Estée KlarThe Joy of Autism

Every time I watch a new episode on autism from CNN, I’m ready to turn off all phones. For certain, I’ll get a call about ABA,  and that maybe Adam “should have had more of it,” and then there is all that dark talk about autism and “sieges” and gosh, it’s no wonder I want to write about other things. All we want to do is live our lives in peace! Why can’t autistic people be permitted to do so without constant references that they are not good enough with pithy reports by CNN? Heck, why isn’t inclusion, autism and disability (all in the same sentence) headline news?

Giving the benefit of the doubt to Karen Siff-Ekorn and her family,  I wonder how CNN edited this piece as it so neatly angled to support the recent Geraldine Dawson study on Early Intervention. The CNN piece, with Siff-Ekkorn, described how ABA recovered her son Jake. The implication here is that ABA is the Early Intervention in question by association. Yet, no parent can claim that one particular kind of therapy can “recover” all autistic people. No one parent or clinician can speak for all individuals and all families. In all fairness it might be more accurate to say that every autistic person responds to different teaching methods, well, differently. “Evidence” abounds, but the discussion of study-design is conveniently left out. In every statement or claim,context is everything

When Adam had a rigorous ABA program for the first two years after his diagnosis, his anxiety got in the way of his learning. All of those M&M’s and “look at me’s” sent him through the  roof. One therapist even tried to physically wrestle him into submission (there is one thing that is certain — like his mother, Adam will not be wrestled with). It is definitely not a successful way to teach Adam.  It seems like so long ago now, but remembering actually gives me a lot of pain.

I definitely see that Adam has benefited by early play therapies, occupational therapy, visual supports, keyboards, computers,  and recently we restarted speech language therapy because it didn’t make much sense to do SLP on a child who couldn’t talk well enough and got extremely anxious when he tried. Once ready to “articulate,” he is now responding very well to SLP.  In other words, you can’t fight mother nature, but you can support her. We’ve all got to try and figure out the best approach for our unique children and understand when certain autistic children are ready for certain approaches.

In our case, ABA would have created anxiety in Adam that would likely have been irreparable. And let’s face it, every year, there are better therapists emerging, integrating a variety of methodologies and eager to understand how an autistic person learns well. Adam today is a happy little boy (still with some sensory and anxiety issues that are being managed) who has begun to draw, who speaks more this year than last year, who types now independently, who is learning his life skills well, and who can do more with his body than he could a few years ago. These achievements can never be taken for granted.  It saddens me if people do not acknowledge his marvelous successes (because he remains autistic) for he really does work very hard. But that is not, thankfully, our experience here on the blog. I hate to think that there is an autism archetype he must measure up to — that paradigm of recovery. What if he doesn’t talk fluently or require an assistant in his future to live?  I mean, the boy must continue to learn and feel successful and gratified in his life!  Does being fully independent matter? I know we all want it, if not covet it, but is it that important under the circumstances? If an assistant or a visual aide or a keyboard is what he needs to be in the world, then isn’t that enough? Being a parent of an autistic child in this day and age requires constant internal dialogue and discipline.

I would also like to refer readers to Kristina’s Chew’s blog and others who do not on any account suggest that their children have “fully recovered because of ABA,” but who discuss ABA and autism thoughtfully.  Few  parents of autistic children will dispute that engaging an autistic child is important, and all of us do this in one way or another and for lack of proof (mainly in our very own living rooms) have tried a variety of approaches.  Also very important living with autism is idiosyncratic rest and play,  (I say this because autistic play is deemed abnormal by our society and many, not all, ABA proponents, while autistic adults have discussed how vital and important that play can be to their development and understanding of their environment), and being with family and friends, even if “being with” looks a little different. So is living within one’s community as a respected human being. So is acceptance and support of children past those ABA years into adulthood. If autistic people have to recover, then what of those adult years?

I cannot crystal ball gaze, but I am grateful for what Adam has been given in life so far, and as all parents, I fret about middle school and high school lest someone tries to attempt to beat him once again into submission, or turn him away.  I guess mom is still wrestling with the issues that CNN creates when it presents one-sided recovery reports — lack of acceptance, lack of supports, lack of employment opportunities and the like.

The “full recovery” tales are dangerous without balance and without discussing what can happen by suggesting that normalcy, the way we have come to understand it in our society,  is the Holy Grail of being, or in this case “becoming” human. CNN once again only tells half a story.  They also stigmatize families like my own where we are accused, by insinuation, of not doing enough for our children when we are doing absolutely everything humanly possible to create the best future for our kids. Actually, in autism politics, we are living in a Catch-22 nightmare where we can hardly speak a word about a success or a word about a challenge. No matter which way we all turn as autistic families, we are criticized, which is why I want to give Karen the benefit of the doubt and congratulate Jake on his wonderful achievements — not because he “lost his autism diagnosis.” I congratulate all the autistic families and all of their achievements too, not that I matter so much in all of this except for in Adam’s life, but isn’t this what we should all be doing?

CNN does not like seem to cover stories often enough about autistic people living in adulthood who require supports, assistants, and who, living as autistic people, or “people with autism,” live “successfully,” (or perhaps they may feel they do not, which also warrants fair discussion). It is once again the hero-story or story of some triumph and autism must be the enemy. Naturally, I disagree with that kind of manipulation.  CNN especially doesn’t like to pick autistic people who would take issue with the angle of that recovery report in order that the complex issues really get covered.  CNN does not report stories  like ours often enough, where families work so hard to provide the love and supports our children require to communicate, learn and, if physically possible, talk more, while leaving out “the siege” angle and uncovering more complex notes that joy does exist with intense struggle as simple as is the metaphor of life. I would like Adam to talk more, and he is every year. But if he does not talk consistently in his future, I will not judge him nor myself. I made that deal with myself a couple of years ago every time I gasp for air in some fleeting moment of panic.  I will not say our trials at “recovery “were unsuccessful for that word is not in my vocabulary in the way that we typically refer to it.  Let’s face it, our definitions of “success” need some serious rethinking.

So like the Brittany Spears song goes, CNN, “oops [you] did it again.” You told the world (again) that recovery is possible and thereby suggested that this is what all autistic people and their families must do at all costs, and yet our families remain unsupported in all stages of life.  You run the risk of sending millions of parents and families into despair if their children do not “recover” in the manner you show and suggest. You endanger about eighty million disabled people in North America with the suggestion that disability is not an acceptable state of being human (not that all disabled people understand autism, this is true, or that all disabled people are in agreement about disability issues). You tell half a story, and it is not the story of so many families. There are many stories of great happiness in families out there living with autism as there are stories of “sieges,” and much of life’s success comes from how we regard and deal with things. Stories like this one do not help with the need to be positive when there are many pressures beating upon us.

And believe me, even with all of this, the joy does exist with autism too.

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