Team Trudeau Has Ignored Its 2015 Commitment to a National Autism Strategy

Fredericton Liberal Matt DeCourcey: Liberal Party Committed to A National Autism Strategy Addressing Access to ABA/IBI

Fredericton Liberal Candidate Matt DeCourcey

Email received October 2, 2015 from Fredericton Liberal Candidate Matt DeCourcey stating Liberal Party supports creation of a National Autism Strategy addressing ABA and IBI access and coverage under Medicare:

Hi Harold,

Thank you for the email. I apologize for the delay in my response. I want to let you know that the Liberal Party and I fully support the creation of a national autism strategy. Our party recognizes that in certain provinces, autism treatments, including ABA and IBI are covered under provincial Medicare programs and are more readily available in other provinces. Health care access challenges like these are something that the Liberal Party is committed to addressing.

First and foremost, we need a conversation that goes beyond simply mirroring previously made commitments. We need a partner in the federal government that is committed to innovation and collaboration with the provinces and territories to achieve a modern, efficient, equitable system of universal health care. The Liberal Party is committed to that collaboration.

A Liberal government will re-engage the provinces after 10 years of Stephen Harper neglect. We will meet on Canadian health care and negotiate a new Health Accord with the provinces and territories, including an agreement on long-term funding. Furthermore, our party is committed to pan-Canadian collaboration on health innovation. We will work with provincial jurisdictions to overcome obstacles to innovation in health care delivery and access.

Thank you again for your email. I hope that I’ve helped to clarify the Liberal Party’s position on support for those living with autism. If you have any further questions please reach out.

Best,

Matt

NEVER ASSUME !

NEVER ASSUME!

NEVER ASSUME. This morning I heard a hard coughing noise from Conor who was having breakfast in the next room and watching a movie on tv. Alarm bells went off in my mind and I could hear the words NEVER ASSUME as I jumped up to check on him. He was OK and Dad fixed the coughing problem with a glass of cold water.

 I never assume anything anymore after Conor suffered gran mal seizures but I could also literally see the face of my former boss the late J. Gordon Petrie and hear him speaking the words NEVER ASSUME. I was working with his law firm in the mid 80's. Shortly after I started he assigned me a file to look at and I made an assumption about one aspect of the file. Gordon spoke with me calmly but firmly in a 1 on 1 meeting that evening and gave me a look only Gordon could do and said ... NEVER ASSUME. I will never forget those words and they come in handy in all aspects of life especially providing care for Conor with his complex autism, limited speech and epilepsy.

Important Information for Allleged "Autism" Researchers

Important information for autism researchers seeking to capture the full autism spectrum of disorders in their studies:

"much of what is known about the older autistic adult population is based on (1) self-report studies, which exclude those without the ability to participate through survey methods (e.g. Lever & Geurts, 2016b; Wise et al., 2017)"

Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults

No more window washing: COVID-19 leaves autistic man longing for work

No more window washing: COVID-19 leaves autistic man longing for work

Moncton Times & Transcript  Clara Pasieka 

https://tj.news/story/101226929?ref=linkShare&fbclid=IwAR2kWYT_fBn9mB0EQySNTQd6oXMNLNeU2c3uBOCHZ1GAKhY7CK02CRI7CVQ

This is the second in a two-part series looking at the impact of self-isolation on people with autism and their families.

Conor Doherty loves washing windows. Over the last couple of years, he has been able to spend 75 to 80 per cent of his days doing just that. But COVID-19 means he can’t.

Doherty, 24, who has autism as well as an intellectual disability and epilepsy, has been washing windows through Jobs Unlimited, an organization that helps people find jobs or volunteer opportunities, supported by an aide when needed.

When he aged out of the education system at 21, his father, Harold Doherty, said nobody was sure how that would go over. “Things like routine and all that are important to him, and he can get anxious at times,” Harold

said. But window washing has been a great fit, his father said. “He gets to work out very strenuously for most of that time period and burns off a lot of energy. He has a very, very clear routine, he has to do certain tasks.”

But that routine has been absent for the last couple of weeks with Jobs Unlimited pausing their job placement activities, like many organizations, in light of COVID-19.

“For the past few days, he’s started engaging in some screaming activity,” Harold said. “It’s because of anxiety over his routine being broken, his expectations and even the ability to physically work off energy.”

Conor is barely verbal, but has been saying ‘’Willie O’Ree” (for Willie O’Ree Place, in Fredericton, is where he wants to clean windows) and “Jobs” for the past several days, his father said. His anxiety about being away from his routine is growing, Harold said. “Probably twice a day now, he is doing some screaming,” he said, noting his son has done the same at other points of his life when anxious.

The family is trying their best by going outside for walks and offering Conor movies and other occupying activities indoors. “Jobs Unlimited had him occupied and busy doing useful things that he enjoys doing,” Harold said. “That’s what he misses the most right now -- that type of positive work activity,” said Harold Doherty.

People used to come to see Conor and talk to him while he was working as well, that’s also gone,his father said. “[Cleaning windows] might not sound glamorous but it’s an important part of his life,” said Harold Doherty.

Like many parents with children on the spectrum, he said explaining what is happening at this time to his mostly non-verbal son has been difficult.“I try to reassure him that he will be going to Jobs Unlimited and Willie O’Ree when they reopen. It is not easy to explain the coronavirus situation to him. I basically tell him the whole world is sick with the flu but it will get better and I will take him to the Willie O’Ree and Jobs when they reopen.”

– This initiative is funded by the Government of Canada. Cette initiative est financée par le gouvernement du Canada

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

---------------------------------------------------------------------------------------------	9/6/06

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