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!

Dear Premier Elect Gallant: Please Develop the Adult Autism Care System NB Has Needed for So Long

September 25, 2014

Premier  Elect Brian Gallant
Province of New Brunswick

Dear Mr. Gallant:

 "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." 2010, Professor Emeritus (Psychology), Clinical Psychologist,  Paul McDonnell.

The people of New Brunswick, including those with autism disorders and their families, have entrusted you with the great responsibility of being our premier. According to recent figures of the US CDC approximately 1 in 68 persons are estimated to have an autism spectrum disorder, a spectrum that encompasses many with varied, complex, challenging needs.  In the absence of Canadian data that estimate applied to New Brunswick's population of approximately 750,000 (Canadian Census, 2011) means that approximately 11,000 New Brunswickers have an autism disorder.   

At present there is no autism specific residential care system in place for New Brunswick youth and adults.  There is no autism specific treatment system in place for those with tertiary level  care needs  who are older than the Stan Cassidy autism tream age cutoff of 15.   Instead we have exiled severely autistic adults to the Restigouche Psychiatric Hospital in Campbellton, to general hospital wards, to facilities outside the province of New Brunswick and on temporary bases at least to the gounds of a youth penitentiary and to hotel rooms under supervision.  Higher functioning autistic youth and adults currently reside in group homes and a variety of apartment, supervised living arrangements.

In an email sent to you and the other party leaders June 14, 2014 I outlined these needs as I have done many, many times to the governments and leaders of the day since 2003.  Apart from Dominic Cardy and the NDP and David Coon and the Green Party few have ever responded in any meaningful sense beyond acknowledging receipt of my correspondence whether sent on behalf of my severely autistic now 18 year old son,  as a former president of the Autism Society New Brunswick or as a persistent advocate for autism services in New Brunswick over the last 15 years.

The fact that we  have to resort to such a wide variety of inadequate and inappropriate living arrangements for those adults with severe autism disorders is compelling evidence of the need for a  system of autism group homes, for those with the necessary functioning capabilities  built around an adult autism residential care and treatment centre for those over the age of 15 with more severe autism challenges.  This system was described in a 2010 CBC interview with NB autism expert Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnel from which the quote above was excerpted:

Paul McDonnell, September 2010

"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 behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.

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 dynamic 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."  (Bold highlighting added - HLD)

If a major autism centre is not developed to help enhance the group homes and provide permanent residential care and treatment for those with severe autism as Professor McDonnell has advised people with severe autism, including my wonderful, happy 18 year old son,  will continue to be sent to live  out their lives in Campbellton at the Regional Psychiatric Hospital. Apart from the  hospital character of that facility it is also located in a corner of the province 3 to 4 hours drive from most communities in New Brunswick and has no direct access to autism expertise.   The ASNB had previously polled our members on the desirable location for an autism centre and voted for Fredericton for several reasons, the two most critical being proximity to the autism expertise developed at UNB and the Stan Cassidy Centre, and the central location providing easier access for most families to their loved ones who would reside there temporarily and in some cases permanently.

For many, including my 18 year old son, whose father also grows older, time is running out. Please ask your ministers of social development and health,  to begin working on the development of the adult care system described by Professor McDonnell. New Brunswick has already developed, in response to parent advocacy, guided by informed professional expertise, particularly Professor McDonnell, and with the commitments made by Premier Lord and Premier Graham, developed an early autism intervention system which has achieved recognition by informed sources in the US and Canada.  

New Brunswickers have already proven we can do more than cut down trees, dig up rocks and siphon gas .... we can develop the intellectual and professional resources in a beautiful natural environment to develop new concepts for living for those in need. We didn't wait for neighboring provinces to show us what to do, we forged ahead with a made in New Brunswick system of early autism intervention and school autism education which, while it still needs  more work and improvement, is far ahead of many provinces in Canada and states in the US.  

We can do the same for adult autism care and I ask you, this time, as Premier Elect for the Province of New Brunswick, to begin work on the cost effective, humane system that will allow this father to know my son and others with moderate to severe autism disorders will be able to live their lives  in a secure, nourishing environment. 

Respectfully,

Harold L Doherty

Fredericton

I Am Hoping for NDP Voices in the NB Legislature to Help Families Advocate for An Adult Autism Care Facility

The picture above is from Conor's 2nd Birthday on February 2,  1998.  The next day we received his autism disorder diagnosis, described initially as Pervasive Developmental Disorder Not Otherwise Specified,  six months after various tests and six months after requesting medical attention because we did not understand his lack of development and we were concerned.  Shortly thereafter as his deficits became more obvious and pronounced the diagnois was changed to Autistic Disorder now part of the DSM-5 Autism Spectrum Disorder. An age 2 diagnosis was rare in those days.

Conor at 3.  Over the first year, post autism diagnosis, we had attended at the  very limited information sessions provided to families with autistic children by the Province of New Brunswick. We had also heard much rhetoric about just accepting your child as he is, accepting his autism, be happy.  Then I attended a parents group meeting (in the pre government funded Autism Community centre days)  At the meeting I found myself surprised to be lectured directly and sternly, by Dawn Bowie,  the mother of an autistic child who also happened to be a registered nurse). From those meetings and connections with other concerned parents in Moncton, Miramichi, Oromocto, Fredericton, and a Saint John family (Heather and Don Chamberlain) began a parent advocacy movement that resulted in an April 1, 2003 announcement of funding for unspecified autism services by then Health Minister Elvy Robichaud. By the end of the Lord government's term the UNB-CEL autism program had been established with early intervention centres. Autism training began for teacher aides and resource teachers and under the Graham government more were trained.  An ill considered decision to close the Stan Cassidy tertiary care team who worked with autistic children under the age of 16 was reversed ... again as a result of advocacy led by parents. 

Conor, still our happy boy, is now 18 and will require decent adult autism care 

 for the rest of his life once his parents grow old and pass  on. 

I am asking in this post for all families with autistic children and adults to consider voting tomorrow for the NDP.  I make this request in order to encourage you to vote for MLA's in the legislature who are committed to advocating for a badly needed adult autism care facility.  Beginning in 1999 parents advocated with some success for early autism intervention and autism trained teacher aides and resource teachers.  Progress in adult autism care has been virtually non existent with autistic adults shipped out of province in some cases, to the Regional Psychiatric Hospital in Campbellton and some have resided for periods of time at least on general hospital wards.  

The fight for adult autism care in NB will not become any easier with the election of one of the 2 parties, Red or Blue, that have governed NB during my entire life and during the last 15 years of autism advocacy.  But at least if some NDP voices are elected, unlike the Blues and Reds,  we will have voices from a party that has publicly committed in its election platform to an adult autism facility.   

If you are voting tomorrow, I respectfully ask you to  please consider voting NDP. 

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.