Autism & Children

When I contacted Judy Barron to thank her for writing her book, There’s a Boy in Here, she was so kind to accept doing an interview for Autism & Children. It really helped to read that  I was not alone, that she too experienced with her son Sean the same problems I had with Matthieu – difficulties to reach him, to make him understand what is forbidden/dangerous, and so on.

If you could ask something to Judy, what would you ask?

Judy, you have written a book about your struggling to raise your son Sean on the autistic spectrum. What was the biggest challenge you faced when he was yet a child?

The worst thing was a total lack of information about autism and the belief held by doctors at that time that mothers were to blame. My husband and I were desperate for help but were treated with condescension and given wacky methods of coping – like forcing Sean to crawl like an infant to “retrain” his psyche. Another was a vitamin therapy regimen – he was expected to take a huge array of vitamins and supplements daily (34 pills at lunch time alone). At one point we had to undergo family therapy each week, a session during which the psychologist delved into my past (not my husband’s) to try and unearth why I was causing Sean to behave the way he did.

There were many years before Sean was diagnosed with autism. Knowing what you know now, do you think there are some things you would have done differently when he was still a child?

Certainly, had there been information at the time. We had no idea what we were dealing with until Sean was five and given the diagnosis of autism. But even then it was just a word, one which we had never heard before, and there was almost no literature about it available. Now, though, especially since we wrote our book and I learned for the first time what his behaviour really meant, I would not have minded saying the same things countless times until he could comprehend them. Also, I would have told him constantly that I loved him, that his behavior had no effect on that love.

What were the things you did with your husband that you feel really helped you reach to Sean, or helped him when he was growing up?

Talking endlessly. We explained cause and effect, why he could not throw anything he could pick up into the trees, why the three of us could not wear clothes of a particular color becasue he decreed we should, why he could not run in front of moving cars. Later, we talked about relationships – why it was inappropriate for him at age 14 to be in love with a 60-year old woman because she was kind to him, etc.

It seemed so pointless while we were doing it, but it turned out to be the opposite. He remembers it all now, even though it was impossible for him to act on it then, and what we said over the years turned out to be stored in his brain. He says that the very act of talking to him constantly made him feel connected, valued, and loved. I am astonished to this day that he has a wealth of knowledge acquired during the years when he seemed not to be taking anything in.

Also, perhaps most importantly, we refused to let him self-hypnotize – we interrupted his repetitive behaviors. Many people are opposed to doing so, but it clearly worked for us. Every time he began switching lights on and off, on and off, we stopped him because we could see him disappearing inside himself. He hated it when we interfered but we kept at it, out of instinct, really, despite his raging at us. He now agrees that he was trying to make the outside world go away and that had we not stopped him, he feels that he might have been lost.

Has there been something which should have been hard while raising a child on the autism spectrum, that instead went really easy with Sean?

Yes, toilet training was a breeze.

Nowadays, autism is diagnosed earlier. Do you have any tips to give to “new” autism moms?

Patience and more patience.

Here in France, ABA is not mainstream and many psychiatrists still tell mothers that their child’s autism is their fault or press them to use packing. How do you feel about what is available today to those dealing with autism in your country?

This is a huge country, so the services provided to autists and their families vary widely from one part to another. On the edges – the west and east coasts, there are many progressive services available and general knowledge is widely disseminated. In other places, however, many in the medical community are still mis-diagnosing and uninformed, the educational opportunities poor or non-existent.

A few years ago I received a letter from a woman who lives in Oklahoma, the mother of a 21-year old man with autism; she had been taken to jail because it was felt that her son’s abberant behavior was the result of her neglect and abuse.

The most enlightened care of kids with autism I’ve seen is in Iceland, where the school-age children are in a small building beside the regular school, where they attend whatever class or classes they can handle. There is a teacher and an aide for every two kids, there are art projects on all the walls, the kids each cook lunch one day a week for everyone, and the staff clearly love their students and are overtly affectionate with them.

Do you have a word of comfort for us struggling moms?

Learn from your child – something I wish I had done better when Sean was small. No one knows what is inside the head of a person who cannot communicate typically, but in my experience there is a real interior life of great value, no matter how hard it is to discern.

Judy Barron wrote, with the help of her son Sean, a very enlightening book about their journey: There’s a Boy in Here. Sean Barron also co-authored with Dr. Temple Grandin The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism.