“…….happy endings are possible, even if they’re not quite the endings originally envisaged.”

So an article in today’s Telegraph about love and Asperger’s syndrome describes the relationship between Sarah Hendrickx and Keith Newton. The couple met through internet dating:

……the first stage of their relationship was fiery and fraught. To Sarah, Keith was ‘a puzzle’. He’d plainly state that their blissful weekends were enough for him, that he’d never live with her or even move nearer. Sarah frequently found him selfish, cold and distant. Keith found Sarah hard work, demanding and ’screechy’.

Hendrickx got a job with ASpire, an organization which works with adults with Asperger’s, and realized that Newton might have Asperger’s; he eventually was diagnosed.

Learning about AS, he says, was ‘life-changing’. Suddenly what Sarah describes as his ‘isolated, biscuit-eating life’ made sense. Keith had been bullied at school and gone through university with no friends at all. He’d had only two jobs in his life doing the same thing and two very short-lived relationships (the first at 31). ‘From an early age you try to join the world, but gradually, with rejection and not being able to understand social situations, it becomes too taxing,’ he says. ‘I wanted relationships with women but didn’t have the confidence, the tools or the means.’

Hendrickx and Newton have co-written a book, Asperger Syndrome - A Love Story.

And as for that opening description of a happy ending being possible, even if not as “originally envisaged”: This is very much how I think about life with Charlie, a good and a happily ever life—-with a lot of twists in the plot and surprise of an ending. And always, lots of love.

Autism Changes Everything is the title of an article in next Sunday’s Parade magazine, in which Autism Speaks co-founder Suzanne Wright describes how her grandson, Christian, slipped into the “grip” of autism and how “[o]ur grief evolved into feelings of anger and, eventually, determination.” She notes that she and her husband, Bob Wright,

….simply could not fathom why so little was known about a disorder that was devastating thousands of families like ours. Where were the impassioned speeches on the floors of Congress? Why hadn’t anyone told us this could happen to our grandchild—to anyone’s child?

Curious. From these sentences, you’d think that no one who was anyone had heard about autism or knew what it was when Wright’s grandson was diagnosed in recent years. (If no one had told Wright that “this could happen to our grandchild,” is it possible that, if and when someone did, she was not listening?) Wright has previously said that she hopes to make autism “a word for the history books“; in her Parade magazine article, she talks about “stem[ming] the tide and ultimately eradicat[ing] autism for the sake of future generations.” Wright further notes that ” If we continue our current trajectory, we’ll get there in my [her] lifetime.” Her rhetoric is a little vague about the specifics of the “tide” to be stemmed and the “trajectory” meant, but can be divined from the numerous research studies funded by Autism Speaks.

I’m not sure if Wright chose the title of “Autism Changes Everything” for her Parade magazine article; I suppose the title can be seen as referring to the changes (loss of speech, behavior issues) that Wright saw happen in her grandson. There’s another way to understand the notion of “autism changing everything”: Unlike Wright, I don’t think that autism took my son in its “grip” and turned him into some wholly other child like the changeling stolen by trolls in a folk tale. Charlie has always been Charlie and autism has changed “everything” in that I’ve had to change myself, my job, where we live; had to let friendships and plans go, as Charlie’s needs always come first. Just today, I left work early to attend a school meeting about transition planning: Charlie is going to middle school next year; our school district is starting its first program for high school students and stepping up a lot on job training in the community. Sometimes I feel that the entire next 10 1/2 years—until Charlie turns 21—are all laid up for me, centered as my thoughts are on teaching Charlie the skills he’ll need for a successful life with as much independence as possible.

Wright does acknowledge the needs of autistic adults in a brief phrase (”adults with autism are failing to meet their potential”). Nonetheless, I find her statement about autism becoming “a word for the history books” an unfortunate turn of phrase, with potentially alarming ramifications. Wright notes her hope that autism be “eradicated” in “[her] lifetime”; if I may presume, my 10 1/12 year old will outlive her—–and my son is autistic for life. He has minimal speech, is very delayed in his academic and cognitive abilities, and is prone to tremendous behavior problems if the right supports and structures are not in place and there’s no magic supplement or pill or technique that is going to change his neurological wiring. “Eradicating” autism means the eradication of autistic persons. Wright, in her effort to make a strong statement about the “autism crisis,” may be saying some things she did not (I think?) intend to.

I’m sure that some will say that I am “reading too much” into Wright’s words and subverting her meaning into some sort of agenda. I have to say that, after raising my autistic son for the past 10-plus years, I have become extra-attentive to nuance and curious turns of phrase, to the extra meanings that get lodged in people’s words and communication, whether they know it or not. I hope that Wright might re-consider these statements about making a “a word for the history books“: Before we all know it, today’s autistic children will become tomorrow’s autistic adults and rather than plan for a world without them, we need to start changing this world to make it a better place for them to live and grow and be.