Would My Son With Severe Autism Disorder Be Happier If I Had Listened to Robison, Ne'eman, Silberman & Other Strangers?

The picture above was taken a few days ago.  I believe anyone can look at the picture and see the happiness on my 19 year old severely autistic son Conor's face.   What is truly remarkable is that his happiness has been a constant feature of his life despite the very severe challenges that he faces with severe autism, intellectual disability (like 50% of persons with autism), epileptic seizures, life threatening adverse reactions to some seizure meds and self injurious behaviors.  What is perhaps even more remarkable is that Conor's happiness has been a constant in his life even without his parents listening to or giving any weight whatsoever to the opinions of self annointed autism experts like John Elder Robison, Ari Ne'eman, Shannon Des Roches Rosa, Jim Sinclair, Michelle Dawson, Steve Silberman or any of the other persons who attack parents for speaking honestly about their child's severe autism disorders and who actually support efforts to find cures and treatment for their autism disorders. 

The following are pictures of my happy son Conor thoughout his life although not in chronological order. We didn't follow or need the advice of the army of neurodiversity activists who are actually arrogant enough to believe that they know better than parents how to raise, care for and love their own children.  I have never hidden my disdain for their attempts to impose their so called self advocacy on other people's children. When I see my son who struggles with far more severe challenges than the self advocates who want to rule the autism world and yet is still happy and loved by those who know him I am very glad that I do not subscribe to their ideology. 

Sebastien's Sad and Scary Adult Autism Reality in Moncton, New Brunswick

When autistic persons in New Brunswick turn 21 particularly severely autistic adults services many services will no longer be available. For severely autistic adults adulthood can be bleak, sad and scary. This is Sebastien's story, a severely autistic 21 year old from Moncton, New Brunswick ... as told by his obviously heartbroken and scared mother Lise.

Why Do New Brunswick Governments Ignore Needs of Severely Autistic Adults? When Will They Ever Learn?

The Restigouche Psychiatric Hospital on NB's Northern Border Far From Most NB Families is a 

Massive Institution and the Present and Future Home for Severely Autistic Adults in 

the Inclusive Community of New Brunswick. 

My Son Conor Is A Great Joy But His Severe 
Autism Presents Many Challenges, As Things Stand 
He MAY Spend His Adult Life AD (After Dad) 
in the Restigouche Psychiatric Hospital

Autism spectrum disorders and the challenges they present to those who suffer from them continue on into adulthood in many cases, particularly for those who did not receive the benefit of early intervention.   So why should New Brunswick's only tertiary level health care service, that offered by the Stan Cassidy autism team in Fredericton, be arbitrarily cut off at age 16. Why has New Brunswick not developed an adult autism treatment and permanent residential care facility for the most severely autistic who will either be sent to Spurwink Maine or as is more likely as the screws tighten to the Regional Psychiatric Hospital in Campbellton far from the bulk of the population in Canada's most community and inclusion obsessed province?

"Stan Cassidy Centre Autism Team

Who we help

We have a provincial mandate and therefore serve the entire province of New Brunswick. Service to our clients is provided in their language of choice (French or English). We see school-aged children until their 16th birthday."

It is a matter of record that the NB government was once working on an adult autism residential care and treatment facility as an alternative to the very expensive costs of sending adults to the Spurwink facility in Maine at $300,000 per year per person or sendign them to lives spent far from family in a psychiatric hospital with no autism expertise in Campbellton. In an article by Mary Moszynski published on page A4 of the Times & Transript on July 21, 2006 it was reported that:

"The province doesn't have a facility specifically for New Brunswickers who suffer from autism and can no longer remain at home. However the Department of Family and Community Services has been examining the costs of building such a facility. Last year Tony Huntjens, former family and community services minister, said publicly he was working on a proposal to open a residence where those with autism could receive specialized care."

The adult autism facility that Minister Huntjens was planning never materialized. The Minister himself stepped down not long thereafter  though.   The concept of a facility specific to autism has been under attack ever since then by various individuals and groups claiming to have a community focus who conveniently ignore the severely autistic adults who have been banished from their communities because the communities lacked the ability to care for and treat those with severe autism disorders. 

Although successive  Cabinet Ministers and NB governments have continued to keep severely autistic adults in exile in inappropriate settings former Minister Huntjens has remained true to his principles by sharing his experience with concerned parents of severely autistic adults including his comment to me in relation to my commentary on the need for an autism specific facility to provide residential care and treatment for severely autistic NB adults:

"I totally agree with you Harold. When I was minister of FCS we had to use facilities in the State of Maine at an annual cost of $300,000 per person. I had planned on pursuing the initiative you speak of using the State of Maine model...this would keep the autistic person closer to home in familiar surroundings, it would create employment so that the $600,000 now spent in Maine could be used to pay for these services at home. As you know, my efforts were derailed and I had to resign as minister. These financial facts I speak of need to be brought to the attention of the present government...perhaps they will see the light.

Keep up the fight and I personally wish you the very best of luck.

Tony Huntjens, January 2012

" totally agree...It is long overdue...could save the province a lot of money, employ NBers, and have the people close at home and family. When will they ever learn?"

Antoon Jozef Huntjens, August 24, 2014

Mr Huntjens comments on August 24, 2014 were similar to those of former NB civil servant Wendy McLeod MacKnight:

"Harold - it is an embarrassment to me that you and I started discussing this back in 2003 after the preschool program started and no one has yet addressed it. We came close about 5 or 6 years ago, but got shut down. it is more than overdue..."

Wendy McLeod MacKnight, August 24, 2014

Unfortunately for my severely autistic, now 19 year old son, I still can not answer the question posed by Tony Huntjens.  My biggest fear, which I have tried not to surrender to,  is that NB governments, political and bureaucratic. might simply be too stubborn, uncaring and hypocritical to admit the realities of severely autistic adults as long as they are kept out of sight in the Restigouche Regional Psychiatric Hospital or out of the province. 

As I age though, as my son ages, as time runs out the question that continues to haunt me  is "when will they ever learn?" 

My greatest fear is that they never will. 

Gallant Government Shows No Signs of Addressing Serious Adult Autism Care Issues

The Brian Gallant Liberal government is continuing the trend of pretending that the needs and well being of NB autistic adults, particularly those with severe autism  disorders, are being addressed when in fact hey are not.  Severely autistic adults have been sent to Spurwink, Maine in the past and to the Restigouche Psychiatric  Hospital in Campbellton. It's response to the proposal for an adult autism care network which has been discussed during the last decade in NB and recdently presented in a concise format the Gallant government has chosen to unleash its communications officers to brag about all that has been done while ignoring the most serious issues facing NB autistic adults: the need for adult autism treatment and permanent residential care facility for those most severely affected by autism and for autism group homes around the province with autism trained staff and expert autism professional oversight.

Psychiatric Hospital

Restigouche Hospital

10 Gallant Street

Campbellton, NB

The Restigouche Psychiatric Hospital is located at 10 Gallant Street in Campbellton NB on our NB's norther border with Quebec.  As things stand now NB adults with severe autism disorders including my now 19 year old son when I am deceased or too old and infirm will live out their lives far from the vast majority of the NB population in the south and far from the autism expertise that has been developed at the UNB-CEL, UNB Psychology and Stan Cassidy Centres in Fredericton.

My Son Conor is now 19 and, so far,  has had a happy life  notwithstanding his severe autism disorder and related conditions including seizures, life threatening reactions to his meds,  and  serious self-injurious behavior. My experience raising my son, previous Autism Society representations and public statements of NB Autism Expert Paul McDonnel are ignored by the NB Government which has responded to a very serious well drafted adult autism care proposal by tasking its communication officers to pretend that everything is just hunky dory and all will be well as long as we all keep saying "community" and "inclusion" over and over".  

Community cliches will not address the needs of severely autistic adults like my son. I know from 19 years of parenting and 17 years of autism advocacy in NB that ignoring the facts will not help my son  and other NB autistic adults.

Severe Autism With Intellectual Disability And Epilepsy Can Be Tough But It's Still a Wonderful World

My Son Conor Wore The Blue on World Autism Awareness Day

I understand some of the criticisms of the day and of thinking that

wearing a color in itself creates autism awareness but as long as people 

raise real autism awareness of the challenges of autism disorders and  the related 

conditions from which so many suffer including self injurious behavior, intellectual disability, epilepsy 

and depression;  that's all I look for and it is what I try to do  365 days a year.

Caring for, advocating for, fighting for my son with severe autism disorder, intellectual disability, tonic clonic seizures and life threatening adverse reactions to an ever changing seizure meds scheme will not bring me down. My son is worth every minute of my time and effort and at the end of each day I believe its a wonderful world and will do my best tomorrow to help my Conor enjoy it as much as I do.

Self Injurious Behavior, Seizures, Reduced Life Expectancy Are My Son's Severe Autism Disorder Challenges Not Concern Over The Expression #MSSNG

Self Injurious Behavior, a  common occurrence  in some with severe autism, can appear in  a flash and transform a happy, fun filled moment into pain and suffering as it does above with my son Conor.  The very high functioning autistics who do not share my son's disorder and challenges have no right to dictate what autism research will or will  not be conducted,  research that may someday help my son and others with severe autism disorders. 

The world has recently seen the very talented, successful  Jerry Seinfeld "identify"  with autism before retracting his statements. More recently John Elder Robinson and other high functioning autistics got very upset over the use of the expression #MSSNG coined for the Autism Speaks research campaign and demanded that autistics must  dictate the course of autism research.  My son Conor with his severe autism disorder, intellectual disability and epilepsy has no understanding of this high functioning autism outrage.  His problems are more in the nature of the serious self injury engaged in often as set out in the pictures above. 

Today, with the holidays disrupting his routines, Conor engaged in one of his most serious meltdowns in some time hurting himself and the walls and when Dad intervened I felt some of it too. I honestly can't relate to the concern that #MSSNG is somehow an insult and travesty to those with autism disorders not when I am trying to restrain my powerful, 210 lb  6'1" son without hurting him and at the same time protect myself in the middle of a serious meltdown. 

Statements below from the AAP.

American Academy of Pediatrics 

Management of Children with Autism Spectrum Disorders,  (2007)

Statement of reaffirmation  126 (6): e1622. (2010)

Statement of reaffirmation 134 (5): e1520. (2014)

Comorbid severe global developmental delay/mental retardation and motor deficits 

are associated with a high prevalence of seizures (42%)

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs, and available data suggest that mortality is increased as well. 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.

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.

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.

Today I Voted For My Autistic Son's Future; Today I Voted NDP

Conor 18 1/2 with severe autism disorder, profound developmental delay, 

seizures, sensory issues and self aggressive behavior.  Few, if any group home 

staff would be able or inclined to provide the care he needs, A residential care and

treatment facility for Conor and other severely autistic adults with complex needs

has long been needed in New Brunswick.  In this election only the NDP have

committed to providing an autistic center to provide the care needed by 

severely autistic adults in NB; today I voted NDP.

We have long needed an autism center to provide long term residential care and treatment to severely autistic adults. A center could also provide expertise for guidance and supervision of a system of adult autism group homes with trained staff.  I have written on this blog many times over the years of the severely autistic adults who have been sent to a variety of locations the Restigouche (Campbellton) Psychiatric Hospital, hospital wards and foreign and out of province facilities like Spurwink in Maine.  It is not about money, considerable sums have been spent sending severely autistic adults far from family.   Out of sight, out of mind has ruled provincial decision making on the care of severely autistic adults. 

The road ahead will not be any easier than the road behind but change has to begin with a first step and the NDP have provided that first step in the NDP Election 2014 platform:

 "PREVENTATIVE CARE:

We will establish a provincial centre for the care of adults with autism."

The experts say that the Liberal Party has more voter support than the second place Conservatives with the NDP a distant third.  I voted NDP anyway.  My vote was not an attempt to be on the winning side or to elect a particular party to form the government.   I voted for the New NDP today on the basis of its commitment to establish a provincial centre for the care of adults with autism.  The  New NDP is the ONLY party to make that commitment and I voted for that commitment.  

I recognize that the experts are probably right, that the Liberals ... or if the winds shift ... the PCs ... will probably ... once again form the government.  I would like to see Dominic Cardy, Kelly Lamrock, Brian Duplessis, Charles Doucet and some other NDP MLA candidates elected.

New Brunswick's New NDP does, in my opinion, have a strong team, starting with its leader Dominic Cardy who has been very impressive in the debates  but I voted for the New NDP because it is the party which is starting the serious discussion that is needed to provide a future for my son.  I am happy they did.  

I voted for my severely autistic son's future today.  I voted for Conor.  I voted NDP.