On Purple Day: We Need Awareness of Ties between Epilepsy, Migraine Pain, Autism and Intellectual Disability

The Complex Relationship Between Autism Spectrum Disorders and Epilepsy .... AND Intellectual Disability ... AND Migraine, Pain

Today is Purple Day intended to bring awareness about Epilepsy a condition which can be painful and life ending, creating a drastically shortened life expectancy, 30 years shorter for persons with autism spectrum disorder and epilepsy.  A third major element association with both ASD and Epilepsy is Intellectual Disability and all three of those have significant ties to Migraine Pain:

Chicken or egg? Does autism cause epilepsy or epilepsy cause autism?

• Based on several meta-analysis studies and pooled data review, autism and epilepsy tend to co-occur in about 30% of individuals.
• In children with ASD, intellectual disability (ID) is a major risk factor for developing epilepsy with an estimated risk of 8% for those without ID and as high as 20% in those with ID.4
• Seizures may first begin in adolescence or adulthood.
• Approximately 4-5 % of children with epilepsy will have ASD.5
•  It is becoming clear that ID is common whether we are dealing with children who develop autism first and then go on to develop epilepsy or children with early onset epileptic encephalopathies with autistic features such as tuberous sclerosis complex (TSC). Thus, there is a shared mechanism between autism, epilepsy, and ID.6

Migraine And Epilepsy Are Highly Comorbid.

Individuals with one disorder are at least twice as likely to have the other.1,4–7 Comorbid disease presents challenges in both differential diagnosis and concomitant diagnosis.8 When diseases are comorbid, the principle of diagnostic parsimony does not apply. Individuals with one disorder are more likely, not less likely, to have the other.

In the Epilepsy Family Study, among probands with epilepsy who were classified as having migraine on the basis of their self-reported symptoms, only 44% reported physician-diagnosed migraine.91 In the general population, 29% of men and 40% of women with migraine reported a medical diagnosis.12 The proportion of probands reporting a physician’s diagnosis of migraine was surprisingly low, given that all were already being treated for epilepsy.

Why is the comorbidity of migraine and epilepsy not recognized? Epilepsy may be viewed as a more serious disorder than migraine. As a result, the migrainous symptoms of patients with a diagnosis of epilepsy may have been overlooked or attributed to the seizure disorder.

Autism, Intellectual Disability and Pain/ Seizures : PURPLE DAY – MARCH 26

Parents of children and adults with autism, government and service providers should all be aware of the important connection, sometimes painful, sometimes fatal connection between autism and epilepsy.  March 26 2020 is Purple Day and anyone affected by autism, particularly autism with intellectual disability,  would be wise to visit web sites dedicated to creating genuine awareness of epilepsy. One I frequently visit is Epilepsy Foundation.

The World Health Organization has reported for many years that 50% of persons with autism also suffer from intellectual disability.  Those with autism w/o ID have a 9 year shortened life expectancy with depression and suicide being the primary triggering factors. As reported by Autistic UK  Persons with autism and intellectual disability have a 30 year, THIRTY YEAR, reduced life expectancy with the primary trigger of the early deaths being epileptic seizures.

Migraines sometimes accompany seizures and can occur without the more obvious signs of a grand mal//tonic clonic seizure:

Headache as a Consequence of Seizures

Headache and epilepsy share many possible clinical interrelationships. (See Table: Migraine and Epilepsy) The disorders may exist independently or may be associated in certain syndromes. Migraine may trigger epilepsy, or epilepsy may initiate headache.

Headache is commonly associated with seizures as a preictal, ictal, or postictal phenomenon, but it is often neglected because of the dramatic neurologic manifestations of the seizure. Patients with migraine-triggered epilepsy seek medical attention because of seizures, which may overshadow the migraine and be overlooked by both patient and physician. Headache can also be the sole or most predominant clinical manifestation of epileptic seizures, although this is a relatively rare situation.

My son Conor is not part of the "autism is a gift" community.  He brings us great joy and he is known for his incredible smile and enthusiasm for life (the Run, Jump, Fly Boy) but he has been on seizure medications for  a number of years and he has suffered a number of grand mal seizures that we know of.  It is also possible that he has suffered seizures at night that we are unaware of. 

Despite his joy of life Conor has suffered from actual pain, sudden, migraine pain as shown in the pictures below.  These pictures were taken with my camera on an athletic setting. With that setting you can take multiple pictures very quickly of persons engaged in athletic activities or in the case of these photos multiple photos of Conor on the swings within a few seconds. In these photos Conor was on the swings at his old grade school, on a Saturday morning, mild temperature, and almost no sound.  He was happy, very happy and then he wasn't.  Suddenly he suffered pain in his head and this is unfortunately not an uncommon occurrence for him or for other persons with autism, intellectual disability and seizures &/or epilepsy:

Parents of Autistic Children Communicated directly with Shawn Graham, No "Interpreter" Needed - Result: 400 UNB-CEL Autism Trained Teaching Assistants and Resource Teachers

This Autism Dad Says Thank You Shawn Graham

 Shawn Graham made promises to help autistic children in New Brunswick. He kept his word and autistic preschoolers and students are the better for it.  This is one father of an autistic 14 year old attending high school here in New Brunswick who knows how much Shawn Graham has done for our autistic children and I say .... thank you Shawn Graham. (2010, FANB)

Above is my thank you to Shawn Graham for all he did to help autistic children in NB during his term. Following  is the email I received from then Opposition Leader Shawn Graham in the lead up to the election which resulted in him becoming Premier Shawn Graham.  

His government implemented over the course of their 4 year term the training of 100 teacher aides per each year of their 4 year term which I highlighted below and which I specifically requested as a representative for the Autism Society New Brunswick.  

This is another example of why parent autism advocates accomplished specific focused goals by direct communication with government. We did not need a government financed "autism tour" with an interpreter who does NOT have adult autistic children to "interpret" or slant our needs for the PNB government. ... I do recognize that the political figures involved make a big difference as noted in our Thank Your to Shawn Graham who did a great deal to help autistic children in NB. Regardless we have to speak on our own behalf and focus on important goals.  The so  called "Autism Tour" is not the way to make progress for autism services iin NB ncluding the badly needed adult autism residential care and treatment services.

Bold highlighting added by H L Doherty

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Dear Harold:

Thank you for your letter and for sharing your concerns with me.  In our
Liberal election platform that will be released later this week, we are
committing to the implementation of the recommendations of the
Interdepartmental Committee on Autism released in November 2001.
Although we realize this document is now nearly five years old, it does
provide a basis on which to develop, in partnership with the
stakeholders, a strategy that will assist children with autism from
early childhood and into adulthood.

As well, we will take two concrete steps to address the immediate needs
of children with autism in two areas:  a case management process and
UNB-CEL autism training.

A new Liberal government will:

1.                  Integrate services for young children and their
families by enhancing and expanding the Early Childhood Initiatives
Program to ensure a smooth transition into public school for children
identified as at risk or those with special needs, such as autism.

2.                  Provide UNB-CEL autism training for 100 additional
teaching assistants and Methods and Resource teachers each year for four
years.

I commend you and the members of the Autism Society of New Brunswick on
your tireless advocacy on behalf of children with autism.  You are truly
making a difference in many lives.  Please feel free to contact me at
any time.

Yours truly,


Shawn Graham

Leader of the Official Opposition

Parent Autism Advocates Succeeded When We Spoke for Ourselves; We Didn't Need An Interpreter Telling Government What Our Children Needed

When the Stan Cassidy Centre Autism team was scheduled to be closed parents of autistic children spoke up loud and clear.  We didn't need a professional interpreter with no academic history, who never provided 24/7 parental care for an autistic child speaking on our behalf.

We were not funded in our advocacy by government and we were  not worried about lobbying for personal contracts with NB Health or NB Social Development.  We spoke up with no conflicts of interest and based on our own actual 24/7 experience with raising autistic children ... and we got the job done.

The October 4 2005 article below is followed by some of the published commentaries of parent autism advocates that played a significant role in getting the job done.

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October 4 2005

Rehab centre to treat autistic kids 

STEPHEN MACGILLIVRAY PHOTO The Daily Gleaner

Children with autism will continue to be treated at the Stan Cassidy Centre for Rehabilitation. The board of directors of River Valley Health last week reversed a decision made earlier this year - at the administrative level - to stop treating children with autism who do not have a physical disability. The policy was to take effect in 2006. "We're elated," said Luigi Rocca, president of the Autism Society of New Brunswick. "We weren't at all happy with the original decision," he said.

Autism is a serious neurological disorder that typically appears during the first three years of life and has a profound effect on communication, social interaction and sensory integration. Autism, an incurable condition believed to be genetic in origin, affects about one in 500 individuals worldwide and is four times more common in boys than girls. Intense behavioural therapy has been found to help improve social and learning abilities, but experts say that for most autistic people, the condition continues to have some impact throughout life. The original decision to discontinue treatment of some children with autism was announced in May. At a recent meeting of more than 30 stakeholders from across the province, John McGarry, president and CEO of River Valley Health, apologized for the lack of dialogue that led up to that May announcement. 

The Stan Cassidy Centre for Rehabilitation is a tertiary care centre that provides services to children across the province in rehabilitation including speech language pathology and occupational therapy. Diane Morrison, senior vice-president of River Valley Health, said the centre has treated children with autism for many years and built up a level of expertise. "They were looking at their resources and how the resources were being utilized," she said about the initial decision. "Like most services there was more demand than you have the resources to meet." Children with autism represent about 20 per cent of the case load at the centre and required more than 20 per cent of resources to treat, she said. Morrison said it was initially thought that that children with autism could be better served elsewhere, particularly children without a tertiary rehabilitation requirement. If a child with autism did have an accompanying rehabilitation requirement they would still have been seen at the centre, she aid. Morrison said the meeting with stakeholders was positive. Following that meeting, and after further discussion within the organization and at the board table last week, the decision was made to continue the service, she said. 

The board motion to continue the service also called for the creation of a provincial working group to develop recommendations that will help ensure the Stan Cassidy Centre's autism services are sustainable and integrated into treatment across the province. Morrison said it was concerns about sustainability that prompted the May announcement. She said if the centre has just one speech language pathologist and one occupational therapist then the service is fragile. "We need to make sure that we can put in place plans for sustainable service," she said. "We are trying to take systemwide approach to this." Morrison declined to comment on whether the regional health authority would need additional funding from the province to make the autism service sustainable. "I don't want to presuppose the recommendations to come out of the working group," she said. Another meeting with stakeholders is planned for Oct. 14. 

Rocca said the dispute has highlighted the overall lack of resources allocated to autism in New Brunswick. The Stan Cassidy Centre for Rehabilitation does not have enough resources on its own to deal with autism, he said. Rocca said that stakeholders are pleased that when they complained they were taken seriously by officials at River Valley Health. He said they quickly reversed their decision and did not let it drag on for months. "We are starting a meaningful dialogue," said Rocca. "We will be involve in finding a solution. "We hope we get the same response from the provincial government."

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Dear Minister Robichaud: 

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

Your prompt attention to this issue would be greatly appreciated. 

Sincerely, 

Luigi Rocca

President

Autism Society of New Brunswick

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 18, 2005

Children with autism have been let down

It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.

To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.

Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.

. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.

Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.

DAWN BOWIE

Maugerville

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NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 19, 2005

Centre's expertise valued by autistic community

The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:

I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.

For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.

Eliminating this service is a an absolute deal breaker.

Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.

Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.

I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.

LILA BARRY

Miramichi

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Daily Gleaner | Readers' Forum

As published on page C7 on July 19, 2005

Decision on autistic children doesn't add up

This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.

When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination. Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.

You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available. You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service. As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.Your excuse has become a self-fulfilling prophecy.

You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre. After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.

Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.

Harold L. Doherty 

Fredericton

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My Son With Autism and Cognitive Challenges Benefits GREATLY from Volunteer Work

This FB memory is one of my favorites - Conor washing windows at the Willie O'Ree Place. Conor benefits GREATLY from being able to perform volunteer work that he does there. He benefits physically and emotionally his post 21 aging out of school anxiety levels were nipped in the bud with his Window washing work. The past 2 years I have seen the EVIDENCE of the value he receives. (Unlike non evidence based NBACL and Autism Connections Fredericton who are trying to take such opportunities away from my son and others in similar cases) Conor misses his window washing work when he can't for various reasons get to do it on specific days.

2 Years Ago

See Your Memorieschevron-right

Harold L Doherty is at Willie O'Ree Place.

March 13, 2018 · Fredericton, NB · 

which he does there and he got down to scrub the bottom window in this picture when I arrived. Yes he likes this work as you might be able to tell from his smile.

Would you recommend this place?

FACE - Parent Autism Advocacy in New Brunswick - We Got Things Done

Shuffling through some boxes of documents today and came across a FACE wall poster. As Dawn Bowie said last December "we accomplished a lot". We weren't receiving funding from the Province of New Brunswick and were not restricted by government policy. We addressed the needs of children with early autism intervention; autism trained school aides and reversal of the decision to close the Stan Cassidy autism team. You probably won't see any mention of us in the Autism Connections Fredericton Library or in any ACF reports or Executive Director speeches. We didn't advocate for a centre or salaries for ouselves. We fought directly for evidence based services and treatments for autistic children, students, youth and adults. I am proud of what we did and what WE accomplished and I thank all parents who were involved. If anyone is a former FACE member please feel free to respond with a comment and your name.