Autism, Acceptance And Love

My friend Shannon Des Roches Rosa posted a great piece regarding understanding acceptance on Thinking Person’s Guide to Autism the other day. I wanted to write a comment, but had to think about what she’d written and then wrote a long, epic length, rambling comment, so lengthy that when I went to submit it I was informed I’d “timed out” and lost the whole thing.  But it got me thinking…

Whenever I think of acceptance the “serenity prayer” comes to mind – “…grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”  This prayer was what I repeated to myself each and every day for years after we were given Emma’s diagnosis.  “Courage to change the things I can” was what I clung to as I doggedly pursued treatment after unproven treatment.  One of the single biggest stumbling blocks for me in accepting my daughter’s “autism” (I write it this way, because this was how I thought of it, as something separate from her) was that I believed it was within my power to change her autism.  I thought I could remove it.   As long as I continued to hold onto that belief, I couldn’t accept her autism or the idea of her as an Autistic individual, she was Emma who was diagnosed with autism and therefore, my thinking went, could also be diagnosed withOUT autism.  These two points were key in my thinking.  Anyone who suggested I not think of my daughter and autism in this way were disregarded.

I no longer think in these terms.  But I read the often heated exchanges between parents who accept autism and their Autistic children, and those who maintain they accept their child, but do not accept autism.   Interchange the word “accept” for “love” and things start getting really volatile.  None of us welcome anyone who suggests we do not love our children.  And truthfully, this is where, I think, the disconnect happens.  I think this is less about love and more about having a different understanding of what Autism is.  If autism is seen as completely negative, (something Autism Speaks has perfected to a science by using words such as, affliction, epidemic, crisis and tragedy) this horrible thing that causes my child to writhe in agony, an “affliction” with no redeeming qualities, coupled with the belief that autism is something that can be removed, in fact has been removed by many parents who have gone on to write memoirs about their triumphant courage to change the things they can, then what parent wouldn’t welcome their child relief from that?

But if Autism is seen as something complex, woven into the very fabric of a human’s being with a wide range of attributes as well as challenges, all of this becomes far more complicated.  It was this idea, so beautifully described in eloquent detail by Julia Bascom in her blog Just Stimming that made me pause.  Her description of the challenges and joys of being Autistic were what made me stop and reconsider everything I thought I knew and believed.  As long as we hold to the view that our child is locked inside a seemingly impenetrable shell called “autism” while listening to that seductive, whispering voice assuring us that we can break through that shell if we just try x, y, and z we will struggle mightily with the idea of acceptance.

Emma – 2002

11 responses to “Autism, Acceptance And Love

  1. I must admit, when the thought that my son has autism first became a possibility to me, I didn’t know much about it. I hadn’t even see ‘Rain Man’ all the way through (I didn’t care for Tom Cruise). When his diagnosis came down, finally, I wasn’t devastated by it, because I had been tossing around the idea in my mind for about a year before we came to figure out where he could be evaluated. Disability didn’t frighten me, I had an older brother with cerebral palsy, what really frightened me was that my son would never speak, would not be able to have friends, would not be able to read, write or go to school. Would never call me momma or tell me he loves me. Basically, that he would not progress beyond where he was at the age of 3 when his diagnosis was first given. However, getting the diagnosis allowed me a path of where to go to do what was best for my son. I suppose to a degree that I am fortunate as they told me he has mild to moderate autistic disorder, so many things may come easier for him then for those children who are more severely effected.

    The first couple of years after diagnosis were the hardest. We had begun teaching him sign language, even before his evaluation, to help him communicate with us, something he hadn’t been able to do since he was 14 months old. The meltdowns were hard to deal with and I would sometimes end up crying right along with him. I wanted to help him, but I just didn’t know how. As he’s gotten older, his communication skills have improved, the Early Intervention program and Special Education Pre-School were invaluable to me. The therapy we took him to didn’t have as great of an effect, simply because they switched his therapist 3 times in 4 months and every switch meant going back to square one because they disrupted his routine and he didn’t respond well to that disruption. In the end we decided it was too much stress to continue the therapy (having no car and only really available for therapy one day per week made it really difficult and added to an already stressful situation). But I had learned some good tricks to use at home and so I worked with him myself. Teaching him letters, reading to him, painting, coloring and playing with sensory toys and objects.

    Amazingly, over time, he improved. He became less sensitive to things that before he couldn’t tolerate at all. He can speak much better and even now, after starting kindergarten, is beginning to use pronouns correctly and making statements in the first person rather then the third person, and his echolalia has diminished. But I wasn’t ever aware of just how much progress he has made, until one day we were watching old videos of him from one, two and three years ago and seeing how different he was. He still seems like the same, happy, sweet, funny little boy he always was, but just like with my older children before him, his progress has been gradual and not really noticeable over time, except by looking back in time at how he was then. Having raised 5 NT children, and still raising my youngest who is autistic, the only difference between the progression they all made, is the length of time it’s taken my youngest to progress. And I’m probably a little more aware of his actual progress then I was with my older children, because with them progress was a given, but that isn’t the case with my youngest child. And constantly watching him and working with him kind of leaves me ‘in the moment’ with him rather then looking at retrospectively to see how far he’s come, until we take the time to watch old home videos and then tears come to my eyes because he has come a long way. Even his meltdowns have diminished, in fact they began to diminish as soon as we had given him a tool to communicate with us. I just didn’t realize they had until I took the time to look back and actually notice. I suppose part of the reason I spend so much time in the present with my son, is because he is my last child. I wasn’t supposed to be able to have him so never expected him to come along. But since he did, I was determined from the moment I first knew about him to spend as much time with him, and give him the best experience in life that I could. Little did I know at the time exactly what that would mean for both of us.

    Basically, my son is who he is and has been that way since birth. There isn’t really anything that would make him someone different, and he would be very different without autism. But I wouldn’t want my NT children to be anybody but who they are, so why would I want that for my youngest, just because he is autistic? I think that is the core of everything relating to autism and acceptance. This wonderful, charming, intelligent child, is not a trophy meant for me to show off. They are an individual, meant to be who they are and it isn’t up to me, or anyone else to try and make them someone different. Everyone has their own special talents and skills that they will excel at. My oldest child is a great artist, my youngest has trouble holding a pencil or crayon. However, my youngest as an amazing ear for music and rhythm and has picked up numbers and basic math concepts much quicker then my older NT children. With the proper support and encouragement, he could very well be a music and math prodigy. Of course, I will still love him even if he isn’t, because he is my son. No talent, or lack of talent, or diagnosis for that matter, will change that, nor diminish his value in my eyes.

    *Sorry for rambling. I didn’t realize I was until I was done*

  2. I ramble almost every time I post.

    On this topic I don’t have much to say. The battle I wage as far as acceptance of my own autism (or more precisely when it impacts something I wasn’t expecting it to) Is ongoing. I can;’t know what it would have been to be my parent. They were not able to be accepting but that was actually conventional wisdom at the time (if your kid talks and we are relatively sure their IQ is okay then forget all about the horrible a word or the child in question will somehow get more autistic)

    I find it puzzling though sometimes that I have to make a case to people who presumably have the educational background to know this that there is no curing my autism without curing me of being me. It seems like people with PhDs in neuropsychology should just know that. It’s pervasive, and neurological.Has shaped every experience I have had since I existed. Someone explain why there is even any debate on the possibility there. While my arthritis and other issues also shape me it’s a completely different level of magnitude when it is your brain that is not typical.

    A few people object to my acceptance of my autism for some reason as being overly deterministic. Anyone care to explain why comprehending what pervasive neuro-developmental disorder implies is somehow something to be corrected? Sorry very high paid expert who thinks I will succumb to depression if I don’t factor in how my autism impacts everything but the opposite is true. If I actually shelved that thought and walked into the world every day with that knowledge gone life would be unlivable.

    Some very simple things are close to impossible for me. Some things that I normally can do there are times I can’t. Stress can wipe out any “progress” for an indefinite amount of time and somehow it is a bad thing that I understand that? Imagine if all the same were true and it just seemed random why. (I really would like a coherent explanation of this view point because it is one I encounter almost daily so some one out there in NT land give it a shot because decades into this I still don’t know)

    See I started saying I had little to say and yet…

    • Gareeth – sometimes as I read your comments I wonder if you have any idea how much I have learned from you. I wonder if you really know how much I look forward to and enjoy reading your words, these thoughts, your experiences. I love rambling, because rambling is a peek into another person’s uncensored thinking. I feel tremendous gratitude for allowing me in. It’s like you’re saying – here, I trust you, this is what I think. I’m vulnerable, I feel this, this is what happened, this is what I have come to believe, this is what so and so said.
      All these things you’ve written about acceptance were not things I understood a year ago. I didn’t. I think the most basic information that the public hears is faulty. Autism is steeped in words that encourage fear and the unknown. Perhaps more than anything else, fear causes people to reject the idea of “acceptance”.
      I am hoping we can chip away at the fear.

  3. I have an idea. When the internet first came available to the general public I could see almost immediately that it could make a difference in the life of the new generation of people with autism. I spent a lot of time reaching out to parents back then on an autism support channel and later to a broader audience during a brief time when I was writing articles for a click to view site that of course died when some of it’s authors became popular.

    During that time though I heard from people all around the globe about specific ways what I had said had helped or seeking permission to use the material in various settings. I keep meaning to revisit those articles as when the site went down so did my momentum so my brother views it as one quarter of a book and me as a bit of a slacker I think.

    Some of the people I met at first online with kids with autism I would meet in person. Some I never did but many I am still in touch with.I feel like a dinosaur when I see those original “kids” in grown up form on facebook.

    From early on I viewed it as an ethical obligation really to try to present things from this point of view. Not everyone can and even of those who could many won’t. I was able to see very fast what a difference it could make in the life of a few specific kids I had more contact with so I carried on. Never really viewed myself as a self advocate as it is a better outcome for the current batch that I have seen as important. Still doing what I could helped me a lot as far as making sense of my own autism. I gave up the ridiculous notion that I could learn to better emulate NTs given enough time and effort and realized there are things about me that if they stopped viewing them as symptoms they would do well to emulate.

    I was overly optimistic about some things though. Of course the very same tools that can be used to inform can be used (and often more efficiently) to misinform. I was also overly optimistic as far as the potential for new, damaging theories on autism to emerge but for the last part I have a plan. Dr Simon Baron-Cohen’s most recent work alarmed me out of complacency as far as my academic progress went so if things go according to plan I am aiming to go to grad school in 2014. It’s too easy for first person perspectives to be dismissed so when I tackle his ridiculous science I want the weight of a Dr. attached to my name. Still mind boggling to me that he hasn’t clued into his results as an artifact of his scale or thought much about the notion that autistic empathy may be different which isn’t even a new idea in the field.

    • I think this is a great idea, Gareeth. I know I am not the only one who would feel extremely grateful to read your words!

    • “It’s too easy for first person perspectives to be dismissed”. So true. It’s a notion I have been fighting for years (often with my fellow counsellors, the very people who ought to understand this concept most of all) with the issue of domestic violence (but it applies to many topics). It’s ridiculous to say that because someone’s experience is subjective that they know less about it or know it “less well” than someone who has “studied” it dispassionately. But in the hierarchy of ‘acceptable’ evidence this is what happens. We don’t need a balanced view of ‘both sides’ or a middle-of-the-road approach when fighting prejudice.

  4. Beautiful rambles, it comes from the heart. Sometimes if we can’t change the situation directly love and compassion can go a long way

  5. Pingback: Always Read the Label | Musings of an Aspie

  6. Pingback: Awareness Sucks | Emma's Hope Book

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