Autism and Neurodiversity

Coming to Terms with Autism and Neurodiversity
by Julie Widman
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The moment I learned my son had a disability is seared into my memory. My husband told me over the phone that our son was going to be given a label of either mentally retarded or autistic after an in-home evaluation conducted by our regional center. We knew that our son had a significant speech delay, but no one—not doctors, teachers, or day care providers—had suggested he had a serious problem before this. The shock that I experienced with this revelation was followed quickly by denial and then anger.We had begun to be concerned about our son’s lack of language development sometime between ages 1 ½ and 2 ½, but were encouraged to wait and see by the previously mentioned professionals. Finally, a teacher who taught at a parent-participation preschool where my son and I had enrolled suggested on my first day in class that I have him evaluated by the regional center. She had observed his limited language and his meltdown on the playground, and told me “My son had a speech delay, and I wish I would have gotten him help sooner. It really hurt his self-esteem.”
But a speech delay was one thing, a developmental disorder was another. I thought, how could this be? My happy, affectionate, bright son? The one who was counting to 10 at age 1, who loved to snuggle, and whose smile and enthusiasm captivated children and adults? It didn’t seem possible. My second reaction, coming within seconds, was anger and defiance. “So what if he’s retarded! So what if he’s autistic!” I remember telling my husband. “Does it really change who he is or how we feel about him?” My third reaction, and the one that has persisted in some form to this day, was anxiety: If this was true, what did it mean for his future? And would I be up to the challenges of parenting such a child?

I am someone who normally does pretty well with ambiguity and complexity, but this situation bewildered me. Even after we learned a few weeks later that my son was receiving an educational (as opposed to medical) diagnosis of autism spectrum disorder, and was therefore eligible to receive intensive in-home therapeutic services until he turned three to help overcome his significant measured delays, I did not know what to think or believe. Of course, we gratefully, if anxiously, accepted those services, and our transformations began.

I say “our transformations,” because the diagnosis of autism is usually a bigger adjustment for the family than for the child, who is typically too young to realize that there is anything different about him or her. As for myself, I quickly realized that I needed to learn as much as I could about autism, because what I thought I knew about it didn’t fit what I saw in my son.

My limited knowledge of autism frightened me: I had heard about children who would scream all day, refuse affection, and injure themselves. I also knew that people with Asperger’s Syndrome (which is now considered part of the autism spectrum and not a separate syndrome) were often highly intelligent and verbal, but extremely awkward socially, and that our area had more than the average share of t “aspies,” probably due to the technology industries in which they often find employment. I knew that even some people considered “classically autistic” possessed special, genius-level skills, like the character in the movie Rain Man.

None of these characterizations seemed to fit my son, though if I had known more about autism when he was younger, I might have noticed some red flags even before his speech delay became obvious. As a newborn, he was extremely fussy, cried a lot, and wanted to be held and bounced constantly. When he was a few months old, I finally realized he might have gastro-esophageal reflux, which was giving him frequent heartburn, and I got some medication to treat it from my pediatrician. Almost immediately he became a much happier baby. I’ve since learned that reflux and other gastro-intestinal problems seem to be correlated in many cases with autism, as do sensory integration difficulties. My son’s demands to be held and bounced, and his enjoyment even now of snuggling and deep pressure, are some of the manifestations of his autism.

But after he was no longer suffering from the reflux, my son was a delightful and mostly easy baby—which I did not associate with autism. I remember my husband occasionally worrying out loud that our son might be autistic and dismissing his concerns with irritation. “He’s so social and happy, he can’t be autistic!” I would say.

Now that I know a bit more, I know that autism exists on a wide spectrum, and that no two people with it are exactly alike. There is a saying that “If you’ve met one child with autism, you’ve met one child with autism,” and I’ve certainly found this to be true, now that I’ve met many of them. It’s also important to note that there is still a lot more unknown about autism than known. The Nobel Laureate scientist Eric Kandel has said, “If we can understand autism, we can understand the brain,” which the writer Andrew Solomon interprets as “a generous way of saying that we will understand autism only when we understand the brain” (Solomon, 2012, p. 221).

But we have the label “autism spectrum disorder” for a reason, so I think it’s important to briefly state what determines the diagnosis. The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; American Psychiatric Association, 2013) which is the latest version of the manual used by American clinicians, describes two main symptoms of autism: 1) persistent deficits in social communication and social interaction across multiple contexts, and 2) restricted, repetitive patterns of behavior, interests, or activities.

The idea of an autism spectrum is recent, and even what was previously known as “classic” autism has only existed as a concept since the early 1940s, when the American physician Leo Kanner first proposed it in a paper. The first DSM, published in 1952, didn’t list autism as a separate diagnosis, but only as descriptor of schizophrenia symptoms. It was not until 1980, in the DSM-III, that autism became an official diagnosis, and of course the prevalence of autism and autism spectrum disorders has increased exponentially since then. The most recent figures were released in March of this year by the Centers for Disease Control. With a prevalence rate for autism among U.S. children now 1 in 68 (among boys, it’s 1 in 42), we probably all know at least one person with this diagnosis.

How much of this increased prevalence is due to more autism, or just to more diagnosis, is a really interesting question that the constantly shifting diagnostic criteria have made it hard to answer. But I don’t believe it’s accurate or helpful to think of autism as an epidemic that is in desperate need of a cure, or to characterize all autistic individuals as a huge burden on society and source of stress on families. There is a more balanced perspective to take.

As I said before, every autistic child, and every autistic person, is different. My autistic child is a far greater source of joy and pride to me than of concern or sorrow. Here are some of the ways he (now almost seven) doesn’t fit the some of the generalizations and stereotypes that exist about autism:

• He is socially oriented and has been interested in other people, especially children, since he was a baby. I’ve seen him approach unknown kids in the park to play.

• He is very affectionate—he loves hugs—and he’s kind to other people. His “niceness” has been commented on by many people, kids and adults, and he has gotten student of the month for the last two years for the attribute of “caring.”

• He is very sensitive. He picks up on unkindness from others, and his feelings can get hurt easily. He has shown empathy toward other kids, noticing, for example, when a kid is afraid of another even when nothing has been said.

• His interests, while they can be intense, do change and evolve. He’s been into everything from superheroes, dinosaurs, Star Wars, and Lego video games in the past year.

• Although he likes routines and schedules, he also usually deals pretty well with change and surprises (especially surprises of the happy kind).

• According to his teachers and other specialists who monitor him, he is doing well, even with his challenges, in the achievement-oriented public school where he is now attending a regular first grade class, but he doesn’t seem to be a savant in any particular area.

My difficulty of reconciling the strengths I saw in my child with the label of autism, which is defined as a pervasive and lifelong developmental disorder, led to me search for other ways of viewing this condition. One book in particular by educator and author Thomas Armstrong was especially enlightening to me. The Power of Neurodiversity, subtitled Unleashing the Advantages of Your Differently Wired Brain (2010), asserts the startling view that the natural diversity of human brains represented by labels such as autism should be celebrated rather than pathologized.

I think that this view is startling, because the conditions explored in this book—ADHD, autism, dyslexia, mood and anxiety disorders, intellectual disabilities, and schizophrenia—clearly can be very disabling. Armstrong does not deny the difficulties that these conditions can cause both to those who have them and to their caregivers, or the importance of identifying and treating their symptoms appropriately, but he claims that an important part of alleviating the suffering caused by neurologically based mental disorders is to recognize the strengths, talents, aptitudes, and abilities of individuals with these conditions.

He asserts that an emphasis on the positive aspects of these conditions provides a balance to the overwhelmingly negative one promoted by our “disability culture.” Neurodiversity places the emphasis on differences, rather than disease, disorder, or disability, and is supported by research from brain science and evolutionary psychology, as well as from anthropology, sociology, and the humanities.
I recommend this book to anyone who would like to learn more about the upsides of any of the conditions Armstrong explores or about neurodiversity in general. (See the end of this article for information about this book and other recommended resources.)

Autistic individuals, parents, and others who are struggling with the challenges of the condition may well wonder then: What are the gifts of autism? Animal scientist and autism advocate, Temple Grandin, along with many others, notes in that that autistic individuals often excel at systematizing; they are detail-oriented and bottom-up thinkers. They often have better long-term memories than non-autistic people. They can focus intensely on their areas of interest and are persistent and determined in their efforts. Grandin makes the case that these strengths enable autistic people to make creative leaps because

…we don’t know where we’re going. We accumulate details without knowing what they mean and without necessarily attaching emotional significance to them. We seek connections among them without knowing where they’re taking us. We hope those associations will lead us to the big picture… but we don’t know where we will be until we arrive there. We expect surprises (2013, p. 131).

Even the relative social weaknesses of autism can be viewed as positives in a certain perspective. Autistic people are often very literal: they say what they mean and mean what they say. If you can overlook the bluntness with which they sometimes express themselves, you may learn to appreciate their honesty and integrity. And instead of characterizing autistic people as perseverative, one could instead describe them as passionate and original. A friend of mine once commented to me once that her son seems to get along very well with autistic kids like mine because he enjoys their enthusiasm. The intense interests of people on the spectrum can be baffling to those of us who don’t share them, but their delight in those interests can also be infectious.

What have autistic people contributed to humanity? Diagnosis cannot be done retrospectively, but some famous people who displayed many autistic traits include Albert Einstein, Isaac Newton, Charles Darwin, Thomas Jefferson, Emily Dickinson, Hans Christian Andersen, Wolfgang Amadeus Mozart, Michelangelo, and Pablo Picasso. Among famous living people, Bob Dylan and Bill Gates are suspected of being on the spectrum, and many more have gone public about their diagnoses as the understanding of autism has increased and the stigma has lessened. Just think how much our world would be diminished without the contributions of these people.

Getting back to my own story and my own experience: being the parent of an autistic child has been a gift to me as well. Understanding and accepting my children’s challenges has made me more accepting of my own. I am not autistic, but I do identify with many of the traits of autism, including (at times) social difficulties, trouble articulating my thoughts in spoken language, and difficulty with emotional self-regulation. I have not listed all the signs and symptoms of autism in this article, but if you are aware of them, I am sure there are some you identify with as well. I like to say that we are all on that spectrum somewhere.

What about the anxiety that I felt upon learning my child’s diagnosis, that has not yet entirely left me? I view it as a necessary product of being vigilant to how my son is doing and what he still needs to succeed. It is possible that when he gets older, he may lose the diagnosis, or he may not want to identify himself as being autistic (which is one of the reasons why I’ve not used his name in this article), but he will likely remain different from the norm and vulnerable to certain kinds of mistreatment. However, I still believe it is a blessing in some ways to know early on what your child’s challenges are likely to be, because they all will have challenges eventually.

The beauty of neurodiversity is that there is no such thing as a standard brain. As Armstrong puts it: “Diversity among brains is just as wonderfully enriching as biodiversity and the diversity among cultures and races” (2010, p. 3). I would like to see such acceptance of neurodiversity transform prevalent ideas about mental disorder and illness, and thereby help transform our world. Our autistic children—and all children and adults who have labels that can cause them to be stigmatized, set apart from the mainstream, and mistreated—deserve no less.

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Armstrong, T. (2010). The power of neurodiversity: Unleashing the power of your differently wired brain. Cambridge, MA: Da Capo Press.

Grandin, T. (2013). The autistic brain: Thinking across the spectrum. New York, NY: Houghton Mifflin Harcourt.

Solomon, A. (2012) Far from the tree: Parents, children, and the search for identity. New York, NY: Scribner.

Recommended Further Reading on Autism and Neurodiversity

• Excellent Wired magazine general overview: Neurodiversity Rewires Conventional Thinking about Brains

• Overview in Autism Asperger’s Digest written by an autistic psychologist that addresses the controversial aspects of this perspective: Neurodiversity: A Balanced Perspective

• Autistic disability rights activist Paula C. Durbin-Westby’s Autism Acceptance Day blog (see especially interviews with autistic adults)

• Disability Studies Quarterly issue on Autism and the Concept of Neurodiversity

• Books by Thomas Armstrong on neurodiversity and learning differences

• Books by Temple Grandin and John Elder Robison, two of the most well-known, successful autistic authors of memoirs and other nonfiction works on autism

 

 

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