16 Years After Conor's Autism Diagnosis: Lots of Conor Joy But No Progress in Autism Research

Yesterday was Conor's 18th birthday. Today is exactly 16 years after his autism diagnosis, received the day after his second birthday and after several months of testing and observation. Conor, now a young man, is still the happy boy that brings joy to his Mom and Dad, along with many serious challenges, challenges that restrict his life. Here in New Brunswick, Canada, some progress was made by a commitment to evidence based intervention by a determined parent advocacy movement. In the big picture though there has been no meaningful progress and in fact there has been very substantial regression.

The regression has occurred with the creation of the Autism Spectrum Disorder diagnostic category in the DSM-5, unifying into one disorder several categories at a time when the incredible variety and heterogeneity of the autism disorders, the "autisms" as US NIMH Director Dr. Tom Insel has described these conditions should be crystal clear.  At the same time the masterminds who crafted the new DSM-5 ASD still describe groups of disorders such as "autism" intellectual disability and epileptic seizures as co-morbid conditions implying that they are separate conditions appearing together coincidentally when in fact their frequent appearance together clearly indicates they are part of one disorder, condition or subset of symptoms which most likely share common causal factors.  

Whatever way one looks at it autism research will be set back by creating a different condition to compare to earlier versions. The autism research community really has few successes, since Lovaas and those who confirmed and expanded on his work, and few causal factors have been identified with certainty.  Now the autism research community that has failed so miserably will face an additional hurdle ... comparing apples to oranges ... DSM-5 autism cases to DSM-IV cases and adjusting their results to accommodate the differences.  Good luck with that.

DSM-IV or DSM-5 the autism research community still clings tenaciously to the belief that with respect to the autisms "it's gotta be genetic".  While lip service is paid to the concept that autism results from the interaction of genetic and environmental factors research dollars still flow overwhelmingly to genetic based autism research.  Calls for an environmental autism research strategy by respected authorities  like Grandjean, Landrigan and Birnbaum are largely ignored.

Convenience and the false belief in a "pure" autism also continue to strip autism research of any value.  Autism research subjects tend to be high functioning autistic persons who are easier to work with in conducting studies. The exclusion of more challenging lower functioning participants from autism studies is justified by the non evidence based belief in a pure autism.

The truth is autism research has produced nothing of significant value in the 16 years since my son's autism diagnosis 16 years ago today.  The autism research community failed persons with autism and their parents and families when they twiddled their thumbs while the cold mothers fantasy was allowed to prevail and cause harm to all touched by autism. Since then there has been many dollars spent on autism research with precious few results to show.

I am being realistic about the state of autism research over the last 16 years just as I am being realistic when I describe the great joy that our severely autistic son Conor has added to our lives.  To Conor I say thanks Buddy.  To the autism research community I say get your acts together, start producing some results. 

Conor at age 2 loved his cake and icing and that is still true today.  He was 

and remains a happy, joyful blessing in our lives despite the many 

serious challenges that his autism disorder and "co-morbid"

 intellectual disability and epileptic seizures present. 

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Proud of Our Conor

Conor looking cool, calm and composed in his grandparents' yard in 

Nova Scotia's Annapolis Valley in November. This morning he showed  just 

as much calm while enduring an early morning blood sample needle.

We were, once again, very proud of our Conor today.  Not for demonstrating some special "autism" skill, not for anything that would be featured in a sensational media story.  We were proud because Conor had blood tests scheduled again at the DECH, the local hospital where Conor spent 2 weeks in hospital last year, including 6 days in the Intensive Care Unit.  He had blood tests scheduled to help establish baseline measurements.  He handled them with as much cool, calm composure as actor Steve McQueen portrayed in "the Great Escape" movie. 

Giving blood samples can be a challenge for many adults.  For Conor the blood tests this morning meant he had to fast for 8 hours before the tests and had to start his day at the local hospital before heading off to the school he loves (Leo Hayes High School, Fredericton).  

He had expected to be in school yesterday, like most Mondays but we had forgotten to check his school schedule until the last minute when we were tipped off by a neighbor.  Monday school had been cancelled because of Teacher Development Days so Conor was very anxious to get back to school today.  Conor handled the early morning hospital visit and the blood sample needle with great calm.  He didn't fuss or fidget, whine or whimper and his Mom and Dad were happy to treat him to 2 Tim Horton bagels for a post hospital visit blood test.  Conor made us proud and we were happy for him ... and relieved ... and we got him back to school ASAP.

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See You At 6

Conor went to bed at his usual time tonight.  After about an hour he got up to use the washroom.  As he was heading back to his room he said in his own manner of speech "See you at 6" which is the exact time he gets up every morning.  He then  puts CBC NB Morning news with Terry Seguin on the television.   When Conor says see you at 6 it makes me, and his Mom,  feel very good.  Every day Conor brings us joy ... great joy ... starting at 6 am.

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Life in Conor's "Back Yard", Fredericton's North Riverfront Trail, in 2013

2013 was a challenging year for Conor and Dad health wise. I spent a week in acute care with some respiratory issues and Conor spent 2 weeks in hospital, including a six day stay in the ICU recovering from a life threatening adverse reaction to his seizure medication. Overall though life was good in 2013, including life in Conor's "back yard", Fredericton's North Riverfront Trail. We are just a couple minutes walk from the trail and the St. John River and we enjoyed the trail as often we could.

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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.

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Excellent! Chalmers ICU Team Reaches Its Funding Goal to Purchase New Patient Monitoring Equipment!

The Chalmers Foundation has officially announced that it has met its funding goal and will soon be purchasing the patient monitoring system that is instrumental in helping the Chalmers Hospital Intensive Care Unit save many lives ... including my son Conor's for which his Mom and Dad will always be grateful:

"The Chalmers Foundation shared a link. September 25

The Foundation along with the DECH Auxiliary Inc. have officially reached our $600,000 goal to support the purchase of a new monitoring system for the ICU here at the DECH!! A HUGE THANK YOU to all donors, supporters, staff and volunteers for making this a reality! We certainly would not have been able to make this possible without your help!"

Conor at the ICU surrounded by the old monitoring equipment

Conor sharing some "happy" with his Mom, months after the ICU saved his life

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Dear TPGA Autism Experts: Thanks For Advising Us to Love Our Autistic Son! If Only We Had Known Sooner!

During recent weeks the TPGA "autism experts", have done a great favor to children, like my son, who suffer from severe autism disorders.  The TPGA autism wizards told parents like me who speak candidly about the deficits that limit and impair his ability to function independently in this world that we are making "monsters" of ours and all autistic children. 

Our children's autism disorders, in the view of the humble yet brilliant autism experts are not really disorders, despite the title, despite the medical diagnoses that identified them as autistic. For our children's benefit we should learn to accept them as they are; autism and all.  

The wise and brilliant thinking persons of the TPGA have advised us to ....... love our children. ....... wish we had thought of that ourselves.  Maybe our Conor would have turned in to a warm, smiling and happy young man ..... like the Conor in these pictures.  

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Conor Countdown Continues In Support of FLEXIBLE, EVIDENCE BASED Inclusion

The Conor Countdown continues, as Conor gets up each day at 6 am and changes the number reflecting the number of days until school resumes.

My son Conor, and his autism disorder disability,  have been well accommodated in schools here in Fredericton, New Brunswick, Canada.  He has benefited both from the assistance of education aides and resource teachers trained in the UNB-CEL Autism program and by placement, at our request, outside the regular classroom for his ABA based instruction.

 His placement is not segregation in the sense of the racial segregation which once prevailed in the American south.  His placement reflects the fact that Conor's autism based sensory sensitivities and need for predictable routine, coupled with his individualized learning style and instruction methods require a quieter learning environment. 

In the regular classroom, early in Conor's education,  he bit his hands every single day until he was removed to a quieter location where the self injurious biting ceased. Now in high school his individualized instruction continues but he has many, many opportunities for socialization at the Leo Hayes High School Resource Centre with other students with special needs, in common areas and activities like school outings, visits to the cafeteria and ... Conor's favorite by far ... in weekly visits to the Nashwaaksis Middle School swimming pool. 

Conor loves his flexible, evidence based schooling so much that the summer, with no school, is a difficult time for him.  We do our best to help him during this period and Conor does his best to help himself.  One of the activities that helps him get through the summer break is the "Countdown".  Each day, every day, at 6 am Conor gets up and changes the number on his board under the question "How Many Days Until School?"  He can see the number getting smaller each day, he can take steps each day to make the number smaller reducing his anxiety and frustration.

Conor's self injurious biting while placed in the regular classroom was a vote against the extreme, non evidence based "regular classroom for all students" philosophy. Now, during the school year Conor packs his lunch bag every night and puts it in front of the side door to the driveway and Dad's car. During the summer Conor does his "How many days until School" countdown.  Both activities are strong compelling statements from Conor in support of the flexible, evidence based, inclusive education he has received at school since being removed from the regular classroom.

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Run Jump Fly Boy Is Back - Thank You Again DECH ICU!

A few months ago, Conor was lying unconscious  in a bed at the Intensive Care Unit of the Chalmers' Hospital (the DECH) with tubes running out of his body and hooked up to 10+ year old monitoring equipment.  Notwithstanding the age of the monitoring equipment the fantastic DECH ICU team brought Conor back to us without any restrictions or impairments.  Conor's recovery has been constant since his release and we are happy. Today on the trail Conor hit the final recovery benchmark with the return of our Run, Jump, Fly boy!

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Why I Chose Autism REALITY As My Social Media Name

The picture above, for those visiting my blog for the first time, is my son Conor now 17+ years old.  I love him dearly and he brings great joy into my life every day.  He is also severely autistic with severe cognitive challenges (intellectual disability) and like many with those characteristics he also suffers from epileptic seizures.  As great a joy as he is he also engages in acts of self aggression and suffers from sensory challenges, meltdowns and obsessively repetitive behaviors that are very disruptive in themselves.  

For Conor his autism is not a joy, a blessing, a superior ability or a different way of thinking.  It is a serious disability, a disorder,  and his intellectual disability and epileptic seizures are not "co-incidences" or "co-morbidities". They are part  of his reality, a unified part of his reality, together they limit his life expectancy. Those are all facts that I have been determined to face throughout his life so that I do not do him a disservice.

I will never run from Conor's reality because to do so, as it would for an obvious, physical disability, could be harmful to him.  I have chosen long ago not to embrace the non evidence based belief that if I only pretend that autism is a blessing that somehow that belief will magically transform reality. 

I have helped Conor by being part of his life and enjoying his company every single day and will do so as long as I live. I have tried to help my son, and others in my province and country who suffer as he does, through determined advocacy, by  facing reality head on. And I will continue to do so as long as I live.  Others can choose political correctness and feel good cliches. I will continue to deal with autism ... reality ... and love my son as I do.

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Conor Debunks TWO Autism Myths Eh!

Yesterday was Canada Day and Conor sported his Team Canada shirt to celebrate.  He also debunked not one but TWO autism myths.  Conor has received ABA based intervention at school for 8 years.  Yet, contrary to the myth that ABA causes discomfort and harm to persons with autism disorders,  Conor shows his terrific smiles again ( see also side bar on this blog) debunking that nonsense yet again.  He also debunks the myth that people with autism disorders do not like hugs and his Mom was very happy to assist in the demonstration!

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Conor Goes For A Swim (and a Dive and a Slide) and Shows Terrific Progress In His Rhabdomyolysis Recovery

Conor home after a great swim adventure;

making terrific progress on his recovery

Conor's autism and profound developmental delay were supplemented by two grand mal seizures between November 2012 and April 2013.  The second seizure occurred two days after he began treatment with the anti seizure medication Lamotrogine.  During the second week of treatment when his dosage was increased from 1 to 2 25 mg tablets a day he began to sleep and medical advice was sought.  The specialists were not available quickly but our family doctor saw us early the next day and advised us to cut back on the dosage which we did.  Later that day though Conor still developed a rash and temperature and went to the emergency ward of the local hospital, the DECH.  He spent 6 days in the Intensive Care Unit and two weeks altogether in the hospital.  Conor's adverse reaction to his medication was diagnosed as Rhabdomyolysis a condition in which the muscles break down and release substances which pose great risk to the kidneys.  But Conor received excellent medical attention and was released to come home where he has continued to make made great progress.

We would like to take some credit for Conor's great recovery but the truth is he has led with his own initiative. Conor was jumping up off the couch even before he had his balance and we had to keep a close watch on him. This week Conor returned to school for part days.  His mobility and balance improved dramatically each day and this morning he went swimming at school for the first time since his hospital stay.  The plan was for Conor to go to the pool and sit in the hot tub.  Conor had none of that.  His aide informs us that instead  Conor walked down the accessibility ramp into the shallow end of the pool. He subsequently went to the  diving board where he jumped into the deep end and swam like a fish.  Conor also made for the giant slide where he climbed to the top and slid down.   

I couldn't have asked for a better present then to learn about Conor's swim adventure today.  6 days in the ICU with 5-6 tubes at a time sticking out of my buddy Conor seem  like a bad dream today.  Our Run Jump Fly Boy was flying today and we are happy, very happy.

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Conor's Physiotherapy With CBC's Terry Seguin

Conor is still recovering from Rhabdomyolysis, an adverse reaction to anti-seizure medication, Lamotrogine and needs phsyiotherapy to rebuild his damaged muscles, balance and co-ordination.  Just being home is a huge help for Conor, back home with Mom, Dad, his brother and his familiar routines.  One of those routines has been to get out of bed every morning at 6 am.  If he is awake at 5:30 he stays in bed until 6. That is his routine and Conor has a classic autism need for routine.  When he gets up each morning his routine has also included turning on the television and watching  "CBC Terry Seguin".   

Conor has been sleeping on a living room couch since his return so I could be nearby on our other couch to keep an eye on him in case he was in distress. This morning I was in the adjacent kitchen when I heard some loud walking noises in the living room and went in to find that Conor had walked from the living room to the television to turn on CBC Terry Seguin.  Conor has been very wobbly on his feet and he has a long way to go towards recovery so I was startled to see him at our big screen TV.  I was happy though that he had done so without falling and hurting himself. It was a sure sign of progress in his recovery.  His CBC Terry Seguin television walk demonstrated improvement physically and showed that Conor will not stay down, he will keep walking until he is fully recovered.  Two thumbs up for Conor ... and for Terry Seguin!

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Conor Is Home From the Hospital!

Above Conor, and Mom, in the bottom pic,  on the way home.

Conor's Mom stayed at the hospital with him 24/7,  for 2 weeks

Dad spelled her off at times and the nursing students also sat

with Conor and gave Mom some breaks once he was moved

from the Intensive Care Unit to a room in Pediatrics.

In the grainy pic below (taken in dark lighting) Conor rests

at home on one of our living room cozy couches.

Conor is home! After 2 weeks in the hospital, including 6 days in intensive care, it feels great to have our buddy home with us. Yesterday I told Conor I would be back at 8 am this morning to take him home.  I arrived at 7:55 am and Conor Was waiting in the door way of his room ready to go home.

We really didn't know for the first few days if he would survive.  His negative reaction to the anti-seizure medication Lamotrogine resulted in a condition called Rhabdomyolysis which is as bad as it sounds.  Essentially, as I understand it the muscles break down and can cause renal (kidney) failure.

Conor is home now, safe and healthy. We all have lots of work ahead doing phsyio  with Conor as he recovers strength and coordination. Conor has shown substantial improvement each of the last several days and we are very optimistic that our Run, Jump, Fly boy will be back before too long. 

There are many, many people to thank for Conor's well being today. There are literally so many: all the hospital medical, nursing and support staff, our family doctor, people who know and work with Conor at school who visited with him in the hospital,  family friends and Conor's brother Brandon who was a big help at home and at the hospital on visits. 

We are happy, very, very happy to have our buddy home with us. Today is a great day in the Doherty home.

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