Dear Elected Representatives: New Brunswick Needs Adult Autism Residential Care and Treatment

Dear Hon. Premier Gallant, Deputy Premier Horsman,Speaker Collins,  Ministers, Party Leaders and Government Advisers:

Re New Brunswick's Lack of Adult Autism Care:

I am sure that you are all grappling with important issues in these weeks following a provincial election. Many issues have generated intense discussion and serious attention from all of our public leaders.  The issue of adult autism care however was not one of those issues. Neither the current governing Liberal Party nor the previously governing Conservative party mentioned autism in their platforms.  The Green Party did propose regional autism group homes which would certainly help those with autism spectrum disorders who suffer from light to moderately severe autism challenges .  Only the NDP recognized the need for an autism center in New Brunswick which could provide treatment and permanent residential care for those, like my son, with severe autism disorder, profound developmental delay (intellectual disability) and epileptic seizures the latter two conditions being commonly associated with severe autism disorders.  

It is difficult to understand why our governing parties and their leadership have refused to take the steps necessary to help adults with autism lived decent, secure lives in New Brunswick. There can be no dispute about the need to address this issue.  In a province where the expressions "community" and "inclusion" are used like currency the approach to adult autism care has been to banish autistic youth and adults to the Regional Psychiatric Hospital in Campbellton on our northern border with Quebec and in some cases out of the province to the Spurwink facility in Maine.  It would be much more humane, and much more in keeping with the values that I believe all New Brunswickers share, to keep our autistic adults closer to home, closer to their families in group homes as suggested by the Green Party and in cases of greatest severity in an autism specific center as indicated in the NDP election platform. 

New Brunswick has achieved international recognition for the steps it has taken in early intervention autism services, most recently in the Summer 2014 Newsletter of the Association for Science in Autism Treatment which interviewed Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell the intellectual architect of NB's autism model.  The newsletter interview mentions the role of parents in advocating for the establishment of the early autism model.  As one of those parents I can also confirm that we advocated with some success for the autism specific training of teacher/education aides and resource teachers to work with autistic students.  The development of the  program for training our educational resources has included a leading world expert in the area Dr. Eric V. Larsson.

 In addition to these resources NB also has the  Fredericton based Stan Cassidy Centre autism team which has been a critical tool in addressing the needs of autistic children and youth with tertiary care level challenges. Fredericton is also the home of the UNB-CEL autism intervention program which developed the autism program that trained most of NB's early intervention workers and school aides.  These successes can provide the base for development of a decent, humane and secure adult autism care system in New Brunswick.  It would save money currently being spent in Maine and live up to the community and inclusion cliches which sound so very good and which do reflect NB values; values which unfortunately have not prevailed in providing for adult autism care in NB.

Paul McDonnell Ph.D. is the person without whom the early and school year autism successes for which this province has been recognized would not have happened. In 2010 in a CBC interview he described the need for a NB adult autism care system and what such a system should look like:

"What remains to be done? While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups.Our greatest need at present is to develop services for adolescents and adults.

What is needed is a range of residential and non-residential services and these services need to be staffed with behaviorally trained supervisors and therapists. Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities."

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision.That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dymamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff.

When we, as parents guided by Prof. McDonnell's autism expertise, advocated for early intervention services there were many naysayers who opposed our efforts both within and outside government advisory circles even some in our autism community. They were wrong.  We succeeded and we will continue the fight for decent youth and adult autism care and treatment services in NB.  

We ask all public decision makers on all sides of the legislative aisles to now show the initiative and leadership to get this job done to extend NB's internationally recognized model to provide care for NB's autistic youth and adults.

Respectfully,

Harold L Doherty

Conor's Dad

Joy of Conor 2014

I will not pretend, I will never pretend, that autism is just a different way of thinking.  Heather and I love our son too much to lie to the world about the nature of his autism realities, his severe autism, intellectual disability and epileptic seizures.  Like many parents of autistic children I believe it is in his best interest that the world knows the realities  of the complex disorder he endures and that often causes him to suffer and puts his life at risk.  I can face his autism realistically while appreciating every ounce of the joy he himself  brings to our lives. I can marvel at his ability to laugh and hug and enjoy life even though I often see him in pain.  

Conor himself enjoys life and brings us great joy  and with his mother I will always try to return that joy.   I will fight those who misrepresent the disorder, and the at times very harsh symptoms, from which he suffers,  I will NOT back down and .... I will enjoy every bit of the great joy he brings us every day.

Here are some 2014  snap shots of the joy we call Conor.

DSM5 ASD Criterion D: No Clinically Signifcant Impairment in Current Functioning = No Autism

The DSM5 is certainly open to criticism; particularly in its combining of the pervasive developmental disorders into one Autism Spectrum Disorder ignoring the very large numbers of persons with DSM-IV Autistic Disorder who also suffer from Intellectual Disability.  One point which did make sense in the Autism Spectrum Disorder diagnostic criteria though is the one that is routinely ignored by those who glorify autism disorders ... Criterion D (underlining added):

Diagnostic Criteria for 299.00 Autism Spectrum Disorder

D.Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

The subscribers to the irrational view that autism disorder, a mental health disorder diagnosis, is not really a disorder after all are able to maintain their beliefs by ignoring reality particularly the realities faced by those with severe autism disorders.  They routinely claim every historical genius or artistic talent as an "autistic".  They argue for the purity of the autism spectrumm "condition" by pretending there intellectual disability is just a coincidence and has nothing to do with autism.  In that regard of course they are on the same page as the professionals who separate ID and ASD and call them comorbid conditions.  They fall off that page though and put distance between themselves and the autism health care professionals by ignoring the plain wording of the DSM5 ASD Criterion D.  

Unfortunately a Jerry Seinfeld has only to speak and his words are heard and debated around the world. JS "migh be autistic" and that is good enough for those who want to put distance between themselves, or their family members, and the intellectually disabled and impaired in their everyday life activities at the severe end of the spectrum were autism is exactly what it has always been ...  a disorder.

Very high functioning persons claiming to be autistic must be able to demonstrate, as stated in DSM5 299.00 Autism Spectrum Disorder  that the DSM5  autism symptoms cause  .... . clinically significant impairment in current functioning.  Otherwise they should not receive an ASD Autism Spectrum Disorder diagnosis and should not claim to be autistic. 

The Seinfeld-Descartes Autism Diagnostic Tool: "I think I am Autistic therefore I am Autistic"

The Seinfeld-Descartes Autism Diagnostic Tool: I Think I Am Autistic Therefore I Am Autistic

Many, especially many with very, very high functioning autism diagnoses have embraced Jerry Seinfeld's new test for autism "conditions" one that the great comic borrowed from philosopher Rene Descartes:  "I think I am autistic, therefore I am autistic".

With the Seinfeld-Descartes diagnostic tool it is no longer necessary for those who want to join the truly amazing autism club to obtain one of those pesky medical diagnoses.  Nor will it be necessary to demonstrate the presence of that nasty Criterion D in the DSM5 Autism Spectrum Disorder:

D. Symptoms together limit and impair everyday functioning. 

I am not aware of what limits or impairments that the extremely rich successful comic and family man Jerry Seinfeld has in everyday functioning. For that matter it is not clear what impaired everyday functioning has ever been exhibited by many claiming to be autistic, including former free ranging Aspergians but it doesn't matter in today's world.  Jerry Seinfeld's speculation about being autistic is enough for him to receive a warm embrace from the very high functioning autism self advocacy world and the mainstream media.

Seinfeld-Descartes Autism Diagnostic Tool - I think I am autistic therefore I am autistic.  JE Robison and Ari Ne'eman couldn't have asked for a better Christmas present.

My Son With Autism Disorder And Jerry Seinfeld Have Nothing In Common; Not Even An Autism Disorder Diagnosis

(Grainy) Composite Photo 0f Jerry Seinfeld by Harold L Doherty, 

Moncton Coliseum,  February 2012, 2 Years Before His Revelation That 

He "Might" Be "On "The Autism Spectrum"

Picture by Harold L Doherty of My Son Conor Doherty On His 2nd Birthday, The Day Before His Autism Disorder Diagnosis Was Received After Six Months Of Tests And Pediatric Observation

Jerry Seinfeld has revealed, at age 60,  that he thinks he might be "on the autism spectrum".  He may be right, I don't know and won't know unless he seeks a professional assessment and makes the result of that assessment known to the public.  Jerry Seinfeld is one of the great comic geniuses of our times, IMHO, and I and am a huge fan, which is why I travelled with Conor's older brother, Brandon, to see Jerry Seinfeld perform at the Moncton Coliseum 2 years ago.  (Thanks also to Charlotte and Luigi for their hospitality that evening).

 We were not disappointed and I am reminded of his amazing social observation based jokes everytime I "have a coffee".  I am, and am sure I always will be, a Seinfeld fan but I do not think for a moment, regardless of whether Jerry Seinfeld receives an autism disorder diagnosis that his condition or disorder resembles my younger son's in any meaningful way. My son like many "on the spectrum" suffers from intellectual disability, seizures, self injurious behavior, obsessive, persistent behaviors, sensory issues and  limited verbal communication. There is no way he could possibly put on a command performance and entertain an audience as Mr Seinfeld does.

Many high functioning autism "self" advocates and parents of high functioning children speak up for Mr Seinfeld's right to speculate about being "on the spectrum".  They don't really have to because to my knowledge no one challenges Mr. Seinfeld's  right to do so but they do anyway, a courtesy seldom extended to those with severe autism who can not speak for themselves and whose parents, family members and other caregivers,  THEIR ONLY REAL SELF ADVOCATES, must speak for them.  

My son was diagnosed at age 2 plus 1 day after several months of testing and observation because we, his parents, sought medical attention for his developmental delays and behavioral issues at an early age before we had even heard of autism.   Mr Seinfeld who has been a very generous supporter of autism causes thinks he "might be" "on the spectrum" at age 60.  The gap between those two realities is huge and says all that needs be said about the "unified" autism spectrum disorder. It also says much about the media which will jump for every adult who "comes out autistic" with an alternative way of thinking they call autism while ignoring the severe challenges facing those with severe autism disorders and their families and caregivers. 

Time for me to "have a coffee".  And thank you for sharing with us all your incredible gift for humor if you happen across this humble blog Mr Seinfeld.

New Jersey Dad: "Reality Of Autism Is Often Very Grim"

I chose the name of my email account "AutismRealityNB@gmail.com" because, from my perspective, the harsh realities of autism disorders are usually ignored or worse,  intentionally misrepresented, by the mainstream media, autism awareness organizations, some high functioning autism "self"advocates and even some parents and autism professionals.  An online friend of mine who shares similar perspectives, Roger Kulp, shared an article on my Facebook timeline yesterday which surprised me because it was a commentary published in the New Jersey Courier-Post which presented a realistic view of some of the harsher realities faced by some with autism disorders and their families.

James Terminiello is the father of a 26 year old autistic son.  His commentary, Reality of autism is often very grim,  describes in detail many of the harsher realities faced by those with autism disorders and their families and other caregivers. Terminiello pulls no punches and will quite possibly incur the wrath of those who wish to paint autism as a pretty picture of alternative thinking and unusual genius:

"In  the world of autism, the autistic who pens short stories, designs bicycles, plays a mean piano or builds his own advocacy website gets the lion's share of media attention. And it has gotten out of hand. As a result, in the public eye, what was once regarded as a future-annihilating, invincible condition has become just a quirky little detour on the merry road to success.

Very nice and very, very untrue."

I  will not re-post  Terminiello's entire commentary here but I strongly encourage anyone who wants a realistic view of autism disorder realities to read it on the Courier-Post. And the next time you read a feel good story about the wonders and accomplishments of the more fortunate with autism remember there are many, many more whose lives, and the lives of their families and caregivers are actually impaired, restricted and shortened by autism disorders.

SUDEP Awareness Day and Autism Disorders

A much higher percentage of people with autism spectrum disorders suffer from epileptic seizures than among persons in the general population.   At the severe end of the autism "spectrum" it has been estimated that as many as 39% also suffer from seizures.   My severely autistic, intellectually challenged son Conor suffers from seizures including tonic clonic known as Gran(d)  Mal seizures and almost lost his life last year to an adverse reaction to his seizure med at that time.  Among persons with epilepsy there are many risks surrounding loss of consciousness and breathing during seizures.  Approximately 1% off persons with epilepsy die as a result of SUDEP, Sudden Unexpected Death in Epilepsy.  In the UK the SUDEP Action organization has started a SUDEP Awareness Day, October 23.  It has received the support of  a UK MP Ed Vaizey.

The Epilepsy Foundation has a page on SUDEP which sets some important information:

What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. No other cause of death is found when an autopsy is done. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. These sudden deaths are rare in children, but are the leading cause of death in young adults with uncontrolled seizures. 

What happens?

The person with epilepsy is often found dead in bed and doesn't appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

Can SUDEP be prevented?

Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures.  Paying attention to managing your seizure medications as best as possible, taking them regularly, and preventing seizures emergencies is all part of this.

October is autism awareness month in Canada.  With the very large percentage of persons with autism disorders who also suffer from epilepsy it would be helpful if autism awareness organizations provided information about epilepsy and SUDEP.

Canada's Autism Awareness Month? Not Much Awareness Going On ... Once Again

October, for what its worth, is Autism Awareness Month in Canada.   You will probably see performances by persons with Asperger's or high functioning Autism.  There will be wonderful success stories and accomplishments shared to give parents hope, in many cases false hope, about their child's future. 

There will be little mention, if any, of the persons who suffer from severe, low functioning Autism Spectrum Disorder.  There will probably be little about such serious issues as sensory challenges, self injurious behaviors, meltdown, wandering resulting in injury and death, seizures and other challenges common to persons with autism disorders.   You probably will not be told that the World Health Organization estimates that approximately 50% of persons with an autism disorder also have an intellectual disability. Nor will you learn that approximately 40% of those on the low functioning, severe end of the autism spectrum will also suffer from epileptic seizures.

2 sides of Conor: his joyful personality and his autism disorder

Above Conor and Mom enjoy a walk at Halls Harbour Nova Scotia

Below Conor engages abruptly in self injurious behavior hitting his head

You will probably see lots of walks and parades and fun events "to support autism" whatever that means. There will be lots of feel good stories but you probably won't even hear that autism is ...... gasp ..... a disorder, a neurological disorder.

Autism awareness in Canada, like the US April version, is little more than a month of feel good cliches and buzz words about the joys of autism and stories.  There will probably be few mentions of harsh realities like the information provided in the 2007 report of the American Academy of Pediatrics,  Management of Children With Autism Spectrum Disorders:

Associated Morbidity and Mortality

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs,^89–91 and available data suggest that mortality is increased as well (standardized mortality ratio: 2.4–2.6).^92,93 The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy. Cases of suicide in higher-functioning individuals have been reported.⁶

^{Others may do and say as they wish about autism and pretend their child's autism is a  blessing. I find great joy in my son every day and love him dearly.  I love him too much to pretend that he does not suffer from his severe autism disorder, intellectual challenges and seizures.  I love him too much to hide his harsh realities under a blanket of feel good autism "awareness" cliches.} 

Canada's Autism Awareness Month Message: Autistic Children Become Autistic Adults

Autism Awareness Month:

Autistic Children Become Autistic Adults

October is Autism Awareness Month in Canada.  As a father of an 18 year old son with severe autism disorder, profound developmental delays (like 50% of the autism spectrum according to the World Health Organization) and seizures which also affect many with autism I can tell you from personal experience that autistic children become autistic adults. Enjoy your child's early years and student years but do not forget that they will grow up and many will need enhanced adult autism residential care and treatment.

With other parents of autistic children I began advocating 15 years ago for evidence based early autism intervention.  Like those other parents my son did not receive the early intervention services which many autistic children in NB now enjoy.  We knew it would not be put in place in time to help our kids,  but it was the right thing to do, to advocate first for early autism intervention. We also advocated for autism trained TA's, education assistants, whatever the term du jour is now,  and my son and others did, and still do, benefit from our advocacy as do many other autistic students in NB today.  We may have been the early "wave" of parent advocates but we are still part of the picture today particularly in advocating for adult autism care and we ask you to join us but do not make the mistake of thinking we will "step aside".  Parent autism advocacy is not a "wave" it is a life long necessity; a life long commitment ... for all of us.

Absolutely no progress has been made on adult autism services and I ask parents whose children enjoy the benefits of early autism intervention and student autism services to think ahead and help advocate for the adult autism services our children need and many of your children will also need.  Some have already started advocating for improvements in early intervention and improved autism education services.  A group has also started a petition and joined the fight for an enhanced autism group home system around the province, as described in 2010 by Professor Emeritus (Psychology) Paul McDonnell,  with a residential care centre for the most severely autistic, a centre which would also include professional expertise to assist the regional group homes.

The online petition is a good idea and I urge everyone to sign the petition.  I also ask you to consider sending a personal email, fax or letter to your MLA.  I believe, based on my 15 years of autism advocacy, with the ASNB, personally, and as a legal advocate for some autistic students, resident of a group home and an individual who resided in the Psychiatric Hospital in Campbellton for 4 and 1/2 years, that the personal mail/email communications will carry additional weight. 

Whatever you do enjoy your autistic child as he or she grows and develops, as you would any child, but please do  not forget that many of your children will face complex challenges throughout their lives and will need you as their advocates for as long as you can be of assistance.  We can be of assistance to each other if we work together selflessly and for the benefit of our autistic children, adults and family members.

Respectfully,

Harold L Doherty
AutismRealityNB@gmail.com

Severe Autism Reality: Conor is Back from Dental Surgery AND Post Surgery Medications

After last Friday's dental surgery, followed by nearly a week of 4x a day anti-biotics, and the occasional pain killer to deal with swelling and pain, (in addition to his regular seizure meds)  it was great to get out for a Superstore trail walk with Conor on an amazingly perfect fall day in Fredericton yesterday. 

Conor set the pace as always but had time to be nice to Mom.

Severe Autism Reality: Wisdom Teeth Extraction At the Hospital

Conor and Mom had some fun with a couple of selfie shots above while waiting for further processing at the Oromocto Hospital today.  In the car picture below Conor multi tasks giving Mom "five" while having fun on the Kindle and waiting for Dad to get the show on the road. It was not as easy as it looks though. We prepared Conor for the experience as best we could in advance letting him know a week in advance and talking about it in detail, including putting a list of stages for the day up on the kitchen wall. As usual the day ends with some Jeopardy fun with Alex Trebek. 

Teeth extraction is one of the ways severe autism disputes the irrational notion that autism is "just a different way of thinking" not a disorder.  Extractions for most involve a visit to the dentist office.  For many with severe autism it requires full sedation in a hospital.  Freezing the gums, sticking a needle in Conor's mouth, pulling out teeth, cutting and stitching up gums while Conor is conscious is impossible and would result in serious injury to Conor with considerable risk to the dentist. 

These pictures show of the preparation and interaction we did with Conor who is now stretched out comfortably on the couch watching CBC New Brunswick News with Harry Forrestal (in the morning its Terry Seguin).  Return to routine is, as always, the base for return to normal for Conor.  

2 thumbs up for our buddy Conor who did a great job remaining calm and cooperating with hospital staff today!