Everything You Think You Know About Autism Is Wrong
Meet Ido (pronounced “Ee-doh”) Kedar, a 16-year old young man who has written about his journey from isolation to communication in Ido in Autismland: Climbing Out of Autism’s Silent Prison.
Autism is a painfully mysterious syndrome. We don’t know what causes it, although we do know that about 1 in 88 births will produce an autistic child. We know that it’s the fastest growing developmental disability in America, although we don’t know why. The commonly used treatments have limited effectiveness, so increasing numbers of adult autism sufferers cannot care for themselves, requiring costly life-long maintenance.
Part of autism’s mystery lies in the nature of the condition itself: in its most severe form, it leaves the autistic person entirely unable to communicate, either verbally or physically. It’s not just that someone with autism cannot speak. As most who have lived with or seen autism know, a child with serious autism seems entirely disconnected. Autistic children do not make eye contact and they don’t play. Instead, they flap their hands, roam around a room’s periphery, engage in endless repetitive activities, and seem locked away in their own world.
Some experts contend (erroneously, as it turns out) that autistic children dislike physical contact, cannot emote, and lack the capacity for loving. This seeming emotional isolation led the misogynistic Bruno Bettelheim to conclude that mothers caused autism when they (allegedly) withheld affection from their child. This wrongheaded theory inspired generations of loving mothers to suffer enormous guilt.
Even though Bettelheim has mercifully fallen by the wayside, non-verbal autism still contains many questions. This mystery is about to undergo a significant challenge, though, due to Ido (pronounced “Ee-doh”) Kedar, a 16-year old young man who has written about his journey from isolation to communication in Ido in Autismland: Climbing Out of Autism’s Silent Prison.
Full disclosure: I’ve known Ido for many years, which means that I can attest to the fact that he wrote every word in this book. The mature vocabulary, the sly sense of humor, and the thoughtfulness are all his. He displays these traits in every personal interaction.
The above disclosure is necessary, not just because readers should always know of relationships between author and reviewer, but also because those unfamiliar with non-verbal autism might believe that Ido’s parents or some well-meaning therapist wrote the book on his behalf. It would be easy to make this mistake. Ido presents as a very typical, non-verbal autistic teen: he’s tall, good-looking, and, except for his occasional sweet smiles, his face is usually expressionless. His is not merely a poker-face. It’s a face utterly free of the cues humans instinctively look for when meeting another person.
Ido’s speech — which he rarely uses — is limited to half-formed syllables. When he speaks, he produces about 40% of the sounds required for full communication, so he is intelligible only to those familiar with him. When a room gets too crowded or noisy, Ido’s hands start flapping wildly before his face in a movement known in autism circles as a “stim.” Sitting still is hard for him and he has a tendency to grab what he wants. If you ask Ido to pass a salt shaker to his mother, it might end up in his father’s hand. The following video is a good example of an autistic child’s random movements and stimming: