Sunday, April 28, 2013

Autism Awareness Month in Review

As Autism Awareness Month comes to a close this week, let’s review what we already know about autism.

1. A lot of kids have autism. Whether the statistics are the accepted 1 in 88 or the more recent 1 in 50 or the suspected even more prevalent numbers of children who have autism, the numbers are increasing rapidly from previous figures of one in hundreds or one in thousands. Moreover, the arguments as to whether the reasons for this startling increase may be better diagnosis or broader definitions of autism or more children actually affected by autism matter less than the reality that many families are dealing with autism.

2.  Despite the large numbers of children diagnosed with autism, research seems to bring us no closer to finding ways to prevent or treat autism. This week, the media reported three research report findings that have questionable usefulness in dealing with autism. One study looked at placentas and suggested that children with autism are born with placentas that have more folds in them than those of typical children, which could be an early marker for autism. However, the study is rather limited, looking only at a fairly small sample of placentas. Also, as Dr. Jonathan L. Hecht, associate professor of pathology at Harvard Medical School, noted, these folds could be the placenta’s way of responding to many kinds of stress, so they may not be specific enough to predict autism. Two other research reports in the news this week discussed developing drugs and vaccines for autism, both of which may be helpful to those currently dealing with autism. However, if drug companies can profit from autism drugs and vaccines, will there be incentive to find ways to prevent autism in the first place?

3. Early intervention is important. Obviously, addressing any issues as soon as they are discovered makes good sense. However, many parents have difficulty getting their children diagnosed early. We suspected that Alex had developmental delays at least a year before he was diagnosed with autism, and we shared our concerns with his pediatrician, who simply reassured us that boys develop more slowly. Would another year of intervention have made a difference? We will never know. Moreover, finding services for children with autism is a difficult task for parents. School districts, overwhelmed with the number of children with disabilities, tend to provide bare minimums when it comes to valuable services, such as speech therapy and occupational therapy. Private therapy is expensive, may not be covered by some insurance, and may not be readily available. Many private providers in our area have long waiting lists because so many children need services. Even if parents know their children have autism and actively seek help for them, they may not be able to get the critical early intervention.

4. Autism awareness is shifting to autism acceptance. Since many people know someone with autism, more people are aware of autism. In an earlier blog entry [March 17, 2013] “Should Autism Be Neither Seen Nor Heard?” I discussed incidents reported in the media where children with autism and their parents were treated badly in public situations. Certainly, people need to be understanding of children who cannot control their behavior at times and sympathetic to parents trying to help their children. This tolerance, however, is not the focus of autism acceptance. Rather, some parents of children with autism and adults with autism want not just understanding but celebrating of autism. This movement known as neurodiversity criticizes parents like us who want to make our children better through biomedical and therapeutic interventions. They claim that autism is part of the personality, and trying to eliminate behaviors is rejecting that child for who he/she is. Indeed, some parents write in their blogs that they don’t want to change a thing about their children with autism. Not surprisingly, I have noticed that these parents typically have very young children, and I wonder if they will feel the same when their children’s behaviors potentially escalate from “unique” to aggressive in adolescence. Nonetheless, those of us who have not accepted autism as a way of life for our children have dug deeper with testing that proves our children have medical issues, such as yeast overgrowth, food allergies, and heavy metal toxicity, that are making them physically ill. Because we love Alex unconditionally, we do not accept that illness is a natural state for him, and we suspect that his behavior is often influenced by how he physically feels. To ignore what the evidence shows would be negligent on our part; therefore, we continue to strive to make him as healthy as he can be. We accept Alex for who he is, but like all parents, we want him to have the best life possible, which is free of the obstacles autism has imposed upon him. Until we are content that he is healthy and happy, we will accept no less for him.

“And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!” Psalm 90:17


K. C. Wells said...

Excellent points, Pam. I am especially touched by your last two lines. xoxo

Pam Byrne said...

Thanks, K.C.--I appreciate your faithful support and kindness. Your friendship is a blessing!