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. 

Saturday, October 04, 2014

Canada's Autism Awareness Month Message: Autistic Children Become Autistic Adults

Autism Awareness Month:
Autistic Children Become Autistic Adults

October is Autism Awareness Month in Canada.  As a father of an 18 year old son with severe autism disorder, profound developmental delays (like 50% of the autism spectrum according to the World Health Organization) and seizures which also affect many with autism I can tell you from personal experience that autistic children become autistic adults. Enjoy your child's early years and student years but do not forget that they will grow up and many will need enhanced adult autism residential care and treatment.

With other parents of autistic children I began advocating 15 years ago for evidence based early autism intervention.  Like those other parents my son did not receive the early intervention services which many autistic children in NB now enjoy.  We knew it would not be put in place in time to help our kids,  but it was the right thing to do, to advocate first for early autism intervention. We also advocated for autism trained TA's, education assistants, whatever the term du jour is now,  and my son and others did, and still do, benefit from our advocacy as do many other autistic students in NB today.  We may have been the early "wave" of parent advocates but we are still part of the picture today particularly in advocating for adult autism care and we ask you to join us but do not make the mistake of thinking we will "step aside".  Parent autism advocacy is not a "wave" it is a life long necessity; a life long commitment ... for all of us.

Absolutely no progress has been made on adult autism services and I ask parents whose children enjoy the benefits of early autism intervention and student autism services to think ahead and help advocate for the adult autism services our children need and many of your children will also need.  Some have already started advocating for improvements in early intervention and improved autism education services.  A group has also started a petition and joined the fight for an enhanced autism group home system around the province, as described in 2010 by Professor Emeritus (Psychology) Paul McDonnell,  with a residential care centre for the most severely autistic, a centre which would also include professional expertise to assist the regional group homes.

The online petition is a good idea and I urge everyone to sign the petition.  I also ask you to consider sending a personal email, fax or letter to your MLA.  I believe, based on my 15 years of autism advocacy, with the ASNB, personally, and as a legal advocate for some autistic students, resident of a group home and an individual who resided in the Psychiatric Hospital in Campbellton for 4 and 1/2 years, that the personal mail/email communications will carry additional weight. 

Whatever you do enjoy your autistic child as he or she grows and develops, as you would any child, but please do  not forget that many of your children will face complex challenges throughout their lives and will need you as their advocates for as long as you can be of assistance.  We can be of assistance to each other if we work together selflessly and for the benefit of our autistic children, adults and family members.


Harold L Doherty

Friday, October 03, 2014

Severe Autism Reality: Conor is Back from Dental Surgery AND Post Surgery Medications

After last Friday's dental surgery, followed by nearly a week of 4x a day anti-biotics, and the occasional pain killer to deal with swelling and pain, (in addition to his regular seizure meds)  it was great to get out for a Superstore trail walk with Conor on an amazingly perfect fall day in Fredericton yesterday. 

Conor set the pace as always but had time to be nice to Mom.

Friday, September 26, 2014

Severe Autism Reality: Wisdom Teeth Extraction At the Hospital

Conor and Mom had some fun with a couple of selfie shots above while waiting for further processing at the Oromocto Hospital today.  In the car picture below Conor multi tasks giving Mom "five" while having fun on the Kindle and waiting for Dad to get the show on the road. It was not as easy as it looks though. We prepared Conor for the experience as best we could in advance letting him know a week in advance and talking about it in detail, including putting a list of stages for the day up on the kitchen wall. As usual the day ends with some Jeopardy fun with Alex Trebek. 

Teeth extraction is one of the ways severe autism disputes the irrational notion that autism is "just a different way of thinking" not a disorder.  Extractions for most involve a visit to the dentist office.  For many with severe autism it requires full sedation in a hospital.  Freezing the gums, sticking a needle in Conor's mouth, pulling out teeth, cutting and stitching up gums while Conor is conscious is impossible and would result in serious injury to Conor with considerable risk to the dentist. 

These pictures show of the preparation and interaction we did with Conor who is now stretched out comfortably on the couch watching CBC New Brunswick News with Harry Forrestal (in the morning its Terry Seguin).  Return to routine is, as always, the base for return to normal for Conor.  

2 thumbs up for our buddy Conor who did a great job remaining calm and cooperating with hospital staff today!