Forget Normal

Forget “normal.” Recognize that when it comes to human diversity — including the diversity of minds — “normal” is a highly subjective, culturally-constructed fiction. Recognize that there is no “normal” mind, and that conformity to the local conception of “normal” is in no way synonymous with health, well-being, or personal fulfillment – and is, in fact, often in direct conflict with those things. A healthy, thriving autistic person looks very different from a healthy, thriving non-autistic person. In nurturing the development of autistic individuals, the goal of parents, educators, therapists, etc. should be to produce healthy, thriving, autistic people, rather than autistic people trained to stifle their true selves in order to pass as “normal.” – Nick Walker, autistic educator and martial arts instructor, as quoted on the Neurotribes blog.

In our journey to understand how my oldest son Auden experiences the world, I’ve read extensively in the past year or so.  There are a some books and articles that influenced my understanding or my way of looking at Auden’s future, and I wanted to share a few of them with you here.  The pieces that most resonate with me are the ones that recognize that normal is all a matter of perspective.  As a follow up to my Autism Awareness Month post, Neurotypical, I thought I would give the new Nat’s Nibbles format a try again.  The Jennifer Berman shirt depicted below right was given to me by my sister, and it still makes me laugh whenever I wear it.  I don’t know anyone who thinks their parents are completely normal.  What makes you think you’re any different?!

Easy reads

The autobiographical book Look Me In the Eye by John Elder Robinson is a terrific read by a man who only became aware of his Aspbergers in his early 40s.  The book chronicles his early life and challenges as he tries to make sense of a world where he doesn’t easily fit in.  It’s well written, funny, and poignant.

Jodi Picoult’s bestseller House Rules is a novel whose main character is a boy with Aspbergers.  Each chapter is written from the point of view of a different character, and it was really well done.  I felt I had a much better understanding of an Aspie view of the world, and some good reminders about how parents need to care for the siblings in the case where one child demands  more than the others.

I am currently in the midst of reading Jess Saperstein’s Atypical: Life with Aspberger’s in 20 chapters.  The author is still in his early 20s, and he describes his experience of coping with some of his ways of thinking and behaving while living in a neurotypical world.  His level of candor causes me some worry and discomfort when I think about my own son’s future, but it’s still better to understand than not …

Autism Spectrum Disorder (ASD) in the news

1:38

Last year I read an interesting NPR article about autism spectrum disorders (ASDs) about a prevalence study that was conducted in South Korea.  In the US, the way that that the prevalence of these disorders is estimated is based on medical records.  In other words, it constructs an estimation based on individuals that have already been diagnosed or are seeking some sort of medical intervention.  But in South Korea everyone attends public school, and using the standard diagnostic criteria of the DSM (The Diagnostic and Statistical Manual of Mental Disorders) they were able to evaluate all the children across multiple school districts.  The study finds that 1 in 38 children are on the autism spectrum.  What’s really astounding to me about that is it means (if true) that two-thirds of the kids with ASDs in the US are not being diagnosed.

Some of the Q&A (much of it parents calling in) was great too.  One of the questions was about the vaccination schedule in South Korea, which is the same as the one we use in the US.  Many parents spoke about the challenges for young children not having good social reciprocity, and the bullying and other challenges that they face with their peers as they move into early adulthood.  It’s a tough story, but definitely worth it,  Here is the abstract of the complete article in the American Journal of Psychiatry if you’re interested.

Social neuroscience

There is an emergent field called social neuroscience, which is working to make the connect between our growing understanding of the brain and what we have learned about human behavior from in the social sciences.  One of my favorite bloggers is Jonah Lehrer, who writes at the intersection of these fields.  In a recent blog post called Thinking Smarter About People Who Think Differently, he posted an interview with Steve Silberman, which really resonated with me:

[quote]The most provocative thing about Nilli Lavie’s new study is that it shows that one of these gifts — the ability to take in high amounts of visual information at any one time — is not limited to savants, but is a feature of the characteristic ways that autistic brains process information. The study suggests that we’re looking at autistic savants the wrong way — instead of being “the rarest of the rare,” they’re representative of an autistic cognitive style that can be superior to that of neurotypicals in some ways. It’s time to talk less about autistic deficits and extraordinary savants, and more about the strengths of atypical cognitive styles like autism.

By continuing to think about autism as a disease in search of a cure instead of a disability that deserves support, services, accomodations, and highly creative research into education and assistive technology, we’re a society in denial. The new CDC report saying that one in 88 children is autistic should be a wake-up call to the fact that we’re currently offering very few resources to these folks once they become adults. Instead of asking “How can we cure autism?” we should be asking, “How can we ensure that millions of autistic people lead happy and healthy lives?”[/quote]

Lehrer has also written a few other posts on this topic, including a recent piece called The Upside of Autism on the Wall Street Journal site.

Over-diagnosis

There is a growing concern that ASDs are being over diagnosed, and also some strong indication that the American Psychiatric Association is going to revise the diagnostic manual (DSM) as it regards ASDs.

[quote]The biggest single problem with the diagnostic criteria applied to me is this: You can be highly perceptive with regard to social interaction, as a child or adolescent, and still be a spectacular social failure. This is particularly true if you’re bad at sports or nervous or weird-looking. – from a New York Times op-ed post by Benjamin Nugent [/quote]

Steve Silberman (blogger at Neurotribes) endeavored to tackle this question in an article in Wired magazine entitled The Geek Syndrome, about the growing prevalence of ASD-related diagnoses in Silicon Valley.

Well-known people on the Autism Spectrum

There are numerous sites which explore the question of which famous people may have had Aspbergers Syndrome, including this one.  Some of the names that come up repeatedly are Albert Einstein and Bill Gates, among others.  But what is more interesting to me is people who are known to be on the Spectrum, and who are writing and speaking in the public domain about their experiences, most notably John Elder Robison and Temple Grandin.

Interview with John Elder Robison, author of Look Me in the Eye (one of the books I recommended above).

[quote]By now, I can make pretty good judgments about what people are feeling toward me. But it takes a lot of energy. Ultimately, I can only make a logical determination. But the mom can look at somebody who’s angry and feel his anger and pain. I look at the person who’s angry and it’s a kind of dispassionate, detached process. I think, “Hm, he’s angry — I wonder why?” I don’t feel it. So that causes me to not be able to respond appropriately in some situations. Frankly, it still causes a great deal of stress for me.

People would say “Look at me, John,” and I believed I was fully complying with that request. Of course, in the opinion of other people, I wasn’t complying at all. But I had no way to know that. So that’s an example of how diagnostic knowledge can be tremendously empowering. You really have no potential to have a good life if there’s some fundamental difference between you and everyone else and you don’t understand what it is. There’s no way you’re going to integrate yourself with everyone else in ignorance.[/quote]

Temple Grandin was the subject of Oliver Sack’s essay An Anthropologist on Mars.  She has since written numerous books of her own, and been the subject of a movie.

An expert overview

Dr. James Coplan is the pediatric neurodevelopmental psychologist that evaluated Auden for us.  I found his book extremely helpful in understanding the autism spectrum and what we could expect with / for Auden over time, the reason for the growing number of diagnoses, and the kinds of things we could to do help Auden be successful.

Other moms

The blog post that most influenced my desire to write a blog post about our experiences is not a regular blogger about autism.  Sandy blogs about beadwork and her family, and I just happen to follow her in my RSS reader.  Her post about ASD (Autism Spectrum Disorder) on the eve of World Autism Day resonated with me and inspired me to write as well.  The Neurotribes blog post linked above provides links to numerous others who blog regularly on the topic, including:

• http://autistichoya.blogspot.com/
• http://www.Squidalicious.com/
• http://lizditz.typepad.com/i_speak_of_dreams/
• http://www.journeyswithautism.com/
• http://www.wrongplanet.net/
• http://juststimming.wordpress.com

I am sure there are many more that I have not yet come across.  I’d love to hear about your recommended reading (including favorite blogs) in the comments!