Making Sense of an Autism Diagnosis

What the heck is autism anyway?

child looking into space
My son Diego at 10

Remember when autism used to be the rarest of conditions? When it would conjure up either Rain Man or the one autistic person you’d ever met in your life? For me, it was the boy at the beach who walked around twirling a short wire right in front of his face.

Now we have Autism Spectrum Disorder (ASD). Those affected include Elizabeth Bonker, the class valedictorian who delivered her college’s commencement speech. She’s autistic and nonspeaking. We have Elon Musk, the richest man on the planet no less.  Then there are all those individuals each of us knows directly.

For me, these include my 28-year-old son Diego.

Three decades ago, it was generally agreed that curing autism was the ultimate goal and that people were not autistic. They had -or were diagnosed with -autism  

Much has changed when it comes to labels and attitudes about whatever it is “autism” is, how it is experienced and how society ought to view it.

To some extent, the opinions have become polarizing, political even. There are sides and it feels like one must espouse one of the other. Is it “nonspeaking” or “nonverbal”? Does Asperger’s exist? Must we discard the puzzle piece and embrace the infinity symbol? Is people-first language passee?

Is autism no longer a disability?

What the heck is autism?

 It’s all very confusing, and I don’t like the conversation.

Changing Labels: A Short Autism Story

(This is the boring part of this article but it’s important if you want to understand the evolution of the labels. If you don’t, skip to the next subtitle.)

The term “autism” became significant to me 20-plus years ago when my son Diego was diagnosed.

We already lived in the United States, where the Diagnostic and Statistic Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), delineates what constitutes this or that mental disorder. The DSM was in its 4th version then, and Diego’s diagnosis of “Autistic Disorder” fell under the broader category of Pervasive Developmental Disorders (PDD).

The DSM-4 included five different PDDs. Three of these —Autistic Disorder, Pervasive Developmental Disorder-Not Otherwise Specified, and Asperger— were used for what we generally think of as autism or autism spectrum disorder, with Autistic Disorder being the most severe and Aspergers the mildest form of the disorder.

PDD and Asperger’s diagnoses were much preferred by parents and, it seemed to me, more often given by physicians. “My child does not have autism. He has PDD,” I recall a parent saying once. I knew how she felt. Autism felt tragic while PDD offered hope.

In 2013, the APA published version 5 of the DSM, which did away with the three PDDs and grouped them into Autism Spectrum Disorder (ASD).

What did this mean as far as labels go?

Almost everyone diagnosed with Aspergers, PDD-NOS and Autistic Disorder (or who would’ve been diagnosed with these labels had the DSM-5 not been published) now has ASD. Everyone is simply autistic -or, for those who subscribe to people-first language, a “person with autism” or “on the spectrum”.

There were other key changes to the autism classification.

Unlike the PDDs, ASD includes individuals whose symptoms were not apparent before the age of 3, and people who can “mask” their symptoms through learned strategies.

When giving a diagnosis, the DSM-5 recommends noting “severity level” based on social communication impairments and restricted, repetitive patterns of behavior, as follows:

  • Level 3: Requiring very substantial support
  • Level 2: Requiring substantial support
  • Level 1: Requiring support.

It also recommends indicating the following “Specifiers”:

  • With or without accompanying intellectual impairment.
  • With or without accompanying language impairment.
  • Associated with another neurodevelopmental, mental, or behavioral disorder
  • With catatonia
  • Associated with a known medical or genetic condition or environmental factor

According to the DSM-5, then, Diego’s diagnosis would be one of Autism Spectrum Disorder, Level 2, with intellectual impairment. In addition, while not part of the DSM criteria, Diego has serious learning disabilities, as well as motor planning and fine motor weaknesses.

I never give all these specifics though. And neither does anyone else when it comes to their own, or their loved ones, autism diagnosis.

As a result, unless you know the autistic individual, and know them pretty well, you can never know what their ASD looks like, or how it affects them and their loved ones.

An Autism Diagnosis Says Almost Nothing About a Person’s Needs

When John, an autistic person on LinkedIn, insists that autism is “difference, not disability,” can he speak for the autistic individual with a serious language and cognitive impairment who needs very substantial support?

Is it logical for John to condemn parents and professionals who view many individuals as disabled and needing the maximum amount of therapy and support they can get?

Can the parents of a verbal autistic teen with a 120 IQ know the experience of the parents of an autistic teen with a 55 IQ who has a repertoire of 12 words?

ASD presents in so many different ways that it doesn’t help to be dogmatic about how it is experienced. Also, saying that only autistic people can speak to the needs of all autistic people is counterproductive.

I know this: I will continue to advocate for Diego because (1) he needs me to do so, and, (2) he wants me to do so.

I also know I’m a better advocate for him than Elon Musk, no matter how smart, rich or successful he might be.

People-first Language?

When Diego was little, everyone advocated for people-first language, especially when it came to the A word. One could potentially forget people-first and say “He’s PDD,” but only those who didn’t know any better would say “He’s autistic.” When they did, others would either wince or, when inspired, explain all about how autism and disability didn’t define a person, how it had nothing to do with who they were.

For a long time, I bought into the people-first rationale all the way and held on to the notion that whatever my son had was separate from who he was. He would lose the diagnosis and its symptoms through all the therapy and alternative treatments he was getting.

I grew to accept Diego’s special needs as part of who he is. At this point, I celebrate many of his “autistic” characteristics. At times, I say that Diego has autism, or autism and an intellectual disability. However, for the most part, I just go with “my son’s autistic”, or “autistic and intellectually disabled”.

Funny story: I realized that, in Diego’s case, “people-first” sounded silly, forced, and even untrue when I was proofreading my younger son’s college application essay, where Andres referred to Diego as “my brother with autism”, and “my brother Diego, who has autism.”

My “autistic brother,” “my bother Diego, who’s autistic,” not only flowed better but also sounded more honest, especially since Andres was getting at what Diego’s autism meant to him. Otherwise, my “brother” or “older brother” would have done fine.

Language, people and labels change and evolve.

To some extent, “Autistic” has become an adjective that says something about an individual’s personality or behavioral profile. It’s a vague adjective, as adjectives are. “Rachel is young.” How young? “Luke is weak.” How weak? “Taylor is shy.” In what way? “Diego’s autistic.” How so? The adjectives give you some information about just one aspect of an individual.

It’s useless to get hung up on people-first vs identity language. It’s damaging to shame and judge those who disagree with us about what language to use.

I for one didn’t hear about the “nonspeaking” vs “nonverbal” debate until recently. To me, both mean the same thing: unable to communicate through oral language, that is, using your vocal cords to form words and sentences. Neither means “unable to communicate through any other means”.

But now some frown upon “nonverbal” because it supposedly means unable to communicate at all. I didn’t get the memo!

We are where we are in our journey and what feels right can and does change.

The Conversation Is Just Getting Started; Let’s Keep It Constructive

No one with an autism diagnosis changed when the diagnostic criteria changed. Diego continued to be Diego. His needs didn’t disappear because the classification changed.

A woman with an Asperger’s classification when she was a child might now label herself autistic. The new label didn’t suddenly entail more intense support needs.

A change in classification doesn’t turn a person from different to disabled or from disabled to different.

Just as we create labels for clusters of behaviors, we change the labels and the clusters of behaviors that make up such labels. Language is malleable. Language is limited too, especially for things we can’t understand well.

Heck, people with the cluster of symptoms we now call ASD surely existed before Leo Kanner first drew attention to them in 1943.

Thankfully, we’ve come a long way since “autism” (or whatever it was called or not called then) was considered an emotional disturbance or a reaction to “maternal deprivation”.

Is autism, then, a disability, difference, neurodiversity, identity, or just a human invention? Why must we say it’s this or that and nothing else?

Why must we be so quick to harshly judge those who relate to this or that symbol or label when things have changed so much, so fast? How about a bit more compassion, understanding and goodwill within the autism community and society as a whole?

This I believe: Every autistic person’s life is about more than autism, no matter how it is defined.

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