3 weeks ago



Sally, Ann, and Danny

Sally, Ann, and Danny 119 “What we want to know is what tests can we do to see if the vaccination caused his autism?” “I don’t think there are any,” I reply, knowing that this answer will not satisfy. “What about urinary peptides or blood levels of proteins? Other research we have seen on the Net shows that kids with autism after the vaccination have abnormal levels of these chemicals.” “I would be interested in seeing those results. I find it hard to keep up with research that is only posted on various Websites. To me that could mean that the authors would prefer to not have their research scrutinized by members of the scientific community. That’s usually the minimum requirement for accepting as valid what people might claim to be true.” “That’s because most doctors don’t want to believe the research.” I sighed. This was going to be a long interview. * * * I see Joan and Dave and the triplets six months later. They have now had several months of intervention in a community child care setting with lots of extra support from people knowledgeable about autism. If the impairments in the children were transient or caused by something other than autism, one might expect that there would be a large improvement. I learn that the triplets have adapted well, they enjoy going to day care, are eager to get ready for school, and quickly participate in the activities. They do not need time to warm up but are at the sensory bins first thing. Sally is using her few words more communicatively, but the other two are still not talking. The difficulties in social interaction remain, and the preference for repetitive and solitary activity is still very strong. They are not really interacting with the other children in day care; they still love to watch videos; and Danny still jumps on the couch for hours at a time. I tell the parents that I think the triplets do in fact have autism. They take all this in stride. A few tears well up in Joan’s eyes, but she tells me she has already done her crying. Given the enormity of the predicament, I perhaps naively expected them to be more distraught, but of course they knew all along what was wrong with the children. Most parents are, in fact, devastated by the diagnosis and do their mourning in private, hopefully with the support of family and friends. It is parents who have trouble accepting the diagnosis, who do not mourn, who have the most difficult time moving on.

120 A MIND APART I ask Joan and Dave how they are handling the situation. They tell me that other people are worse off then they are—some children with autism are violent and aggressive, they tell me—and at least their kids are compliant and easy to handle. In some ways having three affected children is easier; one does not know any different. If you are prepared to deal with one child, you may as well be prepared to deal with others. Now that they know the diagnosis, they want to know how it is possible to have triplets with autism. Why is their family so special? * * * The search for a cause is a powerful drive for parents of children with ASD. One way we cope with tragedy is to try to find out why it befalls us. Parents will sometimes search relentlessly for a cause as it gives them a sense of control over the situation, but also perhaps because they have not fully accepted the diagnosis and all it entails. The general public has such a terrible image of autism that it makes acceptance hard. Most people in the community think of people with autism as violent, self-abusive, chronically dependent, and in need of institutionalizing in mental hospitals. Endlessly searching for a cause stems in part from a refusal to accept this picture, which is quite appropriate. But the diagnosis also entails an understanding of what we know about the causes of autism and what we consider to be evidence-based treatments. In some sense, not accepting the evidence base amounts to not accepting the diagnosis and all it entails. As mentioned in Chapter 7, this can be a real problem if it delays the start of effective early interventions. There is now good evidence that interventions that begin as early as possible can make a real difference to long-term outcomes; children with autism can improve, if not be cured. But it requires concerted effort and a determination to begin early and move on from trying to find a cause. I tried to explain to both sets of parents the current understanding of the causes of autism. The explanation doesn’t take long as we know so little and there are still large gaps in our knowledge. About ten percent of children with ASD have some other form of neurological disorder that disrupts the brain in a significant way. As a result, some children with diseases such as tuberous sclerosis or fragile-X syndrome also have autism as a secondary consequence of their neurological disability. Often such children are severely cognitively delayed with profound learning disability. In those cases, the autistic symptoms and behaviors are associated features rather than a primary concern. If a child is mute

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