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:

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.

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21 Comments on “Thoughts about divisions Part I: That four-letter ‘C’ word”

  1. trishasmom November 10, 2011 at 11:11 pm #

    I totally agree with you.

    • OMum22 November 10, 2011 at 11:13 pm #

      Thanks Carol. I think this applies to Down Syndrome too!

  2. Jodi Click November 11, 2011 at 12:25 am #

    This has to be one of the best blog posts EVER!!! VERY well-said, Deanne!!! Awesome, awesome, awesome!! I love the gender comparison – I totally get it! 🙂

    • OMum22 November 11, 2011 at 12:30 am #

      Thank you so much Jodi. The gender comparison was what really made everything fall into place for me so I’m really glad to see it worked for you too. 🙂

  3. Teriann Morgan November 11, 2011 at 3:16 am #

    Deanne I absolutely love this post…
    I have a close friend with 11 year old, twin girls with classic autism (they are non-verbal) We have had this discussion many times. Especially the comparison between my Aspergers (HF) boys and her girls. She remarked to me one day that although she wished every day her girls were able to communicate through speech,she can see how difficult it makes life for my boys (and me) . Her beautiful girls can read and write and are very artistic and the difference I have noticed is they are, usually, very content. My boys are in constant battle with themselves and us. Is it because they are high functioning we expect more then we should? Do we push them too much? There are so many similarities between these four children but their communication skills mean the expectations are hugely different.
    …And cure my boys? NEVER! Why is enough material for my own blog post. One to add to the list 🙂
    And I agree,the gender comparison was inspired! Brilliant post Deanne.

    • OMum22 November 23, 2011 at 8:44 pm #

      Thanks Teriann. Sorry I haven’t replied until now, just catching up. I love that you can have such a frank discussion with your friend. That to me is what our community should be about – sharing our stories, learning from each other, seeing the other’s perspective. I can’t wait to read your blog about this. 🙂

  4. Rose November 11, 2011 at 6:18 am #

    Thank you for this one. I don’t believe in a cure but I do believe that my little guy is a wonderful human being just the way he is. I think that he deserves and will have a place in the world where he can contribute. He’s got a long way to go, but he’s full of charm and has a beautiful sense of humor and those personal attributes will help him get there.

    • OMum22 November 23, 2011 at 8:46 pm #

      Thanks Rose. It sounds like your little guy has a very supportive parent and that will goes a long way to helping him fulfil his potential. 🙂

  5. Tom Lewis (@K_Dad) November 11, 2011 at 2:16 pm #

    A good question to ask and think about. Here’s a brief first response:

    If I could eliminate from my son’s life whatever it is that causes him to become overly aggressive, hit people, kick people, etc. then I would do that. If I could eliminate from my son’s life whatever causes him to feel extremely anxious much of the time, I would do that. If I could eliminate the things that cause him extreme distress, I would do that too.

    Does that constitute wanting a “cure” for his autism? I don’t know. How would I determine if he had been “cured” in the first place? No more tantrums? My NT kids have tantrums. Perfect behavior? Hardly.

    What if eliminating whatever causes his aggression would also get rid of his delightful sense of humor, his inventive word play, his top-notch math skills, his sweet and caring demeanor? Would I do it then? No, I don’t think so … no, definitely not.

    It’s a bit difficult for me to imagine my son “cured” of his autism. What would he be like? Much like his NT sisters? Dunno. For example, I don’t worry (much!) about my girls when they go off on a bike ride, but I do worry (a lot!) about my boy. What would have to be different for me NOT to worry about him? Better self-control, less aggression, yes. Anything else?

    I don’t even know what it would mean for the autism to be gone. I’d certainly like to see certain behaviors gone. (So would he, I hasten to add.) Would that mean the autism would be gone as well?

    • sherripizza November 12, 2011 at 8:24 am #

      Tom, I too would like eliminated what causes my son aggression (hitting, kicking, screaming) and anxiety, but the difference here is also that I would like eliminated what causes my son to be extremely speech delayed, I would like my son to speak, I would like my son to write and draw (he can only scribble and he’s almost 6 years old), I would like my son to be able to button a button and zipper a zipper, I would like my son to stop rocking back & forth and muttering to himself and making odd noises all the time, I would like my son to interact with others, and be able to play with other children. Based on your reply, it may be a fair assumption that your son can indeed speak, converse, write, draw, button a button. In my case, my son cannot, and that is due to his autism, thus I do wish there were a cure for autism. My son’s sense of humor and love of music are not because of his autism, those would have been there regardless given my (and his father’s, my ex’s) love of music. But his extreme speech delay, inability to converse, interact, play with others, and inability to write or draw — those are caused by autism, and hence I wish with all my heart that there were a cure, but yes, I know there is no cure… And my son’s life, and mine, are difficult.

      • OMum22 November 23, 2011 at 8:55 pm #

        Sherri, Tom, thank you for your thoughtful comments. This is why I’m so thankful for twitter – it’s resulted in me meeting some really great people. I would like to say that I also hope that my sons will speak, write and draw. I hope that Oliver learns how to manage his aggression effectively. I hope that my children develop friendships with peers.

        I think the hopes we have for our children makes us.. well, parents. If my children were neurotypical, I’d still have hopes for them they would just be different ones. In my case, accepting who they are doesn’t mean I don’t work hard to help them develop skills which will likely cause them to change and evolve.

        Sherri’s comment that her son’s love of music and humour aren’t related to his autism made me think a lot. It does seem to me that the challenges our kids face make us wish the autism was gone but that all the positive attributes they have are seen as just a part of their make up. I’m not sure I can separate my children from their autistic selves. I can’t imagine a neurotypical Oliver. I’m going to explore this some more in Part II.

        Thanks again for contributing to this discussion. It means a lot to me that we can share our views in a constructive way.

  6. CGregoryRun November 11, 2011 at 7:42 pm #

    Well said! Now I have to go think, since I’ve never given the matter any thought…also? Nice use of a unicorn. 🙂

    • OMum22 November 23, 2011 at 8:56 pm #

      Trust you to focus on the thing that looks like a pony 😉

  7. V Lee Dorrell November 11, 2011 at 9:36 pm #

    Great job Deanne!

    • OMum22 November 23, 2011 at 8:56 pm #

      Cheers V! 🙂

  8. Gramie November 12, 2011 at 9:11 am #

    I like this 🙂

    • OMum22 November 23, 2011 at 8:57 pm #

      I’m glad you like it Gramie 🙂 Thanks for reading!

  9. Gingerheaddad November 14, 2011 at 9:05 am #

    Great post, Deanne. I don’t hear the question often but I do so a lot of folks write about how they have cured or are curing their kids. Even many diseases that we think can be cured are often just treatments. Many years ago I worked with a diabetes organization and they faced an uphill battle because many people believe insulin to be a cure. When I hear an announcement about new government funding for research, I wish just once it was researching how to deliver ibi more efficiently and not into causes, because my son is too important to receive a cure that would have no guarantees of efficacy or retaining who he is.

  10. Gingerheaddad November 14, 2011 at 3:17 pm #

    And because it’s connected to what divides parents of autistic kids, I want to recommend Stuart Duncan’s latest post: http://www.stuartduncan.name/autism/paint-your-own-autism-picture/

    • OMum22 November 23, 2011 at 8:57 pm #

      Thanks for sharing Stuart’s post Jim – I love it.

  11. AspieSide November 24, 2011 at 6:55 am #

    This is such a wonderful post! I have written before that I work on my son’s behaviors because yes if he is hitting someone then no one sees how awesome and smart he is. That isn’t “curing” him. We are at a point now where he has mostly (knock on wood) worked through the aggression & hitting. Like someone else said this is part of parenting any kid. You don’t change the kid but you need to help guide them to appropriate behaviors and being a better individual.

    I also have met wonderful people on Twitter including Auties and Aspies. I recently wrote a post about how Loving and Accepting our kids is so important. Some have not been accepted by their parents and I understand their point that when someone speaks of curing it can be hurtful to them. http://aspieside.com/2011/11/18/love-and-accept-your-kids/ I also recently wrote about how we all need to appreciate & understand where others are coming from & just cheer each other on as best we can. I can understand how someone can make negative comments but I can also understand how saying those comments can hurt someone on the spectrum, including my son. Who I am teaching to embrace his uniqueness but also recognize his limitations so he can advocate for himself (like saying no, can’t go to a pep rally when there is a sub).

    I don’t think Autism is all unicorns and sunshine but I am not sure any parenting is. My son is 14 and the challenges are many some times. But then other times it really awesome. He still likes to hide under the blankets from me and giggles when I start saying “Where’s ____” and when I say I can’t find him & kind of sit on where he is, saying the bed is lumpy. I don’t know if another 14 y.o. would do that. And I don’t care. I think my son is awesome just the way he is. But behaviors and issues come up that need to be addressed sometimes.

    Sorry for such a lengthy comment. I really did like your post!!

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