Earlier this week, Chris Bonnello wrote an excellent blog about why he believes saying “I hate autism” is wrong. He approached a difficult subject in a fair, balanced and constructive way, and with some trepidation.
He was right to be nervous. This is an emotive and neuralgic issue which can quickly drive autistic adults and autistic parents into separate camps. Sticking his head above the parapet could easily have resulted in it being liberated from his shoulders, but fortunately the response to date has been very positive.
I haven’t found myself in agreement with absolutely everything Chris puts up on his site (and I doubt he’d agree with every word I’ve ever written either) but I agree with an awful lot of it and I have real respect for him. Perhaps what I respect most of all is his capacity for self-reflection; he genuinely listens to and makes and effort to understand the perspectives of others. This is leadership within the autistic community done right.
Because Chris demonstrated real empathy for parents, I thought it only right that, as a parent, I should come out in support of his observations on this issue and show him some solidarity. Before I do so, though, full disclosure: one night, in the early stages of our autism journey, I found myself saying “I hate autism”.
Let me explain why.
I remember that night clearly. It was 5am. I had been watching the same episode of Barney in a loop since 1am in an effort to get my son back to sleep. It finally worked. I deposited him in his cot and found myself wondering whether I should go to bed and try to get maybe an hour’s sleep before he woke up again or get into the car in my PJs and slippers and just drive… Instead, I went to the computer and emailed “I hate autism” to another mum who I figured was most probably awake as well.
This was shortly after my son had been diagnosed. I was raw. I was confused by the contradictory advice being pushed on me from everyone I came into contact with, worrying I was somehow to blame for this….thing happening to my precious son, terrified what the future might hold, and desperate to fix it (without a clue as to how I might do that). I hadn’t slept properly since he was born and was dangerously sleep-deprived. I felt hopelessly inadequate. This little person I loved more than I had even known it was possible to love another human being was depending on me and I had no idea how I was going to cope with this ‘new normal’ and give him the support he deserved.
I had recently found some online parent groups, in which other parents were inevitably as scared and confused as me and talked about autism like it was the enemy – “Today autism didn’t win in our house” – particularly in the US, where being an ‘Autism Warrior Mom’ was very much in vogue. There was a lot of grief, frustration at the lack of support – or even decent information – available, and a lot of (often misdirected) anger. We clung to each other like air crash survivors clinging to floating remnants of fuselage.
All of this was layered, of course, upon the foundations laid by a diagnostic process involving multiple trips to hospitals and health centres, where people spoke quietly to you in medical terminology and laid a comforting hand on your shoulder. Everything I saw and heard seemed to be saying to me something terrible is happening to your child.
Fast forward eight years, and I am in a very different place. I am much more confident as a parent – helped by my own autism diagnosis – and I know a lot more about autism than I did back then. I know that self-care is not self-indulgence: it is an absolute necessity. I have a much better support network. I am proud to be in the same ‘club’ as my wonderful son. I celebrate the fact that he is perfect at being the person he was born to be.
I now see autism as a different way of being human, not a set of deficits. I have come to understand that, as Chris Bonnello says, it’s not autism I hate, it’s the difficulties thrown in the way of autistic and/or disabled people.
Being an autistic parent to an autistic child can feel a bit like playing a game of Twister: whichever way you turn, you’re liable to step on someone’s toes or get an elbow in your face.
Autistic activists can sometimes be a bit too quick to get their snark on when a parent appears and to make adverse assumptions about them when they use unfortunate terminology. I tend to avoid saying too much about just how challenging parenting can be for fear of being accused of being a ‘martyr parent’. I see a lot of parent-bashing going on, with little attempt to differentiate between those parents who are new to autism and as yet uninformed (as I was in the past) and those who are wilfully ignorant.
Sadly, there are some parents whose actions are at best negligent – the curists and the proponents of harmful interventions – but they are very much in the minority. Most parents are scared, insecure, unsupported and exhausted.
Parents, on the other hand, can be overly dismissive of autistic adults based solely on the premise that if an adult isn’t exactly like their child, they couldn’t possibly understand their child’s challenges.
Actually, they’re partly right. As autistic adults, we say that we are the real experts on autism by virtue of our lived experience. By the same logic, you can’t claim to be an expert on parenting if you’re not a parent. And no one autistic can claim to represent or understand all autistic experience. There is a noticeable underrepresentation within autism activism of adults with higher support needs and/or learning disabilities (and I am not laying blame at anyone’s door here, since I don’t see any evidence to suggest this group of autistics is being deliberately excluded). It can, therefore, appear to parents as though only certain types of voices and perceptions are dominating the overall narrative.
Parents, in turn, don’t always listen to autistic adults as much as they should and thereby miss out on some very valuable insights. Parenting an autistic child requires highly honed problem-solving skills and constant curiosity in order to be able to decode new behaviours and figure out what your child is telling you they need.
Too often, parents compare their autistic child to their own idea of how a child of a particular age and gender should be, without taking any account of the fact that their child has a completely different way of perceiving the world and making sense of it.
Most of the time I just try to stay as still as possible with a foot in both camps, trying not to topple over…
Let me be clear about one thing: I have never, ever hated my child. I never could. My job as his mother was, is and will always be to love him unconditionally.
No, I hated the idea that something had ‘happened’ to my son that could make life harder for him. Working in the justice sector, I know too much about what happens to vulnerable people, how dangerous and manipulative people will deliberately target them since they’re easy prey, and how much of the violence and abuse perpetrated against them either goes unreported or is too hard to prove to an evidential standard.
That is why I tend to give parents and carers at an early stage in their journey a by-ball. Going through a grief cycle when you find out your child has additional needs does not, of itself, mean you are a ‘martyr parent’. It means you are a human being. The ‘martyr’ part comes in if you stubbornly refuse to make any effort to move on from your grief, when you make it all about you as a parent, when you talk about your child disrespectfully, when you invest your energy in seeking sympathy and attention for yourself rather than learning how to help and support your child.
Parents need to listen more to autistic adults and autistic activists need to avoid tarring all parents with the same brush. We will learn more from each other when there’s less accusing and more understanding. Less ‘othering’ will mean better mothering.
As for my own confession, if I end up being prosecuted for disability hate speak I will insist that the afore-mentioned episode of Barney is adduced as key evidence for the defence and make the judge and jury watch it in a loop for four hours straight.
I’m pretty sure, after that, no court in the land would convict me.
Photo: Rex Features