Growing Old with Autism

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They told us the choice was ours: either more drugs or a transfer to another ward in the facility where the most dangerous and criminally inclined autistic adults were housed.

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My parents and I were desperate to find a well-run supported-living situation for Noah, but they're rare. When the state launched Community Care, numerous for-profit companies sprang up to house the developmentally disabled, each of whom is entitled to many thousands of dollars a year in state funding. The companies that have succeeded tend to work with higher-functioning autistic or developmentally disabled adults, those who pose little risk to themselves or others. Other companies are alleged to be providing inadequate care or even in some cases abusing clients. (See six tips for traveling with an autistic child.)

The risks of Community Care for families of the adult autistic or mentally challenged are numerous. Perhaps the greatest worry is that the state will cut the promised funding per client, leaving families to foot the bill. Institutions like Fairview, flawed though they sometimes are, are often necessary for care of the lowest-functioning or violently autistic. The seemingly benign term community care, when it is invoked by conservative state representatives in domed capitols, is too often a code word for budget-cutting. The concept of moving the autistic into loving group homes where they will be taught or looked after is Edenic but inadequate to society's needs. For the high-functioning, such assisted-living situations are a better alternative than institutionalization; for the low-functioning, the concept is often better than the reality. What happens if the supported-living home we find for Noah goes belly-up or loses its license or is just plain corrupt? Then where would Noah go? My parents simply can't care for him at home, nor could I.

And yet by 2005, my brother seemed almost in critical condition; we had no choice but to find yet another new place for Noah.

When I was writing my book about my brother, Boy Alone, I wished I had a story of hope and salvation. It is miracles that sell books. There seems to be an insatiable demand for narratives that end in triumph over an affliction: the cripple walks, the mute speaks, the autistic boy laughs and hugs and cries. We hunger for that uplifting journey, as opposed to the cruel odyssey I had to tell. What did I have to offer? My adult brother, still autistic, still nonverbal, still lost. As much as I hope that all the autistic boys and girls will get better, and as much as I can encourage their families to fight with all the hope they have, I also know that they will not all recover. The boy or girl will grow up, and there won't be a miracle; instead there will be an effort, something like what my family goes through every day, to figure out what to do.

We did, however, catch our own small break three years ago. Through the Westside Regional Center, my parents found out about Diverse Journeys, an assisted-living program willing to place Noah in a rented house in Los Angeles closer to my parents' home and therefore an easier commute for their weekly visits. Noah lives in a two-bedroom house with a roommate, a "normal" person, whose rent is partly subsidized in exchange for the attention she must pay to Noah when she is home. A rotating series of caregivers take Noah to the park or for walks or to fast-food restaurants during the day.

The program has made some real progress in weaning Noah from some of the medications he had been taking, cutting him down to two drugs from four. And the mysterious scars and bumps and bruises he was getting, what Fairview termed USIs, have largely ended. So far, Noah's assisted-living program represents a great improvement over Fairview, and my parents and I are thankful every day for this change in Noah's circumstances.

When Noah is happy, it is a stark, uncut ebullience, rising, as my father wrote in his first book about our family, A Child Called Noah, "from a deep, pure place." The joy emanates from him with such force that he will run toward me with his wide smile and rub his head against my shoulder in an almost feline gesture of pleasure. On days when Noah is in a good mood, when he is humming an up-tempo version of his melody of repeated, nonsensical syllables, we are again reminded that he is capable of great happiness.

Yet on some visits he is awful. He has good moods and bad moods. Just like me.

Is Noah happier in his new situation? Perhaps a little. He can never say.

Noah's condition persists, an immovable psychic object. As a family, we lived in the present, from crisis to crisis; my parents always mustering the energy for a response. My father is in his 80s now, my mother in her late 70s. They will go on as long as they can. Then I will try to step in.

Will I always be there for Noah, as my parents have been?

I wish I could say, Yes, definitely, I will be there.

But I honestly don't know.

Greenfeld is the author of Boy Alone: A Brother's Memoir (Harper), from which this article is adapted

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