Conor, 2nd Birthday, the day before he is diagnosed with
PDD-NOS (subsequently changed to Autistic Disorder)
Yesterday was Conor's 17th birthday. Today is exactly 15 years since he was diagnosed with an autism disorder, PDD-NOS, the day after his second birthday shown in the pictures above. Shortly afterward he was re-diagnosed with Autistic Disorder, and he was also subsequently assessed with profound developmental delays. I can't say that I am overly impressed with the research into autism causes, treatments or even our understanding of what constitutes autism that has taken place in the last 15 years. 15 years ago intensive early behavioral intervention was the only seriously evidence based intervention for autism as it remains today. 15 years after Conor's initial diagnosis there are no substantial breakthroughs in understanding the biological basis of autism as the goal posts keep getting moved to allow the dominance of genetic autism research to continue and to continue with the lion's share of research dollars. Today, like 15 years ago, possible environmental contributors to autism are largely ignored and receive only a small fraction of the autism research dollars available.
Even our understanding of autism diagnostic criteria are about to change again and for what reason? The DSM5 does not hold out any serious hope of increasing our understanding of autism disorders, symptoms, causes or possible treatments. The DSM5 will undoubtedly muddy the waters of autism research even further. Debates still rage over whether the astonishing increases in autism diagnoses of the last 15 years are real or whether they are caused by increased social awareness and ... the diagnostic definition changes of the 1994 DSM-IV. NOW in Conor's 15th year post autism diagnosis yet another definition will be forced upon North Americans? How can this possibly help autism research?
Services have been obtained for autistic children in various parts of North America in the 15 Conor autism years. Here in New Brunswick I joined with other parents fighting for early intervention, school and services for autistic adults. We made significant gains in early intervention service delivery as recognized by Dr. David Celiberti of the Association for Science in Autism Treatment and in our schools. In adult care nothing has changed as yet, nothing at all. Here in New Brunswick, Canada, we still dump our severely autistic adults in hospitals, jails, hotels and foreign facilities rather than develop our own enhanced adult autism network. Many others live in group homes with untrained staff. The gains we made in early ntervention and schools are being eroded and adult care has not been addressed at all.
If I sound gloomy I don't intend to be. I will advocate for Conor as long as I am alive and I can only do so by being honest. His autism challenges are real and I will not betray him by pretending that his autism is a joy. Conor himself is a tremendous joy and the proof is in the pictures you can find on this blog site and on my Facebook page which is open to public view. See for yourself. Conor's autism is no joy but he sure is.