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Autism: The Last Human Rights Movement

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In York, Pennsylvania, a minor controversy recently arose when a local autism parents' group funded several area billboards that pronounced, "If 1 in 150 American children were kidnapped, we'd have a national emergency," which was followed by, "We do. Autism." Though well-intended, equating kidnapping with autism drew the attention of disability rights activists who advised that "the billboard reinforces the stereotype that all people [with autism] are trapped and helpless." Ari Ne'eman, president of the Autism Self-Advocacy Network, said, "It seems to send a message that we aren't fully present in our own bodies," and, indeed, it was at Ne'eman's urging that the parents' group hastily withdrew the billboards, which Ne'eman acknowledged as "indicative of the growing recognition of the need for the autism parent community to pay attention to the concerns of the autistic self-advocate community."

Certain autism organizations have manipulated the current autism rates, as cited on the Pennsylvania billboards, to suggest that every 20 minutes a child is diagnosed with autism. Whether that's shock-tactic hyperbole or not, the truth is that autism has no single known cause, no cure, and shows no signs of abating -- and it's happening worldwide. But one thing's for sure: children grow up. Quickly. And the every-20-minute kids will soon be teenagers and young adults. I should know -- as an adult on the autism spectrum with Asperger's Syndrome I was one of them. And, as Mr. Ne'eman advises, it is high time we pay attention. But to what exactly?

In accordance with the growing numbers of Americans on the autism spectrum (1.5 million and counting) there lies before us an opportunity for unlimited possibilities if we conjoin in a partnership that decrees "we are all more alike than different." Where others have given rise to a multi-billion dollar industry that seductively promises to recover, remediate, and cure autism, still others are imploring acceptance. I, myself, have learned self-advocacy the hard way and am now holding people accountable for their offensive missteps: from the professional who misspells "Asperger's" as "Asberger's" one too many times to the brochure announcing my conference heralded with a prominent puzzle-piece graphic (universal shorthand for autism), it matters to me and I will not be silent. Foregoing popular consensus, I reject the puzzle piece. In my opinion, it is equable with "having a screw loose" or "not playing with a full deck" in that it presupposes vital pieces are absent in order to make someone whole and complete. (And I am requesting sensitivity for this in the same manner that a black-face caricature would never advertise an African-American speaker.)

People with autism may have to work a lot harder at integrating with bodies that feel like lead, but it's no different for someone compromised by cerebral palsy or struggling with the aftereffects of stroke. This is why speech may be delayed, or not come at all. Or why processing physical or intellectual requests may take a lot longer. But, regardless of what any superfluous IQ score dictates, they're in there: intelligent, aware, and fully competent, on par with each individual's chronological age or above. People with autism are incapacitated only by the limits imposed upon them by others. Challenge their intellect, don't stifle it with degrading curriculum and repetitive tasks -- and for God's sake, feed their brains! These are the citizens who will, within a few decades, outnumber everybody else. And the world needs more people possessed of great insights, extraordinary talents, and unique problem-solving logic.

My friend Jenn is enrolled in a matriculated Master's program -- the only nonverbal person with autism in the world to bear this distinction. My friend Michael doesn't speak but types independently, and blogs his incredibly rich observations about the world. And Christopher, though only 12, makes presentations (for which he is justly compensated) applying his own Asperger's experience to support others' understanding. This is just the beginning of a movement necessary to promote compassionate accommodations. The children diagnosed with autism today may always require some degree of physical assistance for living in a leaden shell, but that doesn't invalidate their entitlement to participate, contribute, and to simply be.

Within the past year, I generated a poll to people on the autism spectrum and received 30 replies from individuals across the country that ranged in age from seven to their mid-60s. One of the questions I asked pertained to the message they wished to convey to others who are not diagnosed and are considered "normal." Without exception, the responses were consistent: we want to be acknowledged, heard, valued, believed, and accepted. The time has come, then, for us to enter into new dialogues about working with others instead of on them; adapting instead of fixing; including instead of segregating; and not merely tolerating but accepting. This agenda is not dissimilar from those advanced by women's rights, civil rights, physical-disability rights, and gay rights activists in years prior, and Ari Ne'eman's the closest thing autism's got to Rosa Parks. We're not asking for the moon, only to fulfill an essential human need. After all, isn't the desire to be accepted all that any one of us truly wants? People with autism deserve to be valued as people first, not as anomalies that are all too often judged a third-class caste.

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