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.

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. 

Rethinking Autism Variation and Complexity by Lynn Waterhouse is a recent work which provides a thorough, expert and extremely well researched picture of the variation and complexity of  autism spectrum disorders.

Hopefully the rest of the professional and academic autism community will read Rethinking Autism and come to grips with autism variation, complexity and heterogeneity. The highly influential autism advocacy corporation Autism Speaks has typically done a poor job of representing the heterogeneity of the autism spectrum of disorders. AS has aggressively promoted the careers of John E Robison and Alex Plank two very, very high functioning persons with Aspergers/Autism Spectrum Disorders.  At the same time Autism Speaks has also obscured the existence of the 40% of persons estimated to have autism and an intellectual disability and the large number of persons with autism who also suffer from epileptic seizures.


In what may be a major breakthrough for Autism Speaks, in the post Geraldine Dawson era, and a possible step forward in public understanding of autism disorders a high ranking Autism Speaks official, Michael Rosanoff, Autism Speaks associate director for public health research and scientific review, has acknowledged the heterogeneity of autism spectrum disorders in clear, unambiguous terms, in  a Detroit Free Press article Brain changes of autism may begin in the womb:

For anyone else, including other Autism Speaks officials who want to catch up to Mr. Rosanoff in understanding autism disorders, autism researchers and major media columnists interested in a thorough, scholarly view of autism spectrum disorders I strongly recommend Rethinking Autism: Variation and Complexity by Lynn Waterhouse. 

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. 

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!

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.

In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity.  Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012.  Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed.  Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU.  Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be.  Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.  

To everyone involved with protecting and saving our buddy Conor his Mom and Dad say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy:

Conor enjoys some Kermit Komfort this morning while sleeping and awaiting a trip to see our family physician.  It has been a very difficult week for my Buddy as we work through his seizure and medication issues. Hoping things turn for the better today!

My autistic son's second Grand Mal seizure, of which I am aware, happened when I was in an adjacent room less than 15 feet away this past Sunday. I heard the noises when his seizure began and recognized them this time for what they were. I jumped up immediately, laid him on his side and cushioned his head while his Mom called the excellent 911 emergency responders who took Conor to the local hospital, the DECH, for the excellent care and attention they have have always provided members of our family. (Including me during my recent hospitalization for a major asthma attack). 

 I was scared this past November when Conor suffered his first Grand Mal seizure. I was just as scared this second time. I can't believe that this can happen repeatedly without serious life threatening consequences especially if no one hears him during the night, or if it happens during swimming which he dearly loves. Conor was seen by a neurologist just 4 days earlier and we had, after some base line blood tests were done, started on the low dose end of a progressively heavier medication schedule. Hopefully as the dosage is increased and has time to take effect the seizures will cease. 

Autism, as portrayed by most autism "awareness" groups, is far removed from the reality of severe autism with intellectual disability and sezures/epilepsy. I know it and the APA wizards who contrived the DSM5 ASD know it. Life will be easier for them and the researchers who conduct autism research while excluding those with intellectual disability, a trend which they have followed for many years and which is now condoned by the DSM5. The difficult conditions that are usually found with the severely autistic and make life difficult for autism researchers and clinicians ... intellectual disability, self injurious behaviors and seizures will be reduced substantially by being relegated to the invisible category of intellectual disability in the DSM5. 

I look at the multitude of "autism" studies on Google Scholar and have no idea what most of them involve in terms of autism as a disorder or the serious conditions which are related to the severe forms of autism. I do know that very few of them address the severe realities faced by my son. I do know that when the APA spends several years "recompartmentalizing" the diagnostic criteria for autism and epilepsy to come up with the DSM5 ASD they are doing no one with severe autism any favors. Their efforts and funds would serve a far better purpose if they followed the lead of the emergency responders and hospital staff at the DECH who have treated Conor and cared for him so well. Focus on helping people with autism, particularly those most in need, and save the idle academic curiosity "autism" studies for your retirement.

Our entire family has had nothing but good experiences at the Doctor Everett Chalmers Hospital, the "DECH", in Fredericton and that trend continued this morning when we took Conor for blood tests at 7 am.  The tests were required by the consulting neurologist to establish some base lines before starting some new medications to address Conor's seizure activities.  We contacted the DECH yesterday to see if they could accommodate Conor with a direct entry to the blood works room without taking a number and waiting in line. We explained his autism, intellectual disability and tendency to have meltdowns when frustrated. The administrative staff were happy to oblige and the team that met us this morning were outstanding!  They knew exactly how to interact well with Conor and everything went perfect!  

Seizures and epilepsy are serious issues for persons with autism and their families as we learned first hand in our home on November 17, 2012 when Conor suffered a very serious seizure. Following is a publicity release issued in respect of Silently Seizing and author Caren Haines, RN (Haines also received input from Nancy Minshew MD) which I am pleased to publish on this site.  I encourage everyone to read this release and consider using any media or social media you can to further its distribution and awareness of seizure issues for persons with autism disorders.

Conor's EEG exam had been scheduled for yesterday as a result of his scary Grand Mal seizure a few weeks ago.  (Not that I am superstitious but I did wear my Tom Brady Patriots jersey to the EEG for good luck) The EEG techs indicated it would take time to get set up: about 20 minutes.  They hoped to get at least 45 minutes of readings after that.  With Conor's autistic disorder, profound developmental delays and sensory issues I questioned in my own mind whether they would be able to get 45 minutes before Conor started removing the head wrap with the connecting wires.  

My questions were answered positively when Conor provided approximately 70 minutes of readings without breaking a sweat! His pediatrician had consulted the neurologist involved and they decided on the best medication for Conor to take that would allow him to be drowsy (and calm) while interfering minimally with the readings.  His pediatrician, Dr. Messenger, provided clear instructions to me to give Conor his medication one hour before   the scheduled start time. Perhaps because of his own procedures, perhaps because we have met and discussed Conor and autism on several occasions over the years, he politely made sure Dad got the message and repeated the instructions twice.   The technicians and staff at the DECH EEG section were also outstanding.  We completed a service survey on leaving and rated our experience 10 out of 10! Conor's mom Heather also contributed to the successful outcome. She snuggled on to the hospital bed with Conor and stayed beside him throughout the process.

The star of the day though was Conor himself.  The techs allowed me to see his face on one of their visual screens. I could only see his eyes and above.   His eyes were open and he was calm throughout 70 minutes.  When it was over he left the hospital on his own steam holding our arms for support in the slippery snow storm conditions outside the hospital as we left.  We went through a Burger King drive through on the way home and rewarded Conor with a BK burger.  (Dad got one too!) Conor was quiet but content until he went to sleep at his regular time last night.

Small things can be a challenge with Conor. That is reality, Conor's autism reality, every day. Yesterday a big challenge, an EEG exam, was no problem for my buddy who provided 70 minutes of readings.   Meanwhile, last evening, Tom Brady led the Patriots to a thrashing of the upstart Houston Texans. Brady was excellent. Conor was our MVP though.