As someone who puts himself in the public eye for a cause, especially on the internet, I’m aware that this makes me a target for criticism. Mostly it’s to do with my opinion on MMR not causing autism (because it doesn’t), my belief that modern, science-based medicine is better than snake oil and superstition (because it is better), and my insistence that people with autism can and do make good parents (because we can and do – although not all of us). These criticisms I can easily brush aside.
Not all criticisms can or should be dismissed out of hand, however. There’s a pernicious idea among the younger generations (and Taylor Swift) that any criticism is trolling, and those who do it are simply ‘haters’ and bullies, which is a great way of avoiding personal responsibility and adopting the mantle of victimhood, but isn’t an enlightened way of viewing people whose opinions differ from your own. So I tend to give my critics the benefit of the doubt – that the criticism was sincerely meant, even though I might disagree with it – and I consider whether there is any merit to it, since this is how we grow as people.
My latest criticism has got me thinking, for despite being worded rather rudely and making some outlandish assumptions, it asks a pertinent question: by what right do I presume to speak for others on the autism spectrum?
I have to first point out that, while I have been told I am an ‘ambassador’ for the autism community, speaking for those who can’t speak for themselves, I have never actually claimed this myself. I recognise, however, that by putting myself out there as a speaker, author and blogger, my words and behaviours reflect upon people’s perceptions of autism, and this is not something that I take lightly. Indeed, I put a great deal of effort into getting it right, especially since I’m currently in a position to influence opinion.
On Wednesday, for example, at an autism conference in Belgium, I spoke to two-hundred delegates about what it’s like to live with autism and how I manage to cope. Also on the bill at Inservice Autisme 2017, in the small village of Oostmalle outside Antwerp, were two other Brits with autism: internationally-renowned opera singer Sophia Grech, and bestselling author of Freaks, Geeks and Asperger’s Syndrome Luke Jackson. So, what right do I have to speak at such an event?
My answer is: I have every right. I talk about what affects me and other people I have met with autism, what has helped me to cope and what has helped others. I point out some of the issues you might face living on the autism spectrum and how these might be overcome. As you don’t cease to be an individual when you’re diagnosed, I am up front about the fact that the things I say will apply to some people more than others, and while some coping strategies might work, they are certainly not for everyone. The important thing is to make sense of your own experience and find out what works for you.
I don’t think there’s anything particularly offensive about that.
I have also been told I shouldn’t speak for others with autism because I have a wife and children, a book and a blog, and I have worked in the past – that my achievement of various life goals makes me ‘atypical’ (i.e. too successful) and thus invalidates my experiences of autism. Inherent in this accusation is a very negative view of people on the autism spectrum, as though to qualify as autistic you must necessarily be unfulfilled, downtrodden and miserable, and this is an opinion that simply does not ring true for me.
I have met hundreds of people on the autism spectrum, and I continue to be amazed by their diversity. In just four months of public speaking I’ve spoken to many Aspies with wives and children, jobs and homes. After every speech I have given, people on the spectrum have come up to me and told me I could have been describing their lives and that what I said really resonated with them. To say that I am ‘atypical’ and cannot relate to others on the spectrum is therefore simply wrong.
It has also been assumed that, because I take a positive, hopeful view of the prospects for those of us on the spectrum, I shouldn’t speak for those who don’t have it as ‘easy’ as me, or the same ‘advantages’, as though I lead a blessed like free of strife and woe. I don’t think anything could be further from the truth. I could offer to show all my self-harming scars from years of struggle, but instead I’ll say what it took to attend the autism conference to show how ‘easy’ it was.
As a stay-at-home dad/unemployed guy with a two-year-old, a seven-week-old and an autistic wife who can’t be left alone with the kids for more than a couple of hours, attending the conference was tough. First, my wife was very abusive when she first found out about it in April because she was scared of me going away and her not being able to cope; despite organising for people to sit with her while I was away, and for her to stay at her mum’s, she remained hostile about it right up until the time I left, telling me I would likely be killed by terrorists in Belgium and that I didn’t love my family, etc., etc. This is what she does when she is feeling vulnerable – she goes on the attack.
As I tried and failed to book a flight to Belgium (I found it too difficult, for while I am capable of some things, I’m incapable of many others), I sought help from my dad, who agreed to drive me. He wanted to take the Channel Tunnel, but as I’ve been on it before and found it claustrophobic, I asked for us to take the ferry because I was worried I might have a panic attack.
On the day of the journey I was up at 3am with the baby and didn’t return to sleep. I left home at seven and it took more than twelve hours of travel to reach Oostmalle. Upon arrival, I was terrified, had an upset stomach, and struggled to keep my anxieties in check.
Entering the conference centre, I was confronted by 200 Dutch people eating dinner, drinking in the bar, and milling about in a noisy, dark environment. The organisers sought me out and directed me to the ‘English Corner’ where Sophia Grech sat with Luke Jackson, two titans of the autism community. So I dug deep, swallowed down my fears, and introduced myself.
After an hour of trying to hear people over the noise and hiding behind a bottle of Coke, my father drove me to the hotel. I rang home to check on things, to find my wife sobbing, the baby screaming, and my toddler crying down the phone, ‘Mummy very sad! Mummy very sad!’ Not easy.
After my dad went to sleep, I worked on my speech, as this was the first opportunity I’d had to be in a clear headspace – or as clear as it could be.
In the morning, I was really panicking. I had to take pills for my upset stomach, struggled to breathe, and wasn’t sure if I’d be able to keep my heart inside my ribcage. As we arrived I puffed out my cheeks, blew out my breath, and flapped my hands like a baby bird trying to take flight. And then I forced it all inwards and painted on my mask, my happy, confident face, and entered the fray.
The speech went well, very well, in fact. I really felt as though I made a difference, and the feedback afterwards showed that it went down a treat. For the next few hours I hung around with Luke and Sophia, and despite my fears, they were two of the coolest, nicest, most down-to-earth people you could hope to meet, with stories and experiences and ideas very similar to my own. In fact, to find myself in such agreement with others was both a rarity and a validation of my own views on autism.
The next day, exhausted and headachy and socially hungover, dwelling on every word I’d said in my speech and worrying if I’d done justice to the wider world of autism, I got up at six to leave at seven for the twelve hour journey home, whereupon I immediately resumed my parenting and caring roles.
I mention this to show that while things might be hard, those of us with autism can achieve amazing things if we have the courage and drive to confront our problems and refuse to let them hold us back. And if people still think I don’t understand what it is to struggle, that I don’t find things difficult enough to be a ‘proper’ Aspie, and that my life is too easy to be relatable, then it says more about them, I think, than it does me.
So why do I do it, if I find it so hard? I do it because I can do it, and I genuinely want to help. My life has been so hard I want to make things easier for others, and if sharing my experiences, opinions and coping strategies can make an autistic person’s life just a little bit easier, that’s what I’m going to do, regardless of whether critics think I’m entitled to or not.
I’ll leave you with the comments of a girl in my village who also has autism. She has struggled all her life but is now doing voluntary work and trying to make something of herself. She’s quite open about the fact that she isn’t articulate enough to describe what it’s like living on the spectrum and doesn’t have the confidence to speak in front of people anyway. Here is what she wrote on my Facebook page a few weeks ago:
‘You’re amazing and you’re doing a great job for everyone else who has autism like you and me and everyone else. I’m really proud of you.’
And the other day she wrote:
‘I and everyone else with autism is going to look up to you. You change people’s lives. Congratulations.’
Am I entitled to speak for others on the autism spectrum? I’ll leave you to decide.