Friday, October 17, 2014

Canada's Autism Awareness Month? Not Much Awareness Going On ... Once Again



October, for what its worth, is Autism Awareness Month in Canada.   You will probably see performances by persons with Asperger's or high functioning Autism.  There will be wonderful success stories and accomplishments shared to give parents hope, in many cases false hope, about their child's future. 

There will be little mention, if any, of the persons who suffer from severe, low functioning Autism Spectrum Disorder.  There will probably be little about such serious issues as sensory challenges, self injurious behaviors, meltdown, wandering resulting in injury and death, seizures and other challenges common to persons with autism disorders.   You probably will not be told that the World Health Organization estimates that approximately 50% of persons with an autism disorder also have an intellectual disability. Nor will you learn that approximately 40% of those on the low functioning, severe end of the autism spectrum will also suffer from epileptic seizures.



2 sides of Conor: his joyful personality and his autism disorder

Above Conor and Mom enjoy a walk at Halls Harbour Nova Scotia
Below Conor engages abruptly in self injurious behavior hitting his head



You will probably see lots of walks and parades and fun events "to support autism" whatever that means. There will be lots of feel good stories but you probably won't even hear that autism is ...... gasp ..... a disorder, a neurological disorder.

Autism awareness in Canada, like the US April version, is little more than a month of feel good cliches and buzz words about the joys of autism and stories.  There will probably be few mentions of harsh realities like the information provided in the 2007 report of the American Academy of Pediatrics,  Management of Children With Autism Spectrum Disorders:

Associated Morbidity and Mortality

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs,8991 and available data suggest that mortality is increased as well (standardized mortality ratio: 2.4–2.6).92,93 The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy. Cases of suicide in higher-functioning individuals have been reported.6
Others may do and say as they wish about autism and pretend their child's autism is a  blessing. I find great joy in my son every day and love him dearly.  I love him too much to pretend that he does not suffer from his severe autism disorder, intellectual challenges and seizures.  I love him too much to hide his harsh realities under a blanket of feel good autism "awareness" cliches. 

4 comments:

w ford said...

You will also not see people with high functioning.autism as discussed with many of the same health issues like low functioning ones. I have legit high funct.autism and medical issues nearly killed me 6 times at least including one.seizure.caused by low blood sugar not from diabetes. Even among so called high funct autism all these math protogies are rare exceptions we.suffer too

Roger Kulp said...

I wish we could step back a little and look at the labels we use to describe what we call autism.The language we are using is very flawed.

Harold,you know a lot about me,and all of the struggles I have had.The medical problems,the regressions,etc.I can't speak for my original autism diagnosis as a child,but I was reevaluated and rediagnosed as an adult in 2008,under the DSM-IV.My evaluation was two full days long.I was found to have very good speech and language abilities,but to be both severely autistic,and profoundly low functioning in every other area,and I certainly was.In practical,adaptive,and social skills,I scored as profoundly intellectually disabled.Every area but speech and language,and I was.This is all stated in the report of the diagnosis,as is the fact I was too low functioning to live on my own,and needed to be put in a residential care facility under strict supervision.There were papers for my mother to sign to put me in such a facility at the end of the evaluation.Luckily my mother refused.A couple of years later,my cerebral folate and Severe MTHFR deficiencies were discovered,and of course the results of treatment were dramatic.I have also learned autism that is very low functioning,but with intact speech and language is common with mitochondrial disease,and I have finally been found to have genuine mitochondrial disease in the last few months.It has taken almost six years of tests,and travel to doctors in five states to get there.

My diagnosis came from a trip I made to Arkansas Children's Hospital in August.In order to be seen at ACH,one of the things I had to provide was documentation of an autism diagnosis.I was stunned when I read the report for the first time.Even though I was profoundly low functioning in every other area,my final diagnosis was Aspergers,simply because I had no problems with speech or language.If someone like me can have the exact same diagnosis as the very high functioning neurodiversity types,it shows the way autism has been diagnosed has been seriously flawed all along,because of how little it factors in.For all the problems with it,the DSM-V is a big improvement.

There are also those who are the opposite of me.Those who are very high functioning,but happen to be nonverbal,who have gone on to get college degrees,etc.Just something to think about.

Anonymous said...

I think that Conor is very much a feel good success story. Given the challenges he has. The fact that he can follow a routine, go to the dentist, and understand basic social skills is a huge success. He may never be the poster child of autism speaks but he is a realistic goal for parents of children on the severe end of the spectrum.

Mommie that Gets It said...

"Others may do and say as they wish about autism and pretend their child's autism is a blessing. I find great joy in my son every day and love him dearly. I love him too much to pretend that he does not suffer from his severe autism disorder, intellectual challenges and seizures. I love him too much to hide his harsh realities under a blanket of feel good autism "awareness" cliches."

Your honesty and love for Conor always hits my heart! All the best! Heather