IDEA Disorder, Intellectual Disability-Epilepsy-Autism Disorder, On World Autism Awareness Day
Conor a year ago at the local ICU where he stayed for 6 days while the ICU professionals worked to save his life and return him to us in good health after a serious adverse reaction to his seizure medications. Other parents of children with severe autism disorders and intellectual disabilities should be made aware that their children are at very substantial risk of seizure activity particularly with the onset of adolescence. We didn’t know these well established relationships with any certainty until our son started experiencing them.
April 2 will be another World Autism Awareness Day in which the harsh realities that many with autism disorders live with will once again be hidden from public sight. Everyone will wear their blue shirts (including Conor and me) and many will put blue lights in front of their homes, businesses and legislatures. The Autism Feel Good crowd will tell everyone that autism is a difference not a disability and some will tell the world that historical geniuses in every field in the sciences, math, literature, art from Van Gogh to Einstein were probably autistic.
A misconception underlying much of the WAAD false awareness is found in the DSM assertion that there is one autism disorder with only 2 diagnostic criteria: Social communication/social interaction deficits and Restricted, repetitive patterns of behavior, interests, or activities. The DSM does also reference various “comorbid” conditions sometimes found in connection with autism including several from which my now 18 year old son has suffered along with his severe autism disorder: wandering, self injurious behavior, reactive aggression, absence seizures and tonic clonic seizures. The DSM categorization of disorders, as none other than NIMH Director Dr Tom Insel has pointed out, have no solid evidence basis for its conceptualizations of disorders. TheyDSM categories lack validity. So said Dr Tom Insel before he repeated it again (sort of) but stated that he only meant it for research not clinical purposes.
One of the areas in which the DSM5 erred egregiously (in the humble opinion of this lowly father of an 18 year old son with severe autism disorder, intellectual disability and epileptic seizures) was to combine the 3 varied and distinctively different disorders of Autistic Disorder, PDD-NOS and Aspergers into one “spectrum” disorder. Renowned autism experts , including such authorities as Lynn Waterhouse, in Rethinking Autism: Variation and Complexity, have started to explicitly describe “autism” as a varied, complex and heterogenous group of disorders or symptoms. Dr Waterhouse has again written on the subject of autism heterogeneity in a paper co-authored with Christopher Gillberg, (2014) Why Autism Must Be Taken Apart, the abstract of which states:
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