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It’s Autism Awareness Month, in case you didn’t know. Much is being said about it and about the new numbers from the CDC. I’ve gone through everything I can find and here are links to some views and interpretations that I think best showcase the conversation…
What I would like to suggest is that if you love someone with autism or care about the enormous increase let’s ask IACC to count the true number. Once we know the actual number of those living with autism, the true number in a timely fashion, we can then ask for answers to questions such as Why? And what are we going to do about it? Hundreds of thousands of families need answers.
According to the C.D.C., what critics condemn as over-diagnosis is most likely the opposite. Twenty percent of the 8-year-olds the agency’s reviewers identified as having the traits of autism by reviewing their school and medical records had not received an actual diagnosis. The sharpest increases appeared among Hispanic and black children, who historically have been less likely to receive an autism diagnosis. In South Korea, a recent study found a prevalence rate of one in 38 children, and a study in England found autism at roughly the same rate — 1 percent — in adults as in children, implying that the condition had gone unidentified previously, rather than an actual increase in its incidence.
Science can resolve this dilemma, but the methods to examine this question as well as the answers will be complex. While it is never possible to go back in time, longitudinal population based studies and even careful retrospective studies can determine if more children are affected and if the nature of the disorder is changing over time. The changes in prevalence of other developmental disorders, measured with biomarkers (Type 1 diabetes) or emergency room visits (food allergies), appear to be true increases in the number of children affected. As diagnostic changes and ascertainment fail to explain the majority of the increase in autism prevalence, it seems prudent to assume that there are indeed more children affected and continue an aggressive search for causes while striving to improve detection, treatments, and services. Our working assumption is that there are both more children affected and more detected.
The CDC report concludes that although multiple factors influence the identification of children with ASD and differences in prevalence estimates across sites, the data provided in this report indicate the need for further exploration of possible associations between overall ASD prevalence and improved identification among children without intellectual disability, children in all racial/ethnic populations, and both males and females, including potential interactions between these factors.
So I say “thank you” for autism day! Thank you for a day that brings awareness to so many people across the globe. Thank you for a day I don’t have to break my own back to give out that awareness. Thank you for a day that may mean less stigma and more understanding for a growing issue. Thank you for showing me how much you are trying to understand.
And then there’s reality…
I was scared and frustrated. I knew he was trying. And I looked at him, looking at me. And despite it all, we laughed. In that moment, there was no fear, or judgment, no frustration, or anger. Just laughter. I saw the glint in my son’s eyes, relaxation, and a desire to please me. And love. And I just loved back.
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