Letting Go of Asperger's—Not So Fast!

Thoughts on a so-called vanishing diagnosis

Posted Mar 06, 2014

Have you ever been at a party where a friend tells a story about you, and their words seem totally at odds with what you recall of the events? That’s how I felt when I read Hanna Rosin’s Atlantic story — Letting Go of Asperger’s — that was in part about my son, his childhood, and my book Raising Cubby. As I read Hanna’s words, it struck me that her reading of our story must have been colored by her own life with a much younger autistic son. The incongruity I experienced was perhaps from her expression of hope for her own son’s future more than anything else — a natural thing for any parent to feel. While I enjoyed parts of Hanna’s article, I disagreed with some of her ideas, and particularly her interpretations of my and my son’s lives. I’d like to expand upon my thoughts in the passages below, following quotes from her story.

 At the beginning of her article, referring to her son, she says, "a psychologist diagnosed our 10-year-old son, Jacob, with Asperger’s syndrome. Four months later, the American Psychiatric Association declared that Asperger’s was no longer a valid diagnosis, and removed it from the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders."

The implication of those words is that her son “lost his diagnosis.” That assumption, while common, isn’t quite accurate. Many parents got that impression from speculative articles about DSM revision in recent years, even though the Asperger diagnostic label was never rendered invalid by changes to DSM. It was merely subsumed within a new and larger category — Autism Spectrum Disorder (ASD.) Asperger’s remains a valid descriptor within DSM5 ASD, and a person with Asperger’s will always have that diagnosis from a historical perspective, but for the purpose of receiving services that person might say they have an ASD diagnosis in the future.

It was never the intent of the DSM autism committee to tell people with Asperger’s, “There’s nothing different about you anymore, and you don’t need any support.” Yet that is a common fear; one we should work to allay.

A few lines later, she writes: "Asperger’s . . . was assuming the status of a signature disorder of the high-tech information age." While many people feel that way, it’s important to point out that ALL the features of Asperger’s that people discuss today were described by Dr. Hans Asperger in 1938. The diagnosis may seem like it’s suddenly in vogue because of increased awareness, but the features of Asperger’s and the autism spectrum are nothing new.

Rosin goes on to say, "This fall we moved [my son] to a program that has the word Asperger’s in its name and a curriculum that integrates social and emotional learning into every lesson — that caters, in other words, to a population that technically no longer exists."

But this is misleading, and we shouldn’t equate a change in the DSM with a disappearance of the Asperger community. Of course the population still exists. Her son is proof of it. The integration of the Asperger community into the broader autism spectrum community did absolutely nothing to alter either the gifts or disabilities of the individuals. As an adult on the autism spectrum — or whatever you want to call my diagnosis — I can’t help but feel insulted and marginalized by this statement, living as I do with a so-called non-existent difference every day 

I’ve been tested both before and after the DSM5 was released, and my abilities and disabilities remain just as they were. Five years ago, my test scores put me on the autism spectrum and psychiatrists called it Asperger’s. Today they put me on the autism spectrum and they call it ASD. There is zero difference in me, and the change in terms has no meaning in my life.

A few things about me are exceptional, though it took me a long time to realize that. Thanks to my autism, I have an unusual power of focus and concentration. I’ve got a good ability to see patterns in things. I work well on my own. At the same time, there are many other areas — common social skills being a prime example — where I remain weak or dysfunctional, even at age 56. Dismissing our differences as “not existing” is at the least disrespectful, and for people who rely on autism or Asperger services to live — it’s tremendously threatening.

 Rosin goes on to say:

"For John Elder Robison, the [DSM5 Asperger/autism] revision amounts to an abrupt and unwelcome assault on an all-important identity. “Just like that, Asperger’s was gone,” he wrote in an essay on New York magazine’s Web site. “You can do things like that when you publish the rules. Like corrupt referees at a rigged college football game, the APA removed Asperger’s from the field of play and banished the term to the locker room of psychiatric oblivion.”

While I stand by the words I wrote, the real meaning of the DSM5 autism revision is far more nuanced and subtle. I recognize that it’s an assault on the identity of many folks on the spectrum, but it is not terribly troubling to me personally. However, I may be in the minority as far as this goes. Rosin may have confused my observation — which is about the way much of the adult Asperger community sees the change — with my own feelings on the matter, which I did not really state in the New York Magazine article she cites.

The changes to DSM5 are an effort to bring what I regard as a deeply flawed set of diagnostic descriptions into better alignment with the World Health Organization’s ICD, which is the accepted global set of definitions for disease and disorder. As members of the UN and the WHO we Americans have agreed to make ICD our primary set of definitions. Yet we are also the only country in the world who has presumed to create our own parallel set of psychiatric definitions (the DSM.) I know the people on the DSM5 autism committee. I have a high regard for them and their work but I think they had an impossible task. Frankly, I think DSM has outlived its usefulness and we should scrap it in favor of ICD 10. That’s what we use to report to WHO. It’s what we use for all government insurance billing. And it’s what almost every other country in the world uses for everything else. We should too.

I do think that the elimination of autism, Asperger’s and Pervasive developmental disorder not otherwise specified (PDD NOS) as separate DSM categories will have a big impact on some school districts. Many school systems have defined sets of services associated with DSM diagnostic labels. If the familiar labels disappear, how will they know what services to provide? The fact is, most autism services in America are provided through our public schools — not the medical system. By changing the autism spectrum definitions we have thrown a huge wrench into these works and I think it will take some years to sort that out.

The changes to DSM5 do reflect the current belief that autism, Asperger’s and PDD NOS are all points on a curve, and a therapist cannot distinguish one from the other in an adult. However, eliminating the individual codes for DSM5 is likely to prove hasty and ill-advised. Right now, new brain imaging studies suggest that we may soon be able to recognize different autism spectrum subtypes like Asperger’s through image analysis. In addition, research into other biomarkers may well bear fruit in the next decade.

For myself — to return to the question of how I feel about this — I don’t mind being an autistic person, as opposed to an Aspergian person. But I recognize that calling myself autistic may be confusing to other people, because the autism spectrum is so broad. A person might meet an autistic person who cannot speak, and then encounter a very precise speaker like me — also autistic. What is he to think autism is, given that observed dichotomy? The use of one term for a condition with such broad affect is indeed confusing to the layman.

That said, I am fine calling myself either thing, or nothing at all. Frankly, I like to think I am more than “just” autistic...I am a successful engineer, auto restorer, writer, photographer, and family man. Ok...maybe I am more or less successful at some of those things, but the point is, I do them all, and none are “autism.”

Moving on to Rosin’s interpretation of the story I tell in Raising Cubby:

Robison, who grew up feeling under siege in a deeply dysfunctional family in the 1960s, champions the label and the tribal protection it offers in a “neurotypical” world that he is sure will always stigmatize and misunderstand people like him — and like his son, Jack. Yet Robison’s new memoir, Raising Cubby (that’s Jack’s childhood nickname), turns out to offer vivid evidence that just the opposite is true. The world his son grew up in is welcoming in ways that Robison curiously fails to recognize, even as he recounts them in great detail.

It’s interesting that she sees my story in this way. It’s certainly not how I perceived events as they unfolded. Yet looking back, in some respects I agree she is right. My son was welcomed in the home, the school, and the community in innumerable ways in which I was not (as a child.)

That said, I do not think the world will always misunderstand and stigmatize people like me. In fact, I work very hard on government committees and in private groups to change that situation and I have great hope for success.

However, while some parts of society my have accepted my son, I believe the actions of the district attorney in Raising Cubby show that there are still people who will try to twist the unwittingly inappropriate actions of a neurodiverse teen for their own self-serving purposes.

In fact, this is a far bigger problem today that it ever was in my youth. We have criminalized so many things young people do, and we ruin lives with the resultant prosecutions. The United States leads the first world in the percentage of its citizens incarcerated or on probation. And it starts with teens like my son. 

What Rosin takes away from my depiction of Cubby’s school experience is a generous, and somewhat rose-colored view; one that feels very much at odds with my memories.

In his earliest years at school, when Cubby had trouble reading, his teachers thought he was slow, or stubborn. But a school psychologist helped Robison and his wife pressure the school into having him evaluated. After that, he was in attentive, therapeutic hands. His parents got him into the Yale Child Study Center, where experts closely observed him and analyzed his academic gifts and challenges. He moved to a Montessori school, where he felt “happy and safe” and “excited about going to class.” Harry Potter turned out to be an opportune cure for his reading troubles. As middle school ended, Robison built a house in Amherst, Massachusetts, so Cubby could go to a good public high school. He struggled with the academics, but his parents spent every extra penny on tutors, who helped him with the disorganization that derails many kids like him. Meanwhile, in the social world of public high school, Cubby was more than accepted. His ability to attract other kids, Robison writes, was “wonderful to behold.” Even more amazing, he managed to land himself a girlfriend at 14, an age when Robison “had only dreamed of holding hands or kissing a girl.”

If only that paragraph were true! There were a few helpful people in the public school system, but on the whole, our experience with the South Hadley and Amherst systems was a nightmare. Never in my wildest dreams would I say they helped Cubby thrive.

He absolutely did better at Montessori, but that program ended at 5th grade. And despite spending thousands on tutors, my son’s executive function remains a problem even today. It’s effectively prevented him from completing college even as he is about to turn 24.

I wish with all my heart that this situation were different, but despite all my pride, hope and effort, it’s not. My son has many gifts, but he is also disabled by some of the very traits that make him unique and special. That is the hard reality of autism...the things that make you wonderful cripple you too, and often at the same time. It’s a way of life I know all too well, despite my commercial successes.

Perhaps not surprisingly, Jack seems to have emerged into young adulthood sharing none of his father’s defiant need for tribal solidarity. In 2011, the same year Robison published an advice book for fellow Aspies called Be Different, his son took another route into print. Jack, then 19 and at college, ended up in a front-page New York Times article that described his tender relationship with a female student, also diagnosed with Asperger’s. Far from a portrait of barricaded otherness, the story highlighted a quest for mainstream happiness, rooted in human communication and connection.

Hopeful as that article was, the relationship it described foundered in the summer of 2013. My son is still living on his own, but he’s doing so alone, as he figures out what comes next. School has not worked out so far. He has a great many ideas for inventions that may change the world, but making dreams real is a lot of work, as he is discovering. I have great confidence that he will succeed, but I cannot begin to guess which of the many possible paths he will choose.

Right now, he and his mother are overhauling one of the original light guitars for former KISS lead guitarist Ace Frehley. And he's deep into a robotic chemistry lab design. All the while he is working on programming and a thousand other things.

As for myself — the words I wrote in Be Different remain true — our differences can indeed be key to our success. But the challenges of autism remain real too, even for those of us who have few if any visible disabilities.

John Elder Robison

John Elder Robison is an autistic adult, and the NY Times bestselling author of Raising Cubby, Be Different, Look Me in the Eye, and the forthcoming Switched On. He’s a member of the Interagency Autism Coordinating Committee of the US Department of Health and Human Services and he is Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, VA.

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