April 17, 2014

Autism Now: Robert MacNeil Shares Grandson Nick’s Story

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ROBERT MACNEIL: In recent years, the diagnosis of autism has shown startling growth, now affecting one in 110 American children. For over two decades, parents desperate for answers and feeling slighted by the medical community have helped force to create services for their children, raise money for research and campaign for wider awareness of autism and for support from the government.

Today the picture is changing. Researchers now believe there is no simple genetic cause, that autism may involve multiple genetic pathways, and toxic materials in the environment may trigger the symptoms of autism. Autism once was considered only a brain disorder. Now, more doctors say it often involves serious physical illness.

And that’s our first story tonight. Frankly, I have a personal motive in telling it, because it’s about my grandson Nick, who is 6 and lives in Cambridge, Mass.

It’s not easy connecting with Nick. We live in different cities. All my grandchildren are a little shy when we first meet again. But Nick’s shyness is different.

One of the marks of autism is difficulty making eye contact and communicating, even with family members.

I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story, until Nick, because he moves me deeply. Also because I think his story can help people understand his form of autism and help me understand it better.

This was Nick when he was 9 months old, a healthy, alert and engaged baby with no apparent medical problems. Now at 6, my grandson seems like a different child, showing the classic symptoms of autism, a disorder in development, his difficulty connecting. Nick struggles with language, the rigidity and resistance to change Nick shares with other children with autism.

“I think pain in a child with autism is a very difficult thing to assess because a child with autism can’t vocalize that. He will very often not come to you and say, ‘I’ve got a bellyache.’ He can’t use those words.” 

- Dr. Timothy Buie, Massachusetts General Hospital

NICK: Now go home.

ROBERT MACNEIL: A tendency to suddenly appear absent, to withdraw into an emotionally detached inner world of his own.

Those symptoms are characteristic of the autism spectrum — severe to mild — in Nick’s case, relatively mild. But beyond such mental difficulties, Nick has serious physical illness: in his digestive system, his mitochondria, the energy needed by his cells for normal activity, plus frequent small brain seizures, and extreme sensitivity to light and sound. How Nick was transformed from that healthy boy to Nick today is still devastating to his mother, my daughter Alison.

ALISON MACNEIL: When Nick was diagnosed, I actually hired a babysitter so that I could go sit in my car in a parking lot and cry because I couldn’t do it here with the kids.

ROBERT MACNEIL: Alison was trained as a psychiatric social worker, but like many parents, has made virtually a new career of caring for her son with autism.

ALISON MACNEIL: I remember one day I was sitting at the computer, and he was about 16 months old. And I caught out of the corner of my eye that he was spinning one of Neely’s doll’s plates. And I’d never seen a child play that way before — ever.

And I went in to interrupt him, and he wouldn’t stop. And there was an intensity about it. And I had this sinking feeling in the pit of my stomach, because I knew something was wrong.

ROBERT MACNEIL: That worry sent Alison to a developmental pediatrician who confirmed their fears: Nick had autism.

ALISON MACNEIL: Nick was irritable, crying, inconsolable and now is not on track developmentally at all. He’s gone backward.

So we went from a 15-month appointment where this child was A-OK, supposedly, and given the MMR, the DTaP and the Hib vaccines.

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