I find myself in agreement with diverse attitudes towards autism, because I’ve lived with autism’s diversities. I have spent years with a severely autistic child who was a danger to himself and myself; who faced a largely non-verbal future with a low chance of employment or independence. And now I am moving into years of having a moderately autistic child who is verbal, clearly quite intelligent, and constantly surpassing everyone’s expectations.
The diverse attitudes towards autism, respond to and reflect the diverse experiences of autism. Sometimes it really is a life-long horrendous disability that drains everyone involved. And sometimes it appears as if a gift; seemingly enhancing the individual and those close to them. In the same way that there are many autisms (or “pervasive developmental disorders” if you prefer), there are also many understandable and legitimate attitudes towards autism.
I am yet to reach the view that a single one of those attitudes accurately captures the entire range of autism, and I expect the changes to the category and types of autism in coming decades will reinforce the legitimacy of the diverse attitudes. I am still to get my head around how that diversity relates to and captures a situation like my son, who like so many others on the spectrum, has gradually progressed away from such scary severity (particularly over the past year).
It is tempting to forget and rewrite the horror of those early years (particularly from his ages of two to four); to instead focus exclusively on the amazing little almost-six-year-old I have blossoming now. To only look forward and be hopeful, and recast autism in the light of who he is now and who I hope he will become. But I fight that temptation for some very good reasons.
First off, what I went through – what my son went through – is what thousands of other families are still going through, and might go through until the day they die. Just because my son improved so much, doesn’t mean every autistic child does (neither, by the way, does it mean my own son will continue at such rates of improvement). If I turn my back on that reality, I feel that it would be turning my back on those families. They need to be acknowledged, understood, and helped. Telling them everything might turn out fine, doesn’t help them manage dangerous behaviours or teach their child to talk or to be social. Focusing only on those who have come through (or never had) the worst of it, shifts the focus from those most in need.
If autism help was a zero-sum game – if there was only so much help to go around – I would always put the majority of it into helping the most severely affected. I don’t personally see autism help (funding, research, attention, services) as a zero-sum game, but I know many do, and so I understand why they get so upset when their harsh realities are painted over by stories that make autism seem benign or mere difference; because it detracts from and undercuts those who most need that help.
So that’s the first reason that I won’t forget the horror; because I think it does a disservice to those still living it.
The second reason I will not forget, is because I never want to go through it again. I am scared of having another child because the child might be autistic, and I barely made it through the first autistic child. Even with everything I’ve learnt – with everything I now know about autism and how to handle an autistic child – I personally wouldn’t do it again. It’s like a dark hole I’ve almost crawled out of, and someone asking whether I’d like to hop back in again, not knowing how deep it might be the next time, or whether I’d ever get out again. We took that risk with our second child, and I’m glad we did. Raising him has been a world of smiles and laughter and relative ease, and his existence has enhanced the life of my first-born too (and a child with very mild autism might have been much the same). I would raise many children like my second son if I had such guarantees. But there are no guarantees, and statistics say we’re at a fairly high risk of having another autistic child, of unknown severity of course. I will not be throwing that dice again.
That, by the way, does not mean I would abort a child if there was some magical way to tell if it was going to be autistic. It also does not mean that I would un-wish the existence of my son, or any other autistic individual. Anyone who jumps to such conclusions is making an unwarranted and far too simplistic leap. I am saying only what I am saying; that I personally don’t wish to risk having another autistic child, not that I wouldn’t lovingly raise one if another autistic child came into my life.
(Anyone who claims that my views equate to aborting or eradicating all autistic people, is being alarmist, ridiculous and distorting my words and concerns; I know that sadly won’t stop people making such claims though. Many people choose to only have one child because they found the first too hard to care for, that doesn’t mean they hate all children nor wish they hadn’t had one at all. Many people don’t want to have any more daughters / sons because of bad experiences with the first lot, that doesn’t make them sexist either.)
So that is my second reason for not forgetting the horror; because I need to remember that I couldn’t face going through that all again. The fact that I don’t think I could cope with it, isn’t just about me either; I am the mother in this family – my mental and physical health impacts on the whole family, including my two current children.
The third and final reason I’m sharing for why I won’t forget, is that I need to remember how far my son has come. Some days, his autism makes him so very hard to manage. It is mentally and physically exhausting, and can leave him unhappy and confused as he tries to navigate this world. Some days I worry so much for his future – his education, relationships, employment – that it’s like a dark cloud tinting everything I see and think about. But I remind myself not to forget how bad it once was because (a) it could have been so much worse than it is right now if he hadn’t improved, and (b) if he continues to improve at even a fraction of the rate he has been, his future might turn out to be a good one.
I try not to get too caught up in that hope, because I need to always respond to the child and the challenges that child has at this point in time; and hope can be distracting, frustrating and cruel. I just take each day and do my best with it; remembering how far we’ve come already does help raise my spirits and put my son’s current challenges in perspective.
So that’s my three reasons why I won’t forget the horror, and why I won’t soften that word “horror” either. It’s important for people to know what families like mine went through. To realise that autism is hard going and those families and individuals need real help and not just pretty words. Though I feel like I walk between two autism worlds – in terms of experiences, hopes and attitudes – I will always keep a careful and understanding eye on the way autism can impact so negatively on so many lives; even as I look to the bright future that would be all the brighter with more acceptance and accommodation of autism. I do not see a contradiction there, I just see the diverse realities of living with autism.