Autism

Neurodiversity & Early Intervention

 

 

All human brains are similar in structure and function; it is the microscopic variation in how they connect internally, synapse to synapse, that defines our individuality and what we consider to be our “self.” What we hold in our imaginations, what thoughts are triggered by our senses, that make us uniquely ourselves.

 

In this way, we are defined not by our genes, but by our brains. To be sure, genes play their part, influencing the way our brains are formed and how we behave, but they are highly responsive to our environment and experiences. Even while we are in the womb, genetics are being affected by the way in which our mother is responding to her environment. Is she anxious? If so, we are likely to arrive in the world with a predisposition toward anxiety, ourselves, not necessarily because of genes but because of the endocrine processes that influenced our experience as a foetus. Is she hungry? Nutritional deprivation in the mother can create a child whose metabolism is so efficient that he or she can become obese far more easily than another child. The reason for this adaptation is that it enhances the likelihood that the offspring will thrive in the anticipated environment it is born. While the adaptation, called phenotypic plasticity, may be a manifestation of the human genome, our mothers experience was not.

 

We are all different, unique in small ways and large. These subtle distinctions among people in a population are sometimes described as “neurodiversity”. Neurodiversity is all about propensity and likelihood. The word seeks to embrace differences: intellectual strengths and weaknesses, various ways to respond to phenomenon, strong preferences, disparities in taste. It expresses the difference between me and my level of anxiety or happiness, for example, compared to you and your levels of anxiety or happiness.  In his 1987 book, Fears, Phobias and Rituals, Issac Marks likens the number of words in the English language that denote anxiety with the number of words the Inuit use for snow. Just as the Inuit encounter so much snow they have invented names for its many manifestations, we have done the same with our myriad representations of anxiety. The exact number of words that mean anxiety depends upon what you consider anxiety, of course. To give you some idea, Joseph LeDoux, a New York University neurologist who publishes extensively on emotions and the brain,  states in his 2017 book, Anxious, that there are three dozen English words that are synonyms or variants of “fear” and “anxiety”.

 

As anxiety is a significant feature in autism, let’s pause there for a moment. Freud saw some forms of anxiety as normal, manifested in  peculiarities or moods, while others were a source of mental illness,. Kierkegaard regarded it as both therapeutic and a sign of “some sort of disorder.” He writes that experiencing anxiety enhances one’s understanding of possibility and is part of a successful life.

 

It all depends on how much anxiety you have. It’s a spectrum, though not a linear one. I can be anxious about riding airplanes but not about riding horses. This makes no sense, nor does it show a degree, or depth, of overall anxiety that may or may not place me in the category of being an anxious person. If I have enough anxiety about a great variety of things, however, I might be considered an anxious person.

 

When might one’s anxiety require some kind of intervention? Perhaps Kierkegaard can tell us something there, too. LeDoux  acknowledges Kierkegaard’s belief that a well-adjusted person faces anxiety and moves ahead. In other words, anxiety isn’t pathological unless it stops you, limits you, keeps you managing your life successfully.  Maybe we should adopt the same notion.

 

We can look at depression in a similar way. Everybody gets depressed—how deep must a depression be before a person is considered ill with it? Those with serious, debilitating depression might get exasperated by those who say “I’m depressed” when what they really mean is that they are in a bad mood or disappointed or even just bored.  Of course, we know the difference between suicidal depression and someone who is having a bad day. But where is the point at which we can decide that a person who suffers a low mood on a regular basis is diagnosable as “depressed” or, to create a more global and apparently permanent description, that he is “a depressive”?

 

Fear, anxiety, low moods, even bouts of short-lived depression are perfectly normal. Would the notion of neurodiversity mean that even in their more extreme manifestations we must not seek to interfere with the progression of such conditions? Or would those of us who advocate we embrace a world that is accurately described as neurologically diverse understand that treating a person with anxiety or depression is not a judgement against, nor a damnation of, the people whose experiences of these conditions hinders them in life?

 

Now, I come to autism. Always to autism. Here is a word that has sometimes been used to mean a person who is “quirky”, who may be very focussed on a single subject to an extent that he or she finds it difficult to talk about anything else. This person—let’s say he is a teenager—may also have certain fears or anxieties. He may have lifestyle habits that differ from the norm. Perhaps he finds social situations awkward or confusing. Certain sounds, textures, lights, and levels of crowding may affect him. He may find school difficult, or find it hard to make friends. He could perhaps decide he is on the autistic spectrum. Or maybe his parents take him to a specialist and he gets a diagnosis of Aspergers Syndrome (back before the DSMV did away with the term).

 

This doesn’t mean the teenager has what I think of disability. The very dated word, disability, suggests “inability” and this person is not incapable of managing his life. He has some challenges but the scope of those challenges, however uncomfortable at times, may be balanced with other strengths that his particular, unique brain offers.

 

In his highly engaging and beautifully argued book, The Age of the Infovore, George Mason University economist Tyler Cowen suggests that autistic people who have a tendency to impose structure on data, may be at an advantage in today’s world with its increasing emphasis on information. He rightly states that there is a joy to organising information, whether you are autistic or not. He also argues that the notion that autism is necessarily an impairment is wrong. “There is a deeper approach that sets autistics into broader understanding of the human condition, namely as striving people who learn all sorts of wonderful things, know many kinds of joy, and experience tragedies large and small.” Who can argue with that? Just as Kierkegaard argued that experiencing anxiety was important in attaining success in life (“Whoever is educated by anxiety is educated by possibility”), Tyler argues that there are a great number of advantages for an individual with autism, and even more for society at large. His myriad examples of the way in which we have misunderstood neurodiversity, have prejudiced ourselves against a group of people, and have completely mischaracterised the way they think and feel, makes for stunning reading.

 

However, Tyler’s description of autism doesn’t entirely match that which I’ve experienced in my own life with my son, who was diagnosed at the age of three. My son had no language—verbal or otherwise. He did not respond to spoken language, not even his own name. He spun objects in front of his eyes and isolated himself. He was often unreachable, zoning out as though no one else was in the room. He cried a lot. He did not seem to be developing mentally or emotionally. He missed many significant developmental milestones. He was not “quirky”, in my view. He appeared to present something far more theatening to his future than an idiosyncratic brain function, or neurological difference. He seemed neurologically impaired, cognitively impaired.

 

There is no question that in my experience autism presents “a lot of problems and bad outcomes”, an expression that annoys thinkers like Tyler Cowen, who argue that understanding autism as a disorder is fundamentally misleading. Tyler writes, “If we define autism in terms of its problems, we will find it harder to understand how those problems come about, how to remedy them, and how to appreciate and build upon autistic strengths.” I cannot see the causal link between defining autism by its problems and preventing us from understanding, remedying, etc. I agree with him that defining autism by its problems creates an unfortunate social stigma and may demoralize parents and educators who would otherwise be willing to make an effort with their children with autism.  Too often, children with autism are excluded from schools, events, or social groups. My son was the one person in his Chinese language class in secondary school who was not invited on a trip to China. Why? Because they didn’t think they could ensure his safety—or so they said. He wasn’t invited and we didn’t argue. Why would I send my son to China with a group of people who didn’t want him there? You might wonder how we explained to him why he could not go. Sadly, we didn’t need to. He’d always assumed he would not be invited.

 

This isn’t an unusual situation. People are often wary of someone with autism. While I am happy to report that there are a great number of groups that  will include people like my son even though his is autistic, they will only do so as long as he can act like he is not autistic. That’s a bit of a trick. And Nick is considered “high functioning”. The reason we wanted him to go to China was because he speaks Mandarin. What chance would someone whose condition presents a more complicated picture? Who couldn’t speak at all? Tyler Cowen knows the answer, I’m afraid. As long as we “define autism in terms of impairments or failed outcomes” we end up using the “hammer of science to brand a group of people as ‘inferior’ as a preordained social consensus.”

 

He’s right. But these impairments are very serious. I would paint a very distorted picture if I only spoke of  the teenager with Aspergers who may find certain aspects of life difficult, but whose overall condition may be just as “normal” as any neurotypical person, if indeed we can use the term neurotypical.

 

There is also the autistic person who manifests more traits on the spectrum, including many of the complex ones associated with social and communication impairments and cognitive problems. The “autistic spectrum” is often presented in a linear manner, with the teenager being described as “very high functioning” while the second person is lower down the line. However, the spectrum charted in this linear fashion is not accurate.

 

Remember my description of anxiety—a person can be anxious about riding planes but not about riding horses. A person can be anxious about work but not about their appearance. These are trivial examples of manifestations of anxiety that may have real consequences in a person’s life, but do not render them generally anxious. Nor could we say which person is more anxious—the one worried about work or the one worried about planes.

 

Autism is much the same. We meet people with certain traits and others with very different traits. As Steve Shore of Sonrise program has said, “When you’ve met one autistic person, you’ve met one autistic person.” It is difficult to generalise. Even Temple Grandin, who famously described all autistic people as thinking in pictures, has retracted this generalisation, along with many others.

 

Tyler Cowen does a great job of showing the strengths of autistic people as thinkers and contributors to society, as well as the need to embrace neurodiversity. “Please do not talk about autism as if it is a broken arm, a defect to be repaired or destroyed and nothing but a plague upon the world,” he writes. I have been guilty of describing autism in exactly this way, seeing the manifestation of autism in my son whose development was arrested at an early age and who, by all appearances, was unable to learn. I saw autism as an impairment because it appeared to be so. Why couldn’t my son speak? Autism. Why wouldn’t he play with toys? Autism. Why didn’t he respond to any spoken or non-verbal language, even his own name? Autism. Why did he spin, rock, “self-stim” and disappear? Autism. It was hard not to see it as an impairment. When every other three-year old is speaking to their parents in sentences and you can’t get your son to notice you in a room, it certainly feels like an impairment.

 

For me, his lack of development was also a call to action. We embarked upon an intensive intervention of him because we couldn’t imagine his future if we did not. If we dared hope he might develop into an independent adult, it required us to teach him all the things he appeared unable to learn on his own—like language and communication, like play and physical activities (throwing a ball, jumping on a trampoline). Otherwise, he lied on at the carpet and moved trains or cars in front of his eyes. Should we have done nothing, instead, as an indication that we accepted him just as he was?

 

I don’t think so. When Tyler talks about those on the spectrum who have been described by researchers as having  weak executive function or “weak central coherence” as a subsection of a much larger group of autistic people, I recognise my son as part of that subsection. Had I not imposed upon him the incredibly intensive, exciting, demanding, exhausting education that helped him learn language and play and music and social skills, I think we’d be in a very different place right now. Or rather, he would be.

 

Can I both embrace autism as a “difference” while doing everything I can to lessen its negative aspects?  Maybe not. But it seemed to me that my son was entitled to an education and therefore I provided it. To decide not to intervene would have been  as much a manifestation of my own prejudices and assumptions as was the provision of an early education that gave him an opportunity of him to learn what “neurotypical” children learn. If there was a means by which I could enhance his language skills, why wouldn’t I intervene, and urgently, too?

 

So, how do I reconcile these two thing: embracing autism while simultaneously identifying what I judge as deficits and addressing them in the most positive, affirming way I can?

 

I’m not sure I have an answer other than to point out the obvious: that my son is not a thing, but a dynamic, living, evolving person. The phrase, “accept him as he is” assumes that he is a static being.

 

He has surprised us at every turn, not only in demonstrating an aptititude for learning that far surpassed anything we could have imagined at the time of his diagnosis, but by bringing into our lives his passions and enthusiasms, and for showing us that almost everything we once imagined about what it means to be autistic is wrong. Strangely enough, he and I still talk about language every day–how do you say, “I want to go to the museum” in Arabic, I ask him. “Can you look at this for me?” I say to him. “It’s in French and I cannot understand.”

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