. At their worst they looked deformed, and I wondered how he managed to stand on such intensely angled ankles. He now wears orthotics in his shoes, and is meant to wear those shoes at least eight hours everyday, to try to correct his stance.

The physical impact of autism on my son is really quite wide-ranging. From the most simple self-care actions of getting dressed, drinking from a cup, using utensils, and toileting, to the more carefree play that he still struggles with in the playground – climbing, balancing, swinging, sliding, hanging. In some ways the impact on him is quite typical for an autistic child – such as the toe walking. In other ways they reflect the individuality of how autism has manifested in him; reflecting his own sensory issues and anxieties.

It is easy to see how bad parenting gets blamed when uninformed people observe an autistic child. They see my son not able to feed himself or dress himself, and think it’s because I haven’t taught him these skills. Or they see him not climbing a ladder and sliding down a slide, and think it’s because I haven’t been taking him out to playgrounds or have been restraining him from new experiences. In the same vein that they have seen his abnormal social and communication skills, and accuse me of not talking to him enough, and not socializing him enough.

Over the years I have had these hurtful charges lain at my feet, and have had to defend myself in the face of such cruel ignorance. I have worked months and years – at times without success – to teach my son, things which came naturally in the course of development to other people’s children. I now watch my own 14 month old son pick up skills that my five year-old still hasn’t mastered. I do not deserve praise for my youngest son’s achievements in these areas, anymore than I deserve damnation for what my five year-old hasn’t achieved yet.

Some people also dismiss my son as mentally deficient because of the impact autism has had on his physical capabilities. That is to say, as a consideration independent of his problems with communication and socializing. They see what he cannot do, and judge him accordingly. They don’t see what he can do – and I don’t just mean the mental feats such as his astounding memory, and his eye for details that pass most of us by. They don’t see how damn hard he works to achieve what comes so naturally to others. My son is a Superman, for the effort he puts into his life and to learn how to function in this world. It is him who deserves praise for what he can do, not me who deserves criticism for what he can’t do; such is the confusion and irony.

I openly admit that I still have a heck of a lot to learn about the physical impact of autism – the whys, the hows, the what-nows. Whatever the explanation for the physical impact, it is there, for the majority of autistic people. Awareness of this aspect would help reduce the unjustified judgements that families like mine face, in a life that is hard enough already. Next time you see a struggling autistic child, trying to do the simplest of actions, remind yourself that there’s a good chance you’re staring not at a lazy child of bad parents, but rather, at a Superman.