Try digitalPLUS for 10 days for only $0.99

Op-Eds

News Opinion Op-Eds

'Autism is not disability'

April is National Autism Awareness Month, which naturally raises the question: awareness of what?

As a parent of a 19-year old son with autism, if you had asked me that question years ago, I would have said things like, "Be aware that kids with autism can experience sensory overload" or "Be aware that creating teaching opportunities around an autistic child's interests can help him learn." Or, if I was meeting one of my son's teachers: "Be aware that if you leave that scented candle on your desk, it's going to have a perfect bite taken out of it within two minutes."

A few years ago, I asked Jamie Burke, a young man with autism, what he wanted people to understand. He replied in four words: "Autism is not disability." That idea, "autism is not disability," seems warm and fuzzy enough to put on a bumper sticker. The question is whether we are willing to believe it.

Even the definition of autism is loaded with words like "deficit," "disorder," "impaired" and "restricted." Can we really believe that autism is not disability? Can we offer people with autism the presumption that they are more intelligent than they might be able to demonstrate? Can we recognize that social interaction may be overwhelming, even if they desperately want friends?

The answer matters because the answer will define the quality of life, the opportunities and the dignity of the people we know with autism — including our own children.

When Jamie says "autism is not disability," he's saying that autism does not diminish a person as a human being. Autism awareness can't stop with a list of things that make people with autism different. Because what is essential is the constant awareness of what makes us the same.

The founders of our country based our nation on a presumption — what they called a "proposition" — that all of us are created equal. When we look back on our history, the only points of true regret are those times when we forgot that all of us, regardless of our differences, and simply by virtue of our shared humanity, are created equal. That word "all" includes people with autism.

None of this is to minimize the challenges that a person with autism faces. Autism can affect every sense: sight, sound, smell, taste, touch, and even a few senses that we parents never heard of before an autism diagnosis, like proprioception and vestibular equilibrium.

Still, I'd like to suggest that autism is not a disorder of thinking or a lack of intelligence, that even people who look "severely autistic" to the eye are thinking, feeling, people. Their senses may be overwhelmed, their bodies may be disorganized or uncooperative, but their minds are far more competent than we previously thought. As we discover more people with autism who eventually develop speech or other ways to communicate, we hear the same thing again and again: "I'm smart. Tell people."

As one of the largest private funders of autism research in the country, I'll tell you a secret. Science has not developed the ability to read the minds of people with autism, or to measure the empathy in their hearts. When we give a person with autism a test that relies on their ability to speak or move accurately, we may just be testing their ability to overcome features of autism that have little to do with intelligence.

So our responsibility is to presume that people with autism are competent, and then go about looking for ways to help them demonstrate it. If you're a parent, tell your child what's going on in the family, in the world — all the interesting things that you would share with another child. Hold up your end of the conversation even if they don't hold up theirs. Create teaching opportunities out of their own interests. Give them the dignity to be embraced as ordinary, more often than they are excluded as special. Teach them and read to them even without needing a test at the end. Assume that they listen; that they appreciate; that they love, while we keep looking for ways for their mouths or their hands to tell us.

And then love them back. Not for who they might have been without autism, or for who they might be if they were "cured," but as people who need to be nothing other than who they are, to be loved and accepted.

Because when we do that, we open the door for them to share a meaningful life with us, without having to take an admission test. We start seeing the gifts of people with autism, not the limitations. We start to think less in terms of disability and more in terms of humanity. And not least, we sometimes find that the things we like most about ourselves are there because a person with autism is also there.

John P. Hussman, an Ellicott City resident and director of the Hussman Foundation, has helped establish the Hussman Center for Adults with Autism at Towson University and the Hussman Institute for Human Genomics at the University of Miami. His email is hussman@hussmanfoundation.org.

  • Text NEWS to 70701 to get Baltimore Sun local news text alerts
  • Copyright © 2015, The Baltimore Sun
    Related Content
    • Strength through 'disability'

      In response to the recent commentary on autism ("'Autism is not disability,'" April 11), I would observe that perhaps we are all disabled in one way or another, or else none of us is. I think we all, are and often in disability lies strength.

    • The false god of politics

      The false god of politics

      If you visit Mount Olympus, you will see scores of crumbling statues to false gods once worshipped by ancient Greeks. The same is true in Rome, where statues of political gods, notably those named Caesar, lay in ruins.

    • Pharmacy deserts and the myth of accessible medications

      Pharmacy deserts and the myth of accessible medications

      More than two-weeks after protests erupted in Baltimore surrounding the death of Freddie Gray, many pharmacies in inner-city Baltimore remained closed or were operating under limited hours, disrupting access to essential medications for many residents; three of them are still closed today. People,...

    • We must redouble our efforts now that the Freddie Gray cameras are gone

      We must redouble our efforts now that the Freddie Gray cameras are gone

      When Baltimore burned during the recent uprising, there were news cameras everywhere to document the mayhem and rage. As pastor of the only church whose property was torched during the chaos — housing we were building to redress systemic inequities and to revitalize blighted communities was destroyed...

    • Men, their sons and their lawns

      Men, their sons and their lawns

      Along with eye color and a knack for rolling your tongue, an obsession with the grass around your house is hereditary, I have learned. It is also, apparently, a sex-linked gene, because no little girl has ever been born wanting to mow the lawn.

    • Gag order request in Freddie Gray case shows prosecutor's misunderstanding

      Gag order request in Freddie Gray case shows prosecutor's misunderstanding

      The searing spotlight of media scrutiny fell upon a Maryland state's attorney, a rising star in Democratic politics. After a high-profile beating death, the young prosecutor convened a news conference to announce murder charges, detail the evidence and insist that the public's desire for justice...

    • Jeb Bush has bigger problems than Iraq war stumble

      Jeb Bush has bigger problems than Iraq war stumble

      By now everyone has had their say about Jeb Bush's terrible, horrible, no good, very bad week. The consensus is that Mr. Bush misheard Megyn Kelly's "knowing what we know now" question about the Iraq war. I'm not convinced.

    • Gov. Hogan's funding games have consequences

      Gov. Hogan's funding games have consequences

      In the last few weeks we've heard much about the neglected and underdeveloped parts of Baltimore and how decades of degradation and neglect played a role in the recent social upheaval and civil unrest. Almost universally we've heard activists, experts and thought leaders tout education as a surefire...

    Comments
    Loading

    57°