Wednesday, February 20, 2013

Conor's Autism Diagnosis 15 Years Ago Today




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. 

3 comments:

Alice said...

I follow your blog from Brazil.
I am a psychiatrist and my brother is a psychologist, behavior analyst, who works with autistic too, especially with interventions in problem behaviors such as self aggressiveness.
Ironically, I have a "half nephew" of three years which has a pervasive developmental disorder, despite what the parents still do not accept the diagnosis.
Quite understand your frustration about the treatments available for adults with autism, but I admire your fight for achievements in early intervention and the questioning about the inclusion of patients with disabilities in regular schools.
I believe in my country we have even more difficulties. Unfortunately, we still have a very strong psychoanalytic culture and great difficulty in finding professionals who work with applied behavior analysis. Even patients with financial resources have difficulty getting adequate guidance. On public health service then it is impossible ... In psychiatric training studying behavior analysis is also neglected and many professionals still expect to solve any problem behavior with pharmacological intervention alone.
Currently in Brazil the health department has opened a public consultation to define the line of treatment to be instituted for patients on the autistic spectrum. Unfortunately, the political strength of psychoanalysis in Brazil is still very strong. However some emerging movements of associations of parents and behavior analysts in an attempt to reinforce the importance of the treatments that have scientific basis.
Anyway congratulations on your fight. For me it’s a great example

Autism Reality NB said...

Alice, thank you for your kind words of support and your perspective from Brazil.

Harold Doherty

Roger Kulp said...

The diagnostic labels have never been that good for saying how severe the autism is.My original diagnosis was in a school setting,back in the days of childhood schizophrenia.I was reevaluated as an an adult,and found to be more severe than Asperger's,but not as severe as autistic disorder,and it was left at that.I have seen some people call this PDD-NOS,which I am starting to suspect it was.But I have also seen a lot of parents who say their child has PDD-NOS ,and has a diagnosis so mild,that is barely on the spectrum.The DSM-V lumping of everything under autism,may be admitting that it can be too difficult to properly label someone.

I think in a lot of cases ABA can be nothing more than a band aid.I think every person with an autism diagnosis,should have as many genetic,metabolic,and autoimmunity tests as possible,to see if there may not be a treatable cause.

Advocacy is the most powerful tool you can teach your child,and not the phony type ASAN pushes.Self advocacy is the only reason I have gotten where I am today.