Thank you, Dr. Wing

When I first began researching autism, I came across the work of Dr. Lorna Wing, a true pioneer in the field of autism research and acceptance.

Dr. Wing was a female researcher and psychiatrist at a time when that was a rarity. She was a mom trying to deconstruct her daughter’s elusive condition. She resurfaced the work of Hans Asperger, and renamed “autistic psychopathy” as “Aspergers syndrome” for fear of what the earlier term might connote.

Dr. Wing was an early proponent of the notion that autism doesn’t necessarily equal intellectual impairment. And, she was at the forefront in arguing that autism is likely a cluster of underlying conditions with a common core of symptoms, not a singular condition, something many scientists are just now coming to understand.

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What I’ve been reading – June 2014

Here are some things I’ve been reading that you might find helpful, informative, or inspiring.

Bury My Son Before I Die. “I used to worry about Benjamin dying but now fifteen years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.” Gut-wrenching and brutally honest. Read more

When You’re Gone: Practical Planning for Your Child’s Future. A helpful and thorough guide to the things special needs parents should do now to help their child after they’re gone. Read more

The Obsessive Joy Of Autism. “If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not ‘age-appropriate’, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.” Read more

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Father’s Day wish

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The thing I want most this Father’s Day won’t come from anyone but me: I’d like to be the dad I am on my best days (and in my better moments), not the one I am on my worst.

Whose journey is this?

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I started writing this blog to give something back.

When C was first diagnosed with autism, I wanted to learn as much as I could. A big part of my research included reading ASD parent blogs, some of which were so helpful that, after a while, I felt I might like to share what I was learning, too.

Over time, however, I was reading fewer parent blogs and more blogs written by people with autism. As my son is still young, hearing from older people with autism was revelatory and inspiring.

And so lately I’ve been wondering, whose journey is this, anyway?

As someone who now follows autism closely — including the political, social, scientific, financial, and philosophical perspectives — I feel the focus is still mostly on us parents and what we go through, and not enough on the people who actually have autism.

Or, as Tommy Christopher recently put it, “Autism is not about you, Jenny McCarthy, Joe Scarborough, Autism Speaks, autism parents, and shitty reporters. It’s not about how hard your lives are, or what saints you are for not murdering them, or what bogus science you’re spreading. It is about the children with autism, and the adults that they become. If you love someone with autism, if you care at all about them, you need to fix yourselves. A good place to start would be to listen to them.”

I’ll continue to share my experiences as a parent, some of which are difficult. But as I write about this journey, I want to be careful to make it clear that this is not a tragedy, and we are not victims. Yes, the system is broken. Yes, there are challenges, just as there are challenges in any life. Yes, I have fears and frustrations.

But mostly I’m happy because my son is awesome, and on a daily basis I consider myself damn lucky to be his dad.

I started writing this blog to give something back.

I wanted to help parents just as I’d been helped by others. That hasn’t changed. But what I’ve come to realize, and what I hope to share with others, is the perspective that what matters most isn’t us parents, but our children…our children who will become teenagers and then adults.

This is their journey, and we’re just along for the ride.

Failing C

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Our son C has what’s sometimes referred to (non-scientifically) as a “scattered neurology” (high intellect, severe behavior / social deficits), the upshot of which is that it’s incredibly hard to find an appropriate educational setting for him.

So hard, in fact, that the DOE told us they don’t have a spot for him, and have recommended some schools that might. The problem is that some of these schools are up to two hours away, or don’t focus on C’s particular type of autism.

Add to that the fact that we’ve already been rejected by some schools who say they cannot support C’s unique neurology, and we’ve been feeling pretty down.

Then, one school appeared like an oasis in the desert, a school that could engage C intellectually while helping with his behaviors, a school that created a program focused specifically on children with the same form of autism, a loving school with dedicated staff.

Since C’s been in a somewhat inappropriate educational setting for almost two years — one that does’t focus on autism, let alone children with a scattered neurology — it felt like we’d finally had a stroke of luck.

Last Friday the bad news came: we have one week to come up with a huge deposit to secure a spot in this amazing school. This is the kind of deposit that would ruin us financially; given all our past medical and therapy bills, we’re already at the breaking point.

Certainly we can seek reimbursement from the the DOE since they don’t have an appropriate spot for C, but that’s risky: we could have our request denied by the DOE and end up owing the entire sum, plus legal fees. In any case, some future arbitration won’t help us come up with the required deposit this week.

And now we’re scrambling: how do we find a school for our son before September? Do we bankrupt ourselves, cash out our paltry 401K? Do we move someplace (where?) with the hope that they have better public services? Do we put our son into a completely inappropriate educational setting for yet another year?

And so we feel the system has failed our son, yet again. Perhaps more to the point, however: we feel we’ve failed our son…yet again.

And this is a truly awful feeling.

Postscript: people sometimes ask how hard it is to live with autism. My answer: in our particular case, it’s not autism that makes life unbearable, it’s the system and support services (insurance, schools, etc.) that do.

The Implications of Jake’s Story

I’ve been meaning to write about Jacob Barnett for some time now. Actually, I’ve really been meaning to write about the way the media tell Jake’s story.

If you’re unfamiliar with Jake, he’s a child (now teenage) prodigy with Aspergers. In fact, he’s the rarest kind of prodigy, one whose IQ is thought to be greater than Einstein’s. As if being a genius isn’t enough, Jake has already done extraordinary things in his young life, and many think he will ultimately be a Nobel Prize recipient.

Jake is also a favorite topic of the media who like to use his story to remind us, in the most heartwarming and inspirational tones, of the hidden potential in everyone, and in particular people with autism.*

Last month, for example, another story about Jake appeared in my various feeds, and was forwarded to me by well-meaning friends, the implication being, I guess: “See what your son might accomplish if you believe!” The article describes how Jake’s mother Kristine Barnett “…totally disregarded what experts said about her son and threw off the label that was slapped on him as a toddler. Instead, she followed her own instincts – with astounding results.”

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Standing Up

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I read and answer questions in various autism-related communities. Recently, someone in one of those communities asked me to respond to this question:

What are the goals of the autism acceptance movement?

I don’t consider myself part of any movement, and I don’t have autism myself, but I thought I had something to say on the issue. Here’s how I responded:

“I want help for my son, but I do not want to cure him. I want him to have the same opportunities as his neurotypical twin, but I also respect and appreciate the differences between the two.

“I know some parents of children on the spectrum want to ‘cure’ or ‘recover’ their children, but I also know many parents who have no interest in this approach. Like me, they just want acceptance and acknowledgement. They want communities and systems that are supportive of them and their children.

“Therefore, my part in any kind of movement is to stand up as a parent who accepts his son’s autism, even when it’s challenging, and to state my belief that autism is a distinct neurological condition, not a manmade disease, infection, or form of toxic damage.

“I want to share with others what I believe: that autism has always been with us, and that any increase in numbers is due to a broadening of definitions, greater awareness, and improved early intervention services.”