Thoughts about divisions Part I: That four-letter ‘C’ word

There are a number of issues that divide the ASD community and as a parent of two children who are both on the spectrum my thoughts on three of these issues have been percolating in my brain for quite some time. I’ve decided to share my thoughts in three separate posts, one for each issue. This first post contains my reflections on that age-old question: if I could, would I ‘cure’ my sons’ autism?

The first thing I want to say is that I hate this question! It’s completely hypothetical – I might as well be thinking over whether I would choose to make the sky green if I could. I can’t do that and I can’t ‘cure’ my children either.

Not happening. Plus, it makes me kinda nauseous...

So, why the heck am I blogging about it then?! Well, it was one of the first questions I was asked when I became active on twitter and at that point I said I would outline my thoughts about it in a blog post. Now I am finally making good on that statement. I also wanted to share my thoughts in the hope that some of those who read them might realize that there is so much common ground we could all be focusing on instead of wasting time and energy sniping at each other about a hypothetical ‘cure’. Most importantly for me though, millions of dollars have been and are being spent on attempting to find the cause(s) and a possible ‘cure’ for autism. I seriously question whether that is the best way all of those millions of dollars could be spent. If so many of us weren’t committed to the idea of finding a cure perhaps some of that money could be redirected to providing services and support for people with ASD and their families; services and support that are desperately needed right now.

So, without further ado, let me provide a direct answer to the question:

Q: Would I ‘cure’ my sons’ autism?

A: No.

Before I explain my answer I’d like to try and pre-empt some possible responses. Whenever I’ve stated my views on this issue before, three reactions are very common and I’d like to explore those reactions before going further.

• Some people suggest that by stating that I wouldn’t choose to ‘cure’ my children I’m implicitly criticising parents who would.  I don’t believe that’s the case. I not only know, but like very much, a lot of people who have openly stated that if there were a pill that could cure their child of ASD then they would give their child that pill. I don’t live those parents’ lives and I don’t know their children so I would never presume to criticise how they feel. I know they love their kids just as much as I love mine. Parenting a special needs child is hard and in my view parents need to help each other as much as we can, not be hostile towards each other. I believe that we can be sympathetic and supportive of each other even if we disagree on certain things. Adults should be able to find the common ground we can occupy and work from there. We’re parents after all, not politicians.
• Another thing I have frequently heard is that only parents of children who are “high-functioning” autistics (HFA) would say that they didn’t want to ‘cure’ their children.  In all honesty I find that suggestion a tad presumptuous and here’s why:
• It makes assumptions about my children. For those that don’t know me or my children I want to make it clear – both my sons have been diagnosed with so-called ‘classic’ autism; neither of them is “high-functioning”.
• It gives the impression that, unlike  HFAs, individuals with severe autism need to be cured. I disagree and I’m going to outline why below.
• The parents of HFA children I know, particularly those parents of children struggling with puberty, would probably not agree that their kids are somehow ‘easier’ to parent.
• When expressing my opinion about not wanting to cure autism I often hear comments like “I’d love to chat with you about this but I have a diaper to change”. The implication I take from statements like these is that if I don’t find parenting my children an unrelentingly miserable experience then obviously I don’t have as hard a job as they do. In my view parenting shouldn’t be a pissing contest about who has it harder, but let’s be clear: I know parenting a special needs child is difficult. You know how I know that? Because I’m the single parent of two special needs children. Parenting children on the spectrum is not a life full of rainbows, lollipops and unicorns. We’re all exhausted, stressed, impoverished and worried about the future.

*Not an accurate depiction of life with autism*

So let’s get down to exploring why my answer to the cure question is “No”. My reaction when someone asked me for the first time if I would cure my children was – “huh?” (I know, so eloquent!) My children don’t have a disease, their brains are just wired differently to mine. Honestly, I have never viewed the boys’ autism through the paradigm of disease because to me it just doesn’t seem appropriate.

Not only does it seem inappropriate to me but its not what I see when I look at my children.  When people ask me about Owen I think of a boy with the sweetest smile and the best laugh I’ve ever heard. A kid who adores cheerios and makes the cutest little happy noises while he’s eating them. A boy who loves to hold hands and give kisses – which is his favourite way of asking you to read books with him. Someone who is happy as a clam with a book or his iPad and who is getting better every day at puzzles and threading beads. A little guy who is stubborn and focused, who halts at every stop sign while you read him the letters that he points to. A water baby who loves baths and is naturally comfortable in the pool. A Thomas the Tank Engine fan who loves all trains as well as buses, streetcars and the subway. I don’t describe Owen to people as a non-verbal self-injurious kid who still wears diapers and I don’t conceive of him as broken, in need of fixing or diseased.

Not diseased or broken...

The other reason I am uncomfortable with the ‘c’ word is that I believe it limits my children. Part of me has to spend a lot of my time focusing on their challenges and skill deficits – it’s the only way I can ensure that they get the support they need. But I refuse to see them through the “disease” or “broken” paradigm because I believe it saddles them with low expectations. For my kids to be happy and successful they need to feel that I see them as intelligent, that I realize the strengths they have and that their autism isn’t just a disability, it’s a source of great strength.

So how do we do this? How do we see our children as both disabled and gifted? How can we pull together these two seemingly contradictory realities? Is there a way for us to see autism in a positive light without appearing to diminish the hard work, difficulties and often pain that that can accompany an autism diagnosis? I am not autistic so clearly I can’t speak for those who are but I can frame these questions in a way that I can directly relate to. Instead of thinking of it as a disease, let’s look at ASD through a completely different but comparable paradigm – that of gender. I’m not suggesting that it’s a perfect parallel but for me it works because being a woman is often hard work, difficult and painful. For most of our history the majority of women have been voiceless and completely dependent on men. Even if we forget history, looking at the reality of life for women and girls right now shows us that:

• Girls are at a much greater risk of being aborted or of being victims of infanticide
• 50% of girls in the poorest countries in the world do not attend secondary school
• Of the one billion people worldwide living in extreme poverty, 70% are women and girls
• Women everywhere are at much greater risk of domestic violence and rape
• Women earn less than men for doing the same job

Imagine you’ve just given birth and you have the following conversation with  a friend:

Friend: “Cute baby, is it a boy or a girl?”

You: “Aww thanks! It’s a girl.”

Friend: “Oh… I’m so sorry, you know I believe that one day they will find a cure for that. Have you considered gender reassignment surgery? Its expensive but it would be so worth it. Having a girl must be such a burden for you.”

I’m fairly confident that most of us would find that reaction weird. Well, I find it just as weird when people ask me if I would choose to ‘cure’ Oliver or Owen when their autism is just as much a part of them as their gender. Like girls, they are clearly disadvantaged from the day they were born but there are things we can do as parents to overcome or mitigate those disadvantages. We encourage our daughters to be proud of who they are and instead of focusing on the statistical likelihood of them earning less or being victims of domestic violence, we ensure their access to a good education and build their self-esteem. Those of us who have children on the spectrum do the same when we fight for:

• Access to early intervention services and appropriate educational supports.
• Funding for evidence-based therapies.
• Access to services and equipment that enable all of our children to functionally communicate.
• Placement, training and support programs for our teenage and adult children.
• Convincing society and employers that a strong community and workforce is a neurodiverse one.

As parents we also need to access to:

• Funded respite programs.
• Services that help us plan for the future – prepare wills, do whatever we can to provide for our kids financially and help us develop a support network of parents and adults for us as well as a support network of peers for our kids.

All of our children and their families would benefit if these services were in place everywhere and properly funded. I would rather money was spent on the services above than in trying to find a ‘cure’ for autism. I wish that instead of being divided and fighting amongst ourselves about whether autism is a disease we were instead united and fighting for what we need to ensure our children realize their full potential.