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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Conor's Fredericton Adventures 2013 Part I

Conor & Dad, couple of hosers enjoying the snow, eh?

Conor's Saint John River view clear day, above, not so clear below

Conor helps Dad with a visit at the Chalmers Hospital Acute Care Unit

Conor and Mom head out for  a stroll on the North Riverfront Trail

Conor changes his mind about the strolling part

Conor enjoys a late March snowstorm eh?

Conor isn't the only one who gets to fly along our North Riverfront Trail

The Run Jump Fly Boy lets it all loose on the North Riverfront Trail, Fredericton

Just days after Conor was running, jumping and flying down the trail he was taken by ambulance to the Chalmers Hospital in Fredericton where he spent 6 days in the Intensive Care Unit, and a total of 2 weeks in hospital, as a result of a life threatening adverse reaction to his anti seizure medication. 

Many thanks to the incredible doctors, nurses and staff at the Chalmers Emergency and Intensive Care Units for saving our Conor.

Conor didn't take too long to fully recover and there was no better way to show it than heading out on the trail with Mom and Dad ... where he had to wait from time to time for us to catch up.

Looking forward to lots more fun with Conor on the trail and elsewhere in 2013.  I hope he continues to enjoy the wonderful outdoor environment that Fredericton and friends like the Ospreys shown below offer. 

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One Grand Mal Seizure Later Conor Is Back

Conor was happy and full of life on our trail walk today. 

At times his feet didn't even touch the ground.

The Grand Mal seizure Conor experienced Saturday morning took him down pretty hard (and scared the bejeebers out of his Dad).  He did recover well though and today, under a beautiful blue sky in Fredericton,  Conor showed off his energy and enthusiasm as he, Mom and Dad (the invisible guy behind the camera) enjoyed a trail walk adventure to the Superstore.  Yes, we are taking it very seriously with medical examinations to continue but today we enjoyed Fredericton in the fall and we very much enjoyed our time with Conor. 

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Real World Autism Functioning Levels and Conor's Hospital Adventure

Dr.Everett Chalmers Hospital, 

Fredericton, New Brunswick

One of the many controversies that mark discussions of autism disorders is the question of functioning levels.  Some high functioning persons with autism and Aspergers object to the notions of low and high functioning autism.  Those who  claim that a reference to low functioning autism is not founded in "science" do not provide any credible scientific authority for their beliefs. Nor do they usually make reference to daily real life situations of the kind experienced this week by my severely autistic, low functioning son Conor.  Conor had to undergo dental procedures at the Dr. Everett Chalmers Hospital, the "DECH" as it is often described locally,  and he did very well throughout the process. The fact though that he had to be placed under a general anesthetic in a hospital setting for procedures which most people would undergo with a local anesthetic in a conscious state in their dentist's office arises because he is severely autistic and it would be too risky to his safety and well being to have a dentist do extensive filling work while he was conscious.  

In this case the severity of his autism disorder also precluded use of another local hospital in nearby Oromocto. This meant a longer wait for the procedure than if the Oromocto option had been open to him. The Oromocto hospital was used three years ago before his growth spurt which now has him standing a very solid 6' 1" as measured during Wednesday's preparatory procedures at the hospital. The dental surgeon who performed the procedures explained that Conor because of the severity of his autism condition AND his current size was now considered too big a risk for the Oromocto hospital. 

To prepare we called in advance and spoke with hospital staff about arrangements  including a quiet, private waiting room area.  We also spoke about it with Conor well in advance making sure he knew he would not be going to school that day.  Conor loves school and a surprise cancellation for any reason such as weather can be difficult for him. To ensure as positive an outcome as possible at the DECH it was necessary to prep him for what we described as a Hospital Adventure. 

All went well, and then some, with Conor enjoying Mom and Dad's company.  He also actually seemed to enjoy the attention of the several nurses, the anesthesiologist and the dental surgeon.  I was permitted to gown (no pictures were taken of me wearing the hospital gown and hat) and accompany Conor to the OR,  hold his hand and calm him while the IV was inserted and  he drifted off to sleep.  Before that point several nurses were attending to him in the OR and he thrived on their attention barely noticing Dad standing there holding his hand. There was some blistering and swelling of his lower lip (all now cleared up) and some very mild nausea after the operation but our big strong boy walked out holding Dad's arm without the need of a wheelchair.  A trip to the Burger King drive-through and some cheese sticks and Conor was happy heading home.  Conor spent the afternoon on the living room couch ... the cozy couch ... with lots of pillows and blankets and lots and lots of attention from Mom and Dad for the rest of the day.  He loved every minute of it.

We were proud of how well Conor did  Wednesday on his Hospital Adventure.    But we don't lose sight of the underlying realities.  We love our Conor and practice reality based autism acceptance, a form of acceptance which recognizes that autism is a disorder with different functioning levels and different accommodations for daily functioning levels.  Failure to recognize those different functioning levels is nothing less than discrimination practiced by those who should know better.  Because we do recognize the realities of Conor's autism disorder, and his functioning levels, we can help him have positive outcomes as occurred this week. Because we do recognize his functioning level realities we can free him up to succeed as he did this week to our great joy.  

The next day Conor even felt good enough to tease Mom and Dad with requests for another "Hospital Adventure". As soon as we said yes to another Hospital Adventure Conor would laughingly  withdraw the request replacing it with a  request to go back to school. 

To each their own.  In our house we embrace the Joy of Conor while practicing reality based autism acceptance, acceptance which recognizes the severity of his autism disorder and the limitations it imposes on his daily functioning.  As birthday 16 approaches next February we figure we have a pretty good handle on how to help our son, how to appreciate him and the joy he brings us. Reality based autism acceptance "functions" well for us and for Conor.

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Is Walking Autism Therapy? No, Just Fun for Conor and Dad

In the space of two days Conor and I went on several walks together.  Nothing makes me feel better than going for a good walk, preferably along a trail or hiking in the woods.  I love being outdoors in nature and I always have. As an added bonus I like walking even more when I am walking with Conor.  

We took advantage of the long weekend to get lots of walking in.  It may not be as scientifically based as swimming with dolphins or riding horses in Mongolia but it makes me and Conor feel better. We both enjoy walking together. So far this long weekend here in New Brunswick we have gotten out for several trail walks and a bridge walk across the St. John River to downtown and back.  Autism therapy? Well  ....  at least as much as most unproven therapies that stretch therapeutic value into therapy but no, it is just healthy fun with my buddy Conor.

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Time Flies And So Does Conor - Dad's Run Jump Fly Boy

The first two pictures show Conor today  at 15 and the last four show him 4  years ago at 11.  He is no longer the baby faced boy in the bottom pictures.  He is a young man.  But ... he is still Dad's Run Jump Fly Boy ...  full of energy and spirit. It is a gift he shares with his Dad.

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Conor Enjoys Wearing His Hoodie On A Chilly Morning Walk with Mom and Dad

It was a cool brisk morning when Conor headed out for a walk with Mom and Dad today.  Conor was quite happy to wear his hoodie under his jacket ... with the hood up most of the time.

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