I am not a neurologist, neurosurgeon or medical doctor of any kind.  I am not a psychologist or a certified behavior analyst.  I am a lawyer and a father of two sons one of whom has a severe autism disorder, profound developmental delays and ... in recent years has suffered a number of seizures including absence seizures and grand mal or tonic-clonic seizures.  He also suffered a life threatening adverse reaction to one of his anti-seizure medications.

With all that I can still not even begin to contemplate, with all the debates and lack of scientific confirmation of cause or cure that exists in the autism literature I have read over the past 15 years, the thought of surgeons cutting my son's brain in half. I am absolutely NOT second guessing the parents who have approved such surgery for their children.  I assume their children's seizures are much worse and much more frequent than what my son has endured. I believe the process is a last resort and is considered when severe seizures are identified as resulting from a specific location in one hemisphere of the brain. To those whose children have received a hemispherectomy I wish their children continued and total recovery and life improvement.

Apart from the kick to the groin that results from even contemplating such a remedy I am unsure from what I have read that the science of this radical procedure is solid.  I am aware that there are reported instances of success, and confirming studies,  as set out in the NBC News article "Taking out half a kid's brain can be best option to stop seizures, research confirms".  On the other hand there are also doubts about the process as set out in the Medpage Today article "Outcomes Mixed for Brain Surgery in Epilepsy".

I am not pretending to have any expertise whatsoever in assessing this medical procedure to deal with epilepsy.  I have advocated for many years for evidence based interventions for autism disorders because of my son's autism and have looked for the most authoritative guidance from genuine autism experts to do so.  I am simply trying to come to an understanding of epileptic seizures and possible treatments and came across this information about Hemispherectomy, literally surgery to remove half of a child's brain.  As a reader can probably tell, I am surprised, very surprised that such a procedure exists today and I understand that other people have faced these serious challenges before with the guidance of medical experts.  

If my son's condition worsens perhaps I would have to get over it and contemplate this option. Right now all I can say is no way! But .... I know I have probably not seen my son endure what other parents have seen their children endure.  I hope I am never forced by circumstances to make such a decision in my son's case and I admire the love for their children and the courage of the parents who have had to make such decisions. 

The Hemispherectomy Foundation web site is available to provide the information, child and family impact stories, and balanced perspective that are lacking in my emotional reaction to learning of this process. Personally I will continue to read more on this important subject.  If the day ever arrives that this procedure is recommended and necessary to help my son ... I hope the science is clear and I hope I have the courage to proceed with his best interests in mind.

The Children's Hospital of Eastern Ontario has been added as a respondent in a human rights proceeding, and accused of discrimination, after it kicked an autistic child with global developmental delay, severe intellectual disability, out of an early intervention program.

In an Ottawa Citizen article Don Butler reported:

"CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability. “Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.” The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The CHEO did not indicate what "the appropriate care" would be for a child with autism and global developmental delay OTHER THAN early intervention behavioural intervention.  It would be nice if the health "care" providers of the CHEO could indicate what other care was "appropriate" for this or any other child with autism and severe intellectual disability.

In the absence of any indication as to what other care would be of assistance to a child with autism and GDD, in lieu of early intervention,  the only reasonable conclusion is that the alleged health care providers of the CHEO have simply written such children off as unworthy of assistance.  

SFARI (Simons Foundation Autism Research Initiative), Risk of epilepsy in autism tied to age, intelligence, Laura Geggel, August 19, 2013

The information in the SFARI article above helps inform the public about a study and an issue of great importance, one that should be brought to the attention of parents, family doctors and pediatricians and clinical psychologists - the substantial numbers of persons with autism, intellectual disability, epilepsy. and the adolescent years during which many with autism and ID first endure epileptic seizures.

The study itself could be a capsule summary of my son's disorders during his first 17 years of life.  Diagnosed at age 2 (literally the day after his second birthday) , after several months of tests, Conor suffers from Intellectual Disability the ultimae taboo in autism world discussions.  Together autism and intellectual disability increase dramatically the chances of developing epilepsy.  As the article and study it reports indicate adolescence is an age when epilepsy appears for many with autism and intellectual disability.  That is exactly what happened with our son Conor.

Conor's first Grand Mal seizure, as I reported on November 17, 2012, (No Autism. Today, Conor's Grand Mal Seizure Scared The Hell Out Of Me) literally shook our world. We had reported what we thought were seizures to Conor's pediatrician 18-24 months before.  He would suddenly stare off looking away or close his eyes as though he was in pain. His pediatrician agreed they were probably seizures but indicated medication was probably not a good idea since there was no falling involved in his seizures.  On November 17 things changed dramatically with Conor's first Grand Mal.  He would later suffer a second Grand Mal,  and shortly thereafter a life threatening adverse medication reaction, which I have also reported on this blog.

Our experience led me to believe that pediatricians and other doctors, as well as clinical psychologists, should inform parents and advise them to be on the look out for the development of seizure activity in their autistic children.  Hopefully this major study reported by SFARI and the prestige of the Simons Foundation Autism Research Initiative will encourage professionals  to inform and educate parents of autistic children particularly those with intellectual disability to be on the lookout for seizure activity and how to recognize them.  They may also want to direct them to Silently Seizing written by Caren Haines, RN and mother of an autistic son who suffered from seizures.  The book pulls no punches in talking about the damage that can occur  from seizures and would be an honest introduction to the seizure activity and its risks. 

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.

Autism Speaks has done much to create publicity around the word autism, the color blue, puzzle pieces and ... some very talented, high functioning individuals with autism diagnoses like Alex Plank and J. E. Robison.  In terms of its public statements and presentations though it does little to nothing to  raise awareness about one very basic fact: autism has a very close relationship with intellectual disability to the extent that 40% of persons with autism spectrum diagnoses (DSM-IV) also have intellectual disability. 

Prior to the DSM-IV and prior to the addition of PDD-NOS and Aspergers persons with intellectual disability constituted the vast majority of persons with autistic disorder.  Autism Speaks has reluctantly acknowledged that 40% of persons with autism have intellectual disability but does not reflect their existence in their press releases.  Autism Speaks conflicted attitude toward those with autism and intellectual disability was illustrated vividly in the recent Drake and J. Cole lyrics uproar when Autism Speaks defended persons with autism but not those with autism and intellectual disability. Instead of criticizing the rappers for their derogatory reference  to persons as “autistic, retarded." Autism Speaks went further and argued that in fact persons with autism are very successful and talented. No mention was made in the Autism Speaks press release of the 40% of the autism spectrum who are intellectually disabled even though the words "mentally retarded." have been replaced by the words intellectually disabled.  

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. 

I have never subscribed to the assumption that Intellectual Disability is a co-morbidity as described by the authors of a new study examining Intellectual  Disability in Autism: (unrelated in etiology and causality from the ASD itself)  I have been frustrated by the historical tendency of  "autism" researchers to exclude intellectually disabled autistic subjects from their research studies.  I am very disappointed with Dr. Lord, Dr. Swedo, Dr. King and other APA members for their efforts to further the artificial disassociation of Intellectual Disability from Autism Spectrum Disorder (s) in the DSM5.  I have always believed, as the father of a severely autistic son with "profound developmental delay", and contrary to the "autism as strength" ideology of Dr. Laurent Mottron and Michelle Dawson, that autism and intellectual disability are inseparable components of my son's condition. I am very pleased to see reports of a new study, as set out in this brief online paper by the authors of that study, which begins to examine the ID and ASD relationship front on and with complete intellectual honesty.  

I hope that the proof of principle resulting from the study  that "ASD symptom severity contributes to the extent to which the environmental input required to support “typical” brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase"  is pursued further and that additional research on this topic is not squelched by the political correctness of those who control autism research funding dollars.

I also hope that researchers study the ID in ASD issue from  different perspectives:  that the ID increases the severity of the ASD symptoms and that ID and ASD are simply different aspects of one condition.   This humble father  does not believe that my son's severe autism symptoms and ID are separate coincidental or "comorbid" conditions.  I am pleased to see these "down under" Austalian researchers joining the ranks of the few with the intellectual honesty and curiousity to study the Intellectual Disability component of autism symptoms and disorders.

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!

Today is Canada Day and I am very happy to be a Canadian living here in Canada.   We can still enjoy living in one of the world's freest countries in the world.  I am happy and thankful that Canada is my home. I am thankful for our freedoms, our beautiful natural environment and our national health care system that generally takes  good care of all Canadians not just those who can afford the very best care. 

Not much positive though can be said on our national autism front, a point that was reinforced by the death this week of former Fredericton MP, national autism champion and all aground great guy Andy Scott.  Andy did succeed in getting autism on the national agenda with his private member's motion M-172 and tried to follow up to push the Harper government to action. Our Prime Minister and his submissive federal health bureaucracy though have done absolutely nothing to advance the cause of Canadians with autism, particularly those with severe autism disorders ... Canadians like my youngest son.   

Notwithstanding lack of autism progress nationally though events of the past year have brought home to me all too forcefully that I am very lucky to be living in this wonderful Canada. When I could not breathe while waiting in an after hours clinic I received immediate care, was sent by ambulance to the emergency clinic of the local hospital and received acute care attention for a week at minimal expense.  When Conor suffered grand mal seizures and an adverse drug reaction he received care for two weeks at the same hospital including 6 days in the intensive care unit where he received the medical attention that saved his life.

My family and I are fortunate to live in Canada even without national level autism effort. 

I will continue to fight on the national autism front with wonderful autism advocates like the members of Medicare for Autism Now! 

In the meantime I wish everyone a very happy Canada Day, eh!

Andy Scott fought on behalf of autistic persons in Canada.  He did not achieve all the goals he wanted by any means but he did what was possible in the time he had. Autistic Canadians have lost a champion today.  

We have been very happy with the excellent care Conor received after his adverse drug reaction. Everyone involved, from our family doctor who saw us very quickly after our concerns arose, immediately advised cutting back on Conor's meds and was at the ICU and pediatric wards as part of his treatment team to the doctors, nurses, technicians, physiotherapists and all staff at the emergency, ICU and pediatric ward teams. All were terrific in ensuring Conor's recovery. Everybody was top notch and we are grateful for their service to our son. 

Each day of progress brought fresh signs and while some work remains overall his progress has been great. This afternoon he and I walked the trail to the Superstore for an OJ treat and return home. The Run Jump Fly boy has not returned ... yet ... but Conor kept a brisk walking pace and Dad was very hard pressed to keep up ... another great sign of Conor's recovery progress.

The New Brunswick Teachers Association has spoken up ... sort of ... about New Brunswick's extreme inclusion philosophy.  The NBTA to its credit  acknowledges, finally, that inclusion is a philosophy not an educational plan as stated by outgoing NBTA President Heather Smith at a meeting of delegates from around the province.  Smith also acknowledged that the education focus during the past year has been  on the Porter Aucoin Report with all "professional development" focused on inclusive education.  Smith, in a recent Daily Gleaner article by Tara Chislett,  also talks about the need for more resources without identifying any of those resources.  Many autism students who require autism trained education aides do not have them.

Outgoing NBTA President Smith also fails to acknowledge that some students with severe autism and other severe difficulties require accommodation of their disabilities by learning outside the regular classroom. Unfortunately the inclusion extremists have targeted such human rights accommodations as constituting segregation and  are trying to eliminate them. What Smith did not say is that in New Brunswick inclusion is a ridiculously simplistic "everybody benefits from education in the regular classroom" belief.

Although Ms. Smith did not go far enough in her critique of the education philosophy that has ruled the minds of New Brunswick educators and civil servants it is a solid beginning.  At last one voice, other than the Autism Society New Brunswick in its submissions to the MacKay and Ministerial inclusive education reviews, and me personally, has spoken out against the decades old mindset that has provide obstacles to the accommodation of students with severe disability challenges.

In "The  new definition of autism" CBC News provides detailed descriptions of autism as represented by the five pervasive developmental  disorders in the DSM-IV and the Autism Spectrum Disorder in the now published DSM5.  With one major exception the article is a good summary of autism disorders pre and post DSM5. On another positive note the article expressly references ABA/IEBI as the primary evidence based intervention for autism treatment.  The major exception to this otherwise balanced, thorough article is the failure to mention, while describing conditions commonly associated with autism,  the substantial numbers of  persons with autism who also have an intellectual disability:

"What are some of the symptoms of ASD?

The CDC in the United States has estimated the numbers of persons across the autism spectrum who also have intellectual disability in the range of 41-44%:

There is no legitimate reason to ignore the large numbers of persons with autism disorders who also have intellectual disabilities.  It is a relationship that should be explored and studied (La Malfa)  not hidden  and stigmatized.

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.

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!

Shannon  Rosa, with the Twitter help of Seth Mnookin and Dr. Jon Brock is at it again, misrepresenting autism disorders and the state of knowledge about autism causation and of course blaming autism parents fighting for their children for the latest report of a professional caregiver abusing an autistic child because they dare talk honestly about the negative aspects of autism DISORDERS :

Ms. Rosa's wild, hostile opinions are not substantiated by evidence or professional consensus of any kind but that doesn't stop Mnookin and Brock  from spreading her hateful messages.  In the instant case there is no basis whatsoever to the claim that the media focuses on negative stereotpyes or that it does so because of  bad autism parents.  Temple Grandin is celebrated around the world.  John Elder Robison and son Cubby regularly receive promotion on CNN.  Television series inevitably portray autism in the form of the socially awkward but otherwise brilliant, high functioning techie, geek syndrome as autism. 

Rosa's claim that the abusive caregiver is influenced by the alleged overwhelming dominance of negative media stories is absurd and, once again, based on no evidence whatsoever. An abuser makes a cheap comment in the media and Rosa accepts it as reality because, in her mind, it confirms her negative views of other autism parents who do not share her views. This is no accident.  A mother in Colorado killed her autistic child and stated that she did so because she feared the child was autistic.  Rosa leaped to the attack against autism parents speaking honestly about their children's autism disorders blaming them for the mother's actions. What Rosa bypassed in her attack  was the fact that the prosecution had concluded that the woman was insane and for that reason did not prosecute her. 

I am not going to repeat all of Rosa's misinformation about autism on this site.  Her statements of fact are in fact simply her opinions, opinions that reflect her hostility towards autism parents who fight to improve their childrens' life prospects by speaking honestly in the effort to find autism causes, cures, treatments and services  for their children.  These parents, and I consider myself one of them, do not conform to Rosa's angry .... and flat out silly ... mischaracterizations.

While Rosa is out with her non evidence based rants about autism disorders and parents fighting for their autistic kids here is a bit of autism reality from the New England Journal of Medicine, the kind of stuff Rosa doesn't want the world to know about:

"Genomics, Intellectual Disability, and Autism

Prediction: the next similar tragedy that befalls an autistic child will also be blamed by Rosa on other autism parents with whom she disagrees.  Her views will unfortunately be promoted by the Mnookins,  Brocks and other professional and academic Neurodiversity subscribers.  Thinking Persons Guide to Autism? Not even close.