Severe Autism Disorders: Conor's Autism Progress: Teeth Brushing and Tickle Shaves!

Conor Doherty sporting a big smile after a quick 

tickle shave adventure with Dad this morning

Many famous "autistics" were not diagnosed until they were adults and have turned their diagnoses into good career opportunities: John Elder Robison, Michelle Dawson, Ari Ne'eman and Mr. Ne'eman's colleagues, the fellow corporate trustees of the Autistic "Self" Advocacy Network.  For these extremely high functioning "autistics" autism is merely a difference not a disorder and they object, some even demonize, parents who talk about autism DISORDERS and seek TREATMENTS and CURES for their autistic children.  For my son, who unlike all of the aforementioned, was diagnosed with a severe autism disorder and developmental delay the day after his second birthday autism is a disorder that severely limits his daily functioning abilities.  

For Conor progress is not measured by speaking appearances at, or provision or participation as an Autism Speaks science advisory board or Washington press corps events.  It is not measured by success as a letter carrier with Canada Post, (a challenging job of which I have professional knowledge), a career researching high functioning autism or service on corporate boards for Autism Speaks or ASAN.  Nor will he be asked to participate on the IACC in the United States or similar agencies in Canada if they are ever established by a future, post Stephen Harper, federal government.  

Conor's progress though is measured in activities that are important and bring us great joy and happiness when they can be measured.  We are not part of the confused crowd that tries to sway public opinion into thinking that we should love the autism disorder from which our son suffers, the disorder that severely limits his daily functioning abilities.  For us Conor's progress is measured by excellent dental checkups and the ability to get his face shaved to make him presentable to attend at the school he loves so much.  Following are two recent Facebook posts which speak to Conor's progress in these important areas:

Tickle Shave Progress! Conor is now a young man and his whiskers need to be trimmed regularly. As with haircuts, and to an extent more so, Conor is nervous with razors scraping his face. I have called his shave a tickle shave to try and make it less frightening and I involve Conor in scheduling a shave. Yesterday I talked with Conor about having a tickle shave before school this morning. Shortly after he woke me up at 6 am sharp (as always) I asked him if we could have tickle shave at 7 am and asked him to let me know when it was 7. Conor let me know at 7 and we got a tickle shave done more quickly, and with less discomfort for him, than we have previously. A good start to the week!

Conor's dental checkup this afternoon went very well. Conor was cool, calm and collected sitting in the dentist's chair even while Dr. Andrews did a tiny bit of cleaning. The verdict: Conor's teeth are looking great!!!! I honestly believe Conor enjoys brushing his teeth.

Autism disorders are now widely recognized to be heterogenous in nature with wide variations in intellectual ability (50% of persons with autism also have an intellectual disability, WHO, September 2013), some have epilepsy, some suffer from depression, some from self injurious behavior.  Some leave the security of home and school, in some cases resulting in tragic ends.  My son left our house, on my watch, while I was occupied on a business call. Fortunately a good Fredericton citizen took him to a nearby convenience store, called 911 to report my son's presence there and waited until I arrived frantically after calling 911.  The good citizen, on learning I was there as Conor's Dad just left without giving me a chance to thank him.  My son also suffers from intellectual disability, self injurious behaviors and meltdowns and serious epileptic seizures.  Progress for my son is not measured in corporate board memberships or book sales, it is measured in calm dental checkups and good teeth.  It is measured in being able to shave the heavy beard from his face without too much discomfort to him to ready him for school.  My son has a severe autism disorder among the many variations of this heterogenous disorder.  The very high functioning media stars diagnosed as adults have much different measures and much different autism disorders.  They can sell all the books they want, build all the careers they want but they do not speak for my son with severe autism disorder.

2011 Autism Progress or Back to the Future?

Was there any progress in addressing autism disorder issues in 2011?  In the humble opinion of this father of a severely autistic 16 year old there was very slight progress on the research front, very slight, and that progress was more than offset by the regression on other fronts particularly in the area of autism awareness.  

The hard core reality is that in the six years since I began this blog and in the nearly 14 years since my son was diagnosed with autistic disorder no substantial progress has been made towards curing, treating or even understanding autism disorders.  The displacement of the original more severely autistic population with very close links to intellectual disability by Aspergers diagnosed, in some cases self diagnosed, persons with very little, if any impairment in daily life functioning has confused the public, confounded autism research and taken the pressure off of autism service providers.  

The severely autistic are still under represented in autism research which now searches Korea and the rest of the world for those who are so high functioning that they are not even noticed as having a disorder in highly structured, organized societies. Those who are barely autistic, if at all, still purport to speak on behalf of those on the spectrum who are severely affected by autism. Governments feel less and less pressure to provide services for those who most need them because autism has become autism fluffy and lite in the New York Times and other influential mainstream media outlets.  

The original severely autistic remained invisible in 2011 and with the DSM5 removal of the intellectually disabled from the autism spectrum will be forgotten completely.  Hidden out of sight in institutions, they are now out of the public mind completely which instead sees highly intelligent, highly functional "geek" populations,  as representative of autism.  Autism has become autism lite and fluffy. Autism dark and heavy remains hidden and forgotten.

For those seeking treatments and cures for autism, for the original, invisible, severely autistic population in 2011 it was just another year like those before,  just more back to the future.