Friday, March 30, 2018

Autism DISORDER Awareness Day is April 2




I  regret to have to announce that April 2 is declared by me,  (and anyone else who is tired of pretending otherwise) that autism is actually a DISORDER with serious life shortening consequences for many who do, or will, suffer from the "light it up blue" disorder. Here in Fredericton New Brunswick World Autism Awareness Day will turn the Green City Blue with Blue Lights celebrating autism.  It is a pattern that will be followed around the world as the public is conditioned to ignore the hard realities of autism and will not even be told that autism is a disorder.  

While the talents of a few very high functioning persons like Temple Grandin, most of whom would have been diagnosed with Aspergers prior to the DSM5 merger of these related conditions into a spectrum. are celebrated the 44 % (US CDC) to 50% (WHO) with intellectual disability will be ignored for fear of "stigmatizing" those without intellectual disability .  Self injurious behaviours, risks from wandering,  and the large numbers of persons with autism spectrum disorders are not likely to be mentioned.  The need for a range of learning placement options with specialized, evidence based instruction and sensory adjusted will not be mentioned anywhere in NB. The need for decent, humane adult autism residential care and treatment will not be mentioned either as NB youth and adults with autism continue to be sent to live in hospital wards or at the Donald Arseneault (Restigouche) Psychiatric Hospital in Campbellton on NB's northern border as far as possible from the  vast majority of NB families. 

It is highly unlikely that the smiling, happy faces of those who light it up blue on April 2 will pause to mention that adults with autism disorder and intellectual disability will also suffer from epilepsy which is the leading cause of their drastically shortened life expectancy  ....  30 years shorter than the general population; as reported by a large high quality Swedish study made known to anyone interested by the UK Autism charity Autistica in its report Private Tragedies, Public Crisis

Please have fun when you are celebrating autism as a gift on April 2.  I do not wish to take that away from anyone but take the time some time, some day to remember that autism is a disorder with very serious challenges and life shortening consequences for many.




Sunday, March 25, 2018

Autism Awareness on Purple Day - March 26


March 26  is officially Purple Day in Canada. Founded by Cassidy Megan of Nova Scotia, it is a day to wear purple to increase epilepsy awareness in Canada, around the world, and in homes like ours where our son Conor, like many with autism disorder and intellectual disability, also suffers from epileptic seizures.  Given the substantially greater numbers of persons with autism, particularly when they also suffer from intellectual disability who suffer from epilepsy,  autism awareness and epilepsy awareness events should make the high percentage of "co-morbidity" between autism and epilepsy known to persons and their families who suffer from either condition. 

This co-morbiditiy is particularly more important because of studies and reports showing that persons with autism, intellectual disability and epilepsy  die on average 30 years sooner than persons in the general population as made known in the UK Autism charity Autistica report .Personal tragedies, public crisis: 




Epilepsy in autism

 Between 20% and 40% of autistic people also have epilepsy and this rate increases steadily with age – in contrast to a one percent prevalence rate in the general population. 10 In the typical population, the risk of epilepsy is greatest in a child’s first year, decreasing in risk through childhood, then remaining stable and not increasing again until old age. 11,12,13 In the majority of autistic people who develop epilepsy, their seizures do not appear until their teenage years, much later than average.5,14 This suggests that the underlying triggers of epilepsy may be different in autism. 

Autistic adults who also have a learning (Intellectual) disability have been found to be almost 40 times more likely to die from a neurological disorder relative to the general population – with the leading cause being epilepsy.3 Despite the very high prevalence of seizures in autistic people and the high death rate from epilepsy, there has been virtually no research to establish whether treatments used for epilepsy are safe or effective in the autistic population. More research is urgently needed into the relationship between epilepsy and autism and the impact of epilepsy over the lifespan in autistic adults.

Our son Conor had suffered from absence seizures that we were awae of for several years.  In 2013-2014 he suffered 2 tonic-clonic seizures, formerly known as grand mal seizures which scared the heck out of me; alone at home with him at the time.  He also suffered a major adverse reaction (hospitalized for 2 weeks, including 6 days in the Intensive Care Unit) to his seizure medication at that time,  (Lamotrogine), which is reported to be highly effective for most who take it to control and prevent seizures.  As has been reported by SFARI (Simon's Foundation Autism Research Initiative) teens like Conor at the time (now 22),  with autism and intellectual disability, are at increased risk of epileptic seizure:

"Children with autism who are older than 13 years and have low intelligence are at the greatest risk of having epilepsy, says one of the largest epidemiological studies on the issue to date1Children are typically diagnosed with epilepsy after having at least two seizures — uncontrolled surges of electrical activity in the brain. About 2 percent of the general population has epilepsy2. Most studies peg its prevalence among people with autism at 30 percent.
The new study, published 4 July in PLoS One, breaks down this prevalence by age. It finds that among children with autism, up to 12.5 percent of children aged 2 to 17 have epilepsy. The rate is largely driven by epilepsy in children aged 13 to 17, who have more than double that prevalence. The study also found that low intelligence — defined as having an intelligence quotient (IQ) below 70 — is associated with a cluster of symptoms seen in people who have both epilepsy and autism. The symptoms include difficulty with daily living, poor motor skills and language ability, regression and social impairment."
NOTE: Epilepsy Canada's web site has important facts and information about epilepsy including types of seizures, diagnosis and treatment, and generally how to cope with seizures. 

March 26 is officially recognized across Canada as Purple Day thanks to the 2012 Purple Day Act:



Purple Day Act
 S.C. 2012, c. 13
Assented to 2012-06-28
An Act respecting a day to increase public awareness about epilepsy

SUMMARY

This enactment designates the 26th day of March in each and every year as Purple Day”.
Preamble
Whereas the Parliament of Canada wishes to assist in efforts to educate and increase awareness, among members of the public, about people living with epilepsy;
Now, therefore, Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:
                                           
Short title
1. This Act may be cited as the Purple Day Act.

PURPLE DAY

Marginal note:Purple Day
2. Throughout Canada, in each and every year, the 26th day of March is to be known as Purple Day.
Marginal note:Wearing purple
3. On the 26th day of March, people are encouraged to wear the colour purple to indicate their support for people with epilepsy and to increase public awareness of this disorder.
Marginal note:Not a legal holiday
4. For greater certainty, Purple Day is not a legal holiday or a non-juridical day.

Wednesday, March 21, 2018

Autism Spectrum Disorder - Things You Won't Hear Discussed On Autism "Awareness" Day




Conor  and Dad on Conor's 2nd Birthday.  Conor received his autism diagnosis the next day, approximately 6 months after his Mom insisted we visit our family doctor about his developmental delays. Public autism awareness of the spectrum and disorder realities of autism has, IMHO, regressed since then.  Governments, entertainment media and community, autism and disability groups ... even autism researchers .... have downplayed the harsher realities of autism disorders while celebrating high functioning and gifted persons with autism. 

Set out below is the full description of Autism Spectrum Disorder as set out in the DSM5. (Source Autism Speaks - What is Autism: DSM-5 Diagnostic Criteria). The failure to discuss the harsher realities of Autism Spectrum Disorder contributes to LACK of awareness of autism realities; realities which will probably once again be overlooked in the flood of blue lights and superhero costumes. ... Oh and  by the way autistic children become adults and they do not grow out of autism.  Many will require different levels of permanent residential care, education and treatment. A challenge governments and community autism groups will likely ignore totally as they usually do on Autism Awareness Day, April 2. 

 Excluded from  mention on Autism "Awareness" Day, April 2 are the various impairments and conditions that frequently accompany autism including intellectual disability and epilepsy. If intellectual disability is mentioned it will be downplay the existence of intellectual disability on the autism spectrum as one very high functioning autistic speaker after another offers their assessments of what it means to be autistic.  The word "Disorder" if mentioned at all will be challenged on the premise that "autism" is really a gift. Nor will mention be made of  the diagnostic directions to specify various related conditions ( which would include the large numbers with intellectual disability and epilepsy)

Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)



Autism Spectrum Disorder           299.00 (F84.0)
Diagnostic Criteria
A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Specify current severity:
    Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).
B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
Specify current severity:
    Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).
C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)
Table 2  Severity levels for autism spectrum disorder
Severity level
Social communication
Restricted, repetitive behaviors
Level 3
"Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches

Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2
"Requiring substantial support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and how has markedly odd nonverbal communication.

Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1
"Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Thursday, March 15, 2018

Looking Ahead to More Great Big Giant Trail Walks with my Buddy Conor in the Green City, Fredericton



It has been, and still is, a challenging winter with Nor'Easters hitting every other day.  Has me looking forward to another summer in Fredericton, the Green City, and Great Big Giant Trail Walks with my buddy Conor like this one on June 21, 2012. 















Tuesday, March 6, 2018

News Release: MEDICARE FOR AUTISM NOW!



News Release: March 5, 2018:  MEDICARE FOR AUTISM NOW SOCIETY (MFAN) responds to Government of Canada budget funding for autism.
“$20 million of taxpayers’ money spread over five years to do what? Create a data base and programs to reduce the “stigma” of those living with autism spectrum disorder? REALLY?”, says Jean Lewis, Vancouver parent-advocate, co-founder and director of MFAN.

Eighteen years ago, our courts found that science-based treatment, ABA (applied behaviour analysis) was “medically necessary” and “there were no competing effective therapies”. This remains true today.

Eleven years ago, the Canadian Senate, after extensive study, found that “families living with autism were in crisis”.

This crisis continues to grow exponentially.
Today, according to Autism Speaks, autism spectrum disorder is the fastest growing and most commonly diagnosed neurological disorder in our country. An estimated one in 68 children in Canada are affected.

Two years ago, over 2000 delegates to the Liberal Party of Canada national convention overwhelmingly and enthusiastically passed a priority policy resolution instructing the Government of Canada to work with all provincial and territorial governments to ensure inclusion of ABA treatment for autism spectrum disorder within their respective Medical Services Plans, and, further, to provide funding to each province and territory to fully cover the costs associated with the provision of ABA treatment of autism spectrum disorder.

“Science-based, medically necessary autism treatment has existed but been financially inaccessible in Canada for more than 20 years,” says Harold Doherty, Fredericton parent -advocate and MFAN director, “What will it take for the Government of Canada to deal seriously with this national epidemic of staggering proportions?”

-      30 –
For further information, contact Jean Lewis 604-290-5737 jean.lewis@telus.net

Sunday, March 4, 2018

Autism Mother Katharine Cukier Calls Out Trudeau Liberals and Miriam Foundation for Betrayal of Autistic Children, Adults and Their Families

Katharine Cukier is the mother of an autistic son in Quebec who has called out the Trudeau Liberal Government  for donating $20,000,000 to for 2 organizations, one in Quebec and one in BC to "HELP" Canadians Impacted by Autism by paying for two "autism resource" web sites.  I agree with Ms Cukier. 

As a parent autism advocate I have advocated for early evidence based autism intervention, autism trained teachers and teacher aides and autism specific learning placement options and adult autism residential care and treatment.  I have asked my son's alleged MP Matt DeCourcey several times if the Trudeau government will be implementing the #WPG2016 E-03 Policy Resolution Medicare Coverage for the Treatment of Autism which was passed with strong support by the Liberal membership in Winnipeg in 2016 but he has not had the common decency to answer my question. 

Visit  Katharine Cukier's  Facebook page for her series of powerful comments on the falsehoods and betrayal of autistic persons and their families by the Miriam Foundation and the federal government.

You offer me a $10 million dollar website, when the best outcome for my son with autism is to DIE before me? Give me a fucking break. Totally unacceptable.
ttps://globenewswire.com/news-release/2018/02/27/1396511/0/en/Pacific-Autism-Family-Network-and-Miriam-Foundation-Receive-Federal-Funding-to-Help-Canadians-Impa...
See More

Friday, March 2, 2018

Will Liberal Government Act on Liberal Party Canada Call for Medicare Coverage for the Treatment of Autism?

Harold L Doherty
63 Alder Avenue
Fredericton, NB



Conor Doherty displaying his medal for best smile
received at Leo Hayes High School, Fredericton
.


March 2, 2018

Matt Decourcey, MP
Fredericton, New Brunswick

Re  #WPG2016 Liberal Party Canada Resolution E-03
       Medicare Coverage for Autism Treatment 

Dear Mr. Decourcey:

I am writing to you again, as a follow up to my letter of February 2, 2018, on behalf of my son Conor who is, theoretically at least,  represented by you in the House of Commons. Conor suffers from severe autism disorder, intellectual disability and epilepsy a very common combination of conditions among persons on the autism spectrum. In my Feb 2 letter I informed you of the results of autism research, particularly a recent high quality Swedish study reported, and brought to public attention, in a publication by Autistica, the respected UK Autism Research Charity, Personal Tragedies, public crisis. The urgent need for a national response to early death in Autism.  Among the many persons with autism, intellectual disability and epilepsy early death arrives 30+ years earlier, on average, than among persons in the general population. I asked you whether the current Liberal government intends to act to implement #WPG2016 Resolution E-03, passed with strong support which called for Medicare coverage for the treatment of autism.  Since then I have received 2 of your self promotion publications but I have not received an answer to my question. Resolution E-03 is attached below following 2 Hansard statements by highly respected former Liberal MP's the late Andy Scott, Fredericton and Shawn Murphy, Charlottetown.  

I ask you again, on behalf of my son Conor Doherty:

Will this current Liberal government act on and implement #WPG2016 Resolution E-03 calling for Medicare Coverage for Treatment of Autism?

Respectfully,

Harold L Doherty
Conor's Dad
Queen Elizabeth Diamond Jubilee Medal Recipient (Autism Advocacy)

----------------------------------------------------------------------------------------------------------------

APPENDIX A

M-172 — MAY 15, 2006 — MR. SCOTT (FREDERICTON) — THAT, IN THE OPINION OF THE HOUSE, THE GOVERNMENT SHOULD CREATE A NATIONAL STRATEGY FOR AUTISM SPECTRUM DISORDER THAT WOULD INCLUDE: (A) THE ESTABLISHMENT, IN COOPERATION WITH PROVINCIAL GOVERNMENTS, OF NATIONAL STANDARDS FOR THE TREATMENT OF AUTISM SPECTRUM DISORDER AND THE DELIVERY OF RELATED SERVICES; (B) THE STUDY, IN COOPERATION WITH PROVINCIAL GOVERNMENTS, OF THE FUNDING ARRANGEMENTS FOR THE CARE OF THOSE WITH AUTISM SPECTRUM DISORDER, INCLUDING THE POSSIBILITY OF TRANSFERRING FEDERAL FUNDS TO ASSIST PROVINCIAL GOVERNMENTS TO PROVIDE NO-COST TREATMENT, EDUCATION, PROFESSIONAL TRAINING AND OTHER REQUIRED SUPPORTS FOR CANADIANS WITH AUTISM SPECTRUM DISORDER WITHOUT UNREASONABLE WAIT TIMES; (C) THE CREATION OF A NATIONAL SURVEILLANCE PROGRAM FOR AUTISM SPECTRUM DISORDER TO BE MANAGED BY THE PUBLIC HEALTH AGENCY OF CANADA; AND (D) THE PROVISION OF FUNDING FOR HEALTH RESEARCH INTO TREATMENTS FOR AUTISM SPECTRUM DISORDER.

APPENDIX B

"HEALTH
40TH PARLIAMENT, 2ND SESSION
EDITED HANSARD • NUMBER 020
FRIDAY, FEBRUARY 27, 2009
HEALTH

HON. SHAWN MURPHY (CHARLOTTETOWN, LIB.):
MR. SPEAKER, ON DECEMBER 5, 2006, EVERY MEMBER OF THE HOUSE, INCLUDING THE PRIME MINISTER, SUPPORTED MOTION NO. 172. THE MOTION DIRECTED THE MINISTER OF HEALTH TO CONVENE A MEETING OF THE PROVINCIAL HEALTH MINISTERS WITH THE OBJECTIVE OF DEVELOPING A NATIONAL STRATEGY ON THE TREATMENT AND SUPPORT OF CANADIANS WITH AUTISM. UNFORTUNATELY, THE PREVIOUS MINISTER OF HEALTH AND THE PRESENT MINISTER OF HEALTH HAVE TOTALLY IGNORED THIS MOTION.

MY QUESTION IS FOR THE PRESENT MINISTER OF HEALTH. THIS IS A VERY IMPORTANT QUESTION AND CANADIANS ARE LOOKING FOR AN ANSWER. HOW LONG DOES THE GOVERNMENT INTEND TO IGNORE CANADIAN FAMILIES DEALING WITH AUTISM?"

APPENDIX C