“He doesn’t seem too bad.”
How many times have I heard those words? Usually they are spoken by strangers who have met my son for the first time and learnt that he is autistic. Usually they are based on their first impression of this bright eyed, apparently “normal” child. Usually they are quite far wide of the mark in their comment.
The National Autistic Society recently commented on an “invisible generation” of elderly people with autism. The needs of older people on the spectrum were, they said, often misunderstood or unrecognised.
As the father of an autistic six-year-old, I would argue that the invisibility of autism begins much, much earlier. Before my own son was diagnosed, autism registered on my radar very little. I guess that when you’re not looking for something, you don’t find it. And even when it is there, and when a person with autism comes into your life, recognising the extent to which it shapes and determines that person’s life is often not apparent.
I knew people on the spectrum and I knew the basics of the condition, alongside some of the myths and preconceptions. But mostly I was rather ignorant of autism, which is perhaps forgivable given that most other people are, too. Where it becomes less forgivable is when you consider that I work as a teacher in a secondary school.
Now it is other people who do not “see” my son’s disability. They will comment on his clear speech and his ability to read as being evidence that he’s “not too bad”. They will cite his intelligence as a clear indicator of “normality” (and in the process completely misinterpret what autism actually is). They will marvel at his intensely focussed interest on cars or maps or computers as signs of brilliance (which they are) rather than as signs of the autistic mind (which they are).
Autism is like this: it can have some very clear physical indicators and it can be obvious from a person’s speech, or lack of it. But often the signs are not immediately obvious.
One friend of mine seemed almost dismissive of the suggestion that my son might have any sort of difficulty. I’m sad to say that one grandparent can also be counted among those who do not see this invisible disability.
What they don’t see in their cursory glances, hasty assumptions and amateur diagnoses is a boy who struggles to cope with the world around him and his place in it every single day. A boy who is unable to mix and socialise with his peers. A boy, aged six, with no friends his own age. A boy whose sensory needs drive him to lick and gnaw the school railings, bite and chew his clothes (but eat no more than three food types). A boy who often feels so overwhelmed by his surroundings that a meltdown is his only strategy for defence. A boy with little understanding of hierarchies, social rules and accepted modes of behaviour. A boy whose language skills are the result of careful cognitive processing and almost no intuitive understanding. A boy who cannot read your facial expressions, body language or tone (or, indeed, even look you in the eye).
My son’s autism might not be immediately apparent but spend a little time with him and the extent to which it defines his life becomes increasingly clear.
My family encounters autism blindness every day, whether it be at work, school, in the park or among family and friends.
One recent memorable incident occurred when I enrolled my son on a fitness course. In an act of bravery/stupidity/blind optimism I had signed both my boys up for what was billed as a “Fitness Frenzy” at a local leisure centre. This would be a first for my son: difficulties with social interaction usually mean that group activities are best avoided. But his older brother- not on the autistic spectrum- deserved some fun.
I had fully prepared my son for the activity, offered him advice on how to behave and act and assured him that it would be fun if he did what they told him. I knew it would go in one ear and out of the other, but I said it all nonetheless. I also assured him I would be close by if he needed me. In fact, I promised, I would stay in the sports hall in case he needed me.
Now I just needed to speak to the fitness instructor.
I felt awkward as the other parents dropped off their kids and left. I hung around, hovering close to the fitness instructor and waiting to catch her eye. When I did get a chance to speak to her I forgot to clear my throat before speaking. As a result, when I did speak, my voice caught a little, like I was choking and stumbling on my words. I wasn’t, but it sounded like I was. Unfortunately, the words were, “My son is on the autistic (choke) spectrum.”
What an idiot. Here I was confidently handing my boy over to participate in a regular kid’s activity and I made it sound like I was about to have a breakdown before their very eyes.
To make matters worse, my son came bounding over, followed by big brother. He was full of articulate chatter and didn’t look like he had any needs whatsoever, apart from the need to get started immediately.
Big brother, on the other hand, tripped as he arrived, prompting the instructor to ask, “Is it this one?”
“No, he’s normal” I replied, and instantly regretted it. Why, five years down the line, do I still struggle to find the right words to describe my boys?
The instructor looked at the two boys and I had that familiar moment where I feel like my judgement is being questioned. The moment when, for a short period, my son stops being autistic and makes me look like a complete liar, or fantasist. I half expected her to say, “Are you sure he’s autistic?”
This happens quite often when people first meet B. In many situations there is no requirement to tell people anything about my son, but on this occasion it was obviously necessary.
I got that look that I’ve seen many times. Those familiar words were surely on the tip of her tongue. Perhaps it would be easier for people if he came over dribbling and rambling incomprehensibly. Perhaps that would make it easier to believe.
The trouble is, as much as I am happy that my boy is able to come across so able, I also know that before long, his differences and difficulties will begin to surface and become very obvious indeed, particularly in circumstances such as these. I felt the need to explain that he sometimes struggles to participate, that he has full time one to one support at school, that he might react negatively to some of the activities.
Rather unhelpfully, my son continued to make me look like a liar and demonstrated no signs of being unable to participate. Perhaps I was being over-cautious after all.
And then they asked the children to line up, and things started to unravel. My son literally stood out from the crowd, opting to form his own line outside of the rest. One day this uniqueness and single-mindlessness will serve my boy well, I have no doubt.
But on this occasion I found myself willing him to get back in line.
The instructor introduced herself, and was about to continue when she was loudly interrupted. “That’s my mum’s name!” yelled my son. “The same!”
“That’s lovely” said the instructor, and pointed at her assistant. “And this is Holly, who will…”
“Holly!” he yelled, again. “Holly is in my class at school! It’s the same again!”
“Thank you” she said, and asked my son his name. He replied with his full name, age and primary school. The other children looked on amused at this loud, interrupting boy in their group. The facade had been dropped. My son’s difficulties in understanding social situations and appropriate behaviour were slowly emerging. I was glad I had warned them.
These interruptions continued through the initial meet and greet period. B even started to throw in a few very random interjections. My personal favourite was related to his new special interest: film classification. B has spent a lot of time recently reading the guidance labels on the back of DVDs. As the instructor was explaining what was going to happen, my son cut her short with the disrupting question “Did you know that Skyfall has mild innuendo?” His pronunciation was perfect. His timing and context less so.
Eventually the group was able to start its activities. I watched as the adults quickly (and successfully) adapted to my son’s needs. I had stayed for about 15 minutes but felt a little uncomfortable and wanted to leave. The best thing about school, I have realised, is that I don’t have to be there, watching my son. Feeling brave, I eventually headed for the car park to sit and wait in the car. This felt like a huge indulgence on my part, like I was skiving off my parental duties and catching a few moments to myself. My guilt was assuaged by the fact that every other bloody parent had pissed off and left the kids. In fact, they were probably in the pub having a great time, congratulating themselves for dropping the kids off at a very inexpensive crèche that also wears your child out. Besides, I felt really awkward and a little bit creepy sitting in the sports hall watching the group do its activities. It must also have looked like I didn’t trust them to be able to take care of my boys.
So I sat in my car reading the paper instead. I tried to limit the number of times I popped my head in to see how things were going.
With each visit, B seemed to be participating less well. By the mid-point, I found him mid-meltdown over the snack I had left for him to eat (“Apples? Not apples!”) but he was quickly placated when I produced a packet of crisps instead.
By the end, he had pretty much given up on the activities and was roaming the hall muttering to himself, happy in his own little world. I still find it difficult to see him do this; I want him to participate. The instructors had all but given up on him. Clearly he was not able to access these activities.
Clearly, their initial assessments of him were wide of the mark. As if to underline the fact, he had a mini-meltdown as we tried to leave. I realised that, much like his beloved DVDs, my son needs a guidance label (“Contains moments of mild peril, inappropriate behaviour and violence”).
I reminded myself that he had participated for much of the session and as such the visit had been a success. But the initial reluctance to embrace my son’s needs was a stark reminder of the difficulties he faces in life.
Rather worryingly, this blindness towards the needs of those with autism seems to have spread to the organisations charged with supporting them. In the local authority in which I work (and in which my child is taught) there have been drastic cuts to the support young people on the spectrum receive, whether it be their one to one support in the classroom, speech and language therapy or other specialist provision.
My son is a victim of such cuts. And if schools and local authorities are unable to recognise these needs, then how can we expect wider society to understand, support, embrace and celebrate unique children (and adults) like my son?
The NAS is right to highlight the fact that autism is forever and not just a condition that affects the young. But let’s not forget that the ease with which autism in the elderly is disregarded could also be applied to youngsters on the spectrum too.
Most of all, we need to move away from notions of how “bad” autism is at all.
My son is a beautiful, outstanding child who happens to be defined to a great extent by his autism. People need to recognise that autism is not something to be feared or pitied or ignored. Perhaps then they will be less inclined to turn a blind eye.
B’s Dad is the author of the blog and e-book ‘Life with an Autistic Son’.