New Brunswick Must Start NOW to Tackle Early Death in Autism!

My son Conor is now 21. He is a great joy in my life. Like many with autism and intellectual disabilities he also suffers from epilepsy which made itself known in adolescence. He is one of a significant number of persons on the Autism Spectrum whose life expectancy is reduced on average by 30 years. In NB we are afraid to discuss such harsh realities. 

New Brunswick Must  Start NOW to Tackle Early Death in Autism!

Here in New Brunswick government, media and the general population are largely unaware of the early death crisis marked by sharply reduced life spans of persons with autism disorders. Persons with autism spectrum disorders die early, shockingly early.  Persons with autism and intelligence in the average range die as much as 9 years earlier than persons in the general population.   Roughly half of the Autism population who also have Intellectual Disabilities die on average 30 years earlier than persons in the general population. These brutal realities have been confirmed by a Swedish study reported for public awareness by the UK Autism Reserch Charity Autistica. The Autistica Report Personal Tragedies, Public Crisis: The urgent need for a nationalresponse to early death in autism can be found on its web site. We Must Start Now to Tackle Eearly Death in Autism is a comment on that report published on the Huffington Post by the UK research director Dr. James Cusack himself a persons with autism.

Here in NB government responded well to autism parents advocating for evidence based early intervention and other services to age 16. Tragically NB governments have shown no real interest in addressing the serious needs of autistic adults whether those with average intelligence suffering from suicide inducing depression or the roughly 50% who have intellectual disabilities many of whom suffer from life shortening epilepsy a condition worsened by the cognitive and communication deficits of those with autism and intellectual disability.

NB government, media, and even autism community groups throw around clichés and on a positive note engage autistic children and young people in social activities to some extent but they do not even talk about the brutal realities of early death facing so many with autism spectrum disorders. New Brunswick has seen autistic adults die early deaths from epilepsy seizures. Some with autism suffer from serious depression.  No one is talking about these harsh realities in the context of autism disorders where the rates of early deaths are so high compared to persons in the general population.

Dr. James Cusack, as stated, is himself a person with autism and he is the Research Director of Autistica.  In hiis recently  published blog post on the Huffington Post called “We Must Tackle Early Death in Autism  " he stated:

“When I was 12, I was told I was autistic. No-one told me that could mean I was more than twice as likely to die early.

The reality is that autistic people are dying far too young. A large study from Sweden has found that, on average, autistic people die 16 years younger than the general population. Autistic people are at increased risk of death from almost every possible cause.

For those with autism and intellectual disability, who form the majority of people with autism, the average age of death is a staggering 30 years lower than the general population. The leading cause of death is epilepsy, which is harder to identify in autism than the general population, and which has an unusual developmental trajectory - not generally developing until adolescence. Meanwhile, autistic adults with intelligence in the normal range are almost ten times more likely to kill themselves. To me, this demonstrates the challenges which many autistic adults face in their daily life and our failure as a society to meet the needs of the autistic population.

These statistics are sobering, but behind them lie real people, real families, and real losses to wider society. I meet far too many parents who have had told me about losing their sons or daughters. I know far too many autistic people who have struggled with mental health problems and experienced thoughts of suicide.

It is not enough to shake our heads and comment on how shocking these results are. As a humane society and nation, we must act on this. I work for Autistica, a charity which funds research into autism. We have just launched a report "Personal tragedies, public crisis". In this report, we have committed ourselves to doing our part - we are going to commit to raising £10m to solve this issue. In particular, we hope to fund research which addresses epilepsy, suicide and poorer physical health seen in autism.

I am driven by the desire to ensure that every autistic person has the same opportunity to live a long, happy life like the rest of the population, but I am also not deluded. Autistica cannot and will not be able to do this on our own. We need society's support and action from government to fund research which can find ways to tackle the leading causes of death in autism. This issue is also bigger than research. Our health services, social care and other must reform to build a world which not only acknowledges autism, but which is truly autism-friendly, allowing everyone with autism to participate.

Early death in autism must be tackled now. Please join us and give everybody with autism the chance of a long, happy, healthy life.”

No Shediac, No Adult Autism Summit, More Happy Conor Time

Conor and Dad - Buddies 4 Ever

No Shediac, No Adult Autism Summit, More Happy Conor Time.

I was planning for some time to attend the Adult Autism Summit held in Shediac Friday Evening and yesterday. I had even promoted the Summit on FB to encourage people to attend. When I saw the speakers list and topics I was not as sure about attending. There appeared to be an exclusion of topics and speakers addressing the challenges and needs of the 44% (US CDC) to 50%(WHO) of persons with autism who suffer from intellectual disability. Individuals with ASD and ID also suffer high rates of epilepsy often becoming visible with the onset of adolescence.

As stated on the UK Autistica report, Personal Tragedy, Public Crisis, based on a large quality Swedish study, persons with Autism and Intellectual Disability (referred to as Learning Disbility in the UK report) tend to die 30+ YEARS earlier than persons in the general population primarily because of their high epilepsy rates. With a now 21 year old son with severe autism, intellectual disability and epilepsy this is a subject of extreme importance for me. I knew I could not attend Friday night because I was counsel in a labour arbitration in Saint John during the day and would not be able to make it Friday Night.

I had still planned to attend Saturday but with the apparent exclusion of issues affecting those with ASD, ID and Epilepsy a large component of the ASD spectrum I started reconsidering whether to attend. I was also not impressed by the exclusion of NB parent autism advocates who fought successfully for the early intervention program which has received international recognition, the training of 500-700 teacher aides in those education districts where aides were encouraged to enrol in the UNB-CEL autism program and the reversal of the decision to close the Stan Cassidy Autism Team that provides consultation services up to age 16.

Notwithstanding my concerns about the agenda and speakers' list I was still thinking about travelling to Shediac yesterday for the summit and I discussed it with Conor's Mom Friday night. Conor was present when we discussed whether I would go to Shediac According to his Mom Conor had been a bit agitated when Dad was later than usual arriving home as a result of my work Friday in SJ but was happy when I got home. When he heard me talking about going to Shediac Conor said "No Shediac" and my decision was made for me. Conor clearly wanted me home for more Conor - Dad time yesterday. He was very happy when I said "No Shediac". I was also glad Conor made the decision for me.

New Brunswick Lacks Real Autism Awareness - UK Charity Autistica Is A Model of Real Autism Awareness

 New Brunswick Lacks Real Autism Awareness

In making that statement I mean that there is no real autism awareness created by statements that do  not include the fact that between 44% (US CDC) and 50% (WHO) of persons with an autism spectrum disorder also have an intellectual disability.  In fact it will be very rare for any community or "autism" organization to refer to autism as either a spectrum which includes persons with ID or even that autism is a disorder.  There is no mention of self injurious behaviors or of the seizures from the epilepsy that often accompanies those with autism and intellectual disability. There is no mention of the fact that autistic adults with severe autism related challenges often live with their parents until their parents can no longer provide adequate care or until their parents pass away. 

One of the most disturbing autism facts ignored by media and public community organisations in Fredericton and across New Brunswick as a whole is the fact that adults with autism tend to have very short life spans compared to the general population passing 16 - 30 years sooner than otherwise.  The UK autism charity Autistica to its credit does more than simply promote blue lights and super hero costume walks.  The Autistica report is based on a large, high quality Swedish study reported in the British Medical Journal and subsequently commented on publicly by Autistica:

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

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 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.

Suicide in autism 

After heart disease, suicide is now the leading cause of early death in adults with autism and no learning disability. Indeed, the recent Swedish study found that adults with autism and no additional learning disability are over 9 times more likely (relative to a general population) to commit suicide.3

The recent report from the Mental Health Taskforce identified autistic people as at higher risk of mental health problems.15 Indeed, research indicates that 70% of autistic individuals have one mental health disorder such as anxiety or depression, and 40% have at least two mental health problems.4 When these issues appear alongside autism, mental health difficulties can go undiagnosed and untreated. 

NB lacks autism awareness but it does not have to be this way. The UK Autistica is an example of an autism charity that does speak honestly about autism.  Speaking publicly about the harsh realities facing many, particularly adults, with autism is not being negative.  I have always tried to be honest and forthright in describing these harsh realities. That approach has not stopped me or Conor's mother and brother from ensuring his happiness while in our care.  The pictures that follow are proof of the joy he experiences and adds to those who love and care for him:

Still No NB Adult Autism Residential Care and Treatment 12 Years Later

October, which is officially Canada's autism awareness month, has passed with no real autism awareness being generated.  The public is no more informed than ever about the harsh realities endured by many with autism disorders.  For many autism is a tv series about a very intelligent person with high functioning autism/Aspergers.  Many are unaware of the intellectual disability, seizures and self injurious behaviours that restrict the lives of so many with autism disorders.  Many, in fact most, are unaware of the large Swedish study reported on by the UK Autistica charity which brought to public attention that persons with autism tend to die 16-30 years earlier than persons in the general population with depression and suicide being the primary cause at the higher functioning end of the autism spectrum and epileptic seizures at the lower functioning end of the spectrum.  Although the autism health care crisis is known to government no steps have been taken to move forward to address this crisis.

NB has developed international recognition for the early autism progress it developed and has most recently through the Fredericton based UNB-CEL Autism program entered into a contract with France to provide services.  Respected NB autism expert Paul McDonnell Ph.D. proposed an autism network 7 years ago in an interview with the CBC.  Two years ago Dr. McDonnell, autism advocate Cynthia Bartlett and I met with then Social Development Minister Cathy Rogers and presented an expanded paper setting out in more detail the principles articulated by Dr. McDonnell in his 2010 CBC interview. :

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)

Despite the autism expertise developed in Fredericton at the UNB-CEL and at the Stan Cassidy autism team the PNB has not acted to expand the services available in early years to provide proper adult autism treatment and residential care for autistic adults in a centre for those with the most severe needs and in autism specific group homes in communities around the province. 

Instead NB STILL sends autistic adults in need of serious treatment and residential care to NB's northern border, far from most families, to the Restigouche Psychiatric Hospital, in the riding of soon to be former MLA/Lobbyiest  Donald Arsneneault.

The NB adult autism health care crisis has been very well known to NB governments for at least 12 years. The autism expertise has continued to develop, not in the Restigouche Psychiatric Hospital but in Fredericton where that expertise could be expanded to develop the center for the autism group home network envisioned and proposed by Paul McDonnell Ph.D. in 2010 and 2015.  Instead our adult autism family members have been treated as political chips and sent off far from families to Campbellton. The fully bilingual autism expertise developed in Fredericton is ignored for political purposes.  In the meantime NB's autistic adult care and treatment remains as it was in 2005:

" Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province. "

....

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007

Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher's aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government's lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B."