Conor Suffers Another Seizure 6:05 a.m. September 2, 2017

Conor's latest tonic clonic (grand mal) seizure  took place at 6:05 a.m. this morning just after I placed his breakfast in front of him. .  I was expecting a grand mal seizure soon as it had been roughly 3 1/2 months since his last seizure in mid May and they have tended to happen 3 to 4 months apart.  This seizure happened while Conor was sitting on the couch, watching a movie and starting to eat his breakfast.  He started shaking violently and slid down off the couch.  I held him to keep his head from striking the floor and slid some soft blankets under his head.  He lay on his side and some of the food he had started to eat came out of his mouth.  Eventually the violent shaking subsided and he was able to speak and, with some help, move.  We went to the market for 2 of Dan's sausages and everything seems pretty noramal. 

Anyone with a  child with autism, especially if their child is developmentally delayed,  (persons with autism AND intellectual disability are much mo,re likely to suffer from epilepsy/seizures) would be wise to consult their medical advisers.  Epileptic seizures are very common among persons with autism and they can have serious, dangerous, even deadly consequences.  The UK Autistica report, Personal tragedies, public crisis, based on a large high quality Swedish study found that persons with autism tend to die between 16 to 30 years prematurely with the high numbers found among those with autism, intellectual disability and autism.  It is also worthwhile to note that the Autistic report indicates that in cases of people with autism seizures do not appear until their teenage years unlike in the general population when it is likely to show up in the child's first years.  In Conor's case his seizures appeared in his teenage years.

Each grand mal seizure is a reminder of my son's scary future prospects. With autism, intellectual disability and epilepsy he is at serious risk of decades early premature mortality.  For now though he is with us and I am relieved and happy that it happened again while I was just feet away.

Premature Mortality In Autism and Intellectual Disability - Epilepsy

Personal tragedies, public crisis

"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.1 0 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"

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Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time.

Think Twice Before Leaving An Autistic, Epileptic, Intellectually Challenged Person Unsupervised While Bathing

Left: Connor Sparrowhawk an autistic, epileptic 18 year old with learning difficulties 

who drowned while suffering a seizure during an unsupervised bath in a UK care facility. 

Right: Connor Sparrowhawk's mother Sara Ryan who testified it never crossed 

her mind that her son would be left to bathe unsupervised

Combined photo from photos on Oxford Mail

A UK mother has testified during a tribunal review of a Doctor's responsibility,  and the role his performance might have played in the death of 18 year old Connor Sparrowhawk an 18 year old autistic, epileptic youth who drowned when he suffered a seizure while taking a bath unsupervised in a UK NHS care facility.  The linked article from Oxford Mail states that Connor Sparrowhawk also suffered from a learning disability.

The doctor involved has admitted 30 professional failures including obtaining his history of symptoms, failure to keep medical records etc. which apparently resulted in Connor's  unsupervised bathing.

Connor Sparrowhawk's mother, Sara Ryan,  is reported to have fought back tears as she testified:

"We just assumed he was being supervised in the bath. It was not something that came to my mind. It was almost one-to-one support on the unit.

"It had a whole team of specialist staff and there were five patients. It just never crossed my mind."

Our son suffers from severe Autism Disorder, profound Intellectual Disability and epileptic seizures including tonic clonic or grand mal seizures.  He has never been left to bathe on his own even prior to his first observed tonic clonic, epileptic seizure.  

When our Conor, now 21,  goes to the bath one of us is with him.   We do not want to lose him.

Adult Autism Care: It Is Time for NBers to Stop Hiding from Reality and Develop An Appropriate Autism Centre and Network - Part I

"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." 

-NB Autism Expert Paul McDonnell, September, 2010 CBC Interview, (highlighting added for emphasis - HLD)

There is often a split between  higher functioning persons with autism and persons who require life long care, persons who can not advocate on their own behalf.   and persons who require life long care, persons who can not advocate on their own behalf.  I am the parent of a 21 year old with autism, "profound developmental delay"/intellectual disability. As a young child he was interviewed by someone from one of the community based organizations in NB but they decided they would not work with him ... as was their legal right. The reality though is that some with more severe characteristics require intense, expert care not available generally.  My son is one of those. ... As I age and eventually die he will require a very intense and expert level of care not easily found in the community. 

NB Needs an autism care and treatment network that would accommodate persons with autism in need of different levels of care with homes around the province near families and a centre in Fredericton, near our developing autism expertise, for those with the most severe care requirements. Well meaning people in NB have resisted exactly this type of network while looking the other way when adults with autism are sent out of the province to Spurwink Maine or to our Northern Bordhe split generally on adult care issues exists between higher functioning persons with autism and severely autistic adults who are in Campbellton at the Restigouche Psychiatric Hospital as far as possible from by far the greatest number of NB families.   The Community groups and persons who oppose an autism centre and network modeled on integrated, educational, professionally trained principles have no problem sending our most severely autistic individuals  to the hospital type institution they do despise in Campbellton NB as far away as possible from the vast majority of families who have provided them with care and who love them.

It is time for NBers to stop cowering in fear and yelling "no institutions, no institutions" whenever we discuss the long term care needs of all adult persons with autism.  It is time to take an honest look at the real needs of NBers with adults and build a network and centre integrated into communities, with a focus on education, positive living experiences and individualized curricula with properly trained professionals and staff as close to families as possible around the province of NB.

Worries About the Future for Family Members of Autistic Adults

Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative.

 The above quote is from the JADD abstract below.  It hits one of the greatest autism issues square on the head. The future of autistic adults once family members can no longer provide the care they need in varying degrees.

The Restigouche Psychiatric Hospital located on NB's northern border

 far from most families in NB, and far from the autism expertise which has

 been developing in centrally located Fredericton. It is very difficult for families

 in the south to travel to Campbellton and back on a regular basis to maintain

 ties with severely autistic adult family members.

Parents in New Brunswick fought hard for early autism services in NB and for autism trained teacher aides to work with our children in our schools but when it comes to adult autism residential care and treatment the government has not budged.  Adults with severe autism requiring long term residential care and treatment are still sent, for purely political reasons, (as documented re the youth mental health facility)  to the northern NB border, to the  Restigouche Psychiatric Hospital in Campbellton, as far as possible from families, the overwhelming majority of whom live in central (near NB's autism expertise) and southern New Brunswick. The travel time particularly in winter or during summer construction seasons renders maintenance of family relationships sent to the Restigouce hospital extremely difficult.

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Journal of Autism and Developmental Disorders

Brief Report: What Happens When I Can No Longer Support My Autistic Relative? Worries About the Future for Family Members of Autistic Adults

• Authors
• Authors and affiliations

• Renske Herrema
• Deborah Garland
• Malcolm Osborne
• Mark Freeston
• Emma Honey
• Jacqui RodgersEmail author

1. 1.
2. 2.
3. 3.
4. 4.
5. 5.
6. 6.

Brief Report

First Online: 

28 July 2017

Abstract

Very little is known about autism and adulthood. Family members are often the primary support for autistic adults and frequently express concerns about what the future will hold and what support will be available for their relative. 

120 family members of autistic adults completed an online survey exploring concerns about the future for their relative. The most endorsed concerns were “their needs won’t be met” (77% worried weekly), “whether they will be happy” (72% worried weekly) and “who will care for them” (58% worried weekly). The results highlight the importance of implementing structured and timely support through collaboration with governmental policy, local commissioning and communication with charities to help prepare family members and their autistic relative for the future.

Mother of Adult Autistic Son files Complaint with New Brunswick's Ombudsman

Cheryl LeBlanc and her adult autistic son Ryan, Global News; 

New Brunswick mother of autistic son files complaint with province’s ombudsman:  

Global News senior correspondent Shelley Steeves has reported the story of Cheryl LeBlanc who has filed a complaint with NB's Ombudsman on behalf of her adult son with autism as reported in the article and accompany video on the Global website at New Brunswick mother of autistic son files complaint with province’s ombudsman:  

"A Shediac, N.B. mother frustrated over the lack of support for her son with autism has filed a formal complaint with the province’s ombudsman and the Premier’s Office.

Cheryl LeBlanc said people with disabilities in New Brunswick who want to get an education and work are being forced to live in poverty.

“Why do they make it so hard for our children to succeed in life? Our children with special needs will forever live in poverty,” she said. 

...

Exhausted and angry, she’s filed a formal complaint with the Premier’s Office and with the province’s ombudsman asking that people with special needs no longer fall under the umbrella of the Department of Social Development."

HLD: In addition to the above excerpts from the Global News report the following Facebook comments are taken from Cheryl LeBlanc's FB site and are posted here without any editing:

Cheryl LeBlanc

9 hrs · 

Hi my friends, since I sent an email to the Minister of Social Development as well to Hon Brian Gallant, and still no replies or acknowledgement, can you please continue to share both (article and my complaints), even if you shared it, please re-share. I no longer want a listening ear, I want action and change of policies. I had so many parents sending me messages, that they go through the same thing. This needs to go to the right person and make changes. I will share my status everyday, until I get a reply and telling me they want to meet with me and discuss a plan of action.

Cheryl LeBlanc

July 11 at 7:54pm · Moncton, NB · 

I know it's long ...Since Global News could only cover 2 minutes of my concerns, they could not cover all of it. This is part of what I sent to the Ombudsman, please share share share.

Parents with special needs children are exhausted and drained, not because of the disabilities of their children but because the system is so exhausting to deal with!! You cannot get an answer to any questions, we get transferred over and over to one person to another!! Constantly!!! Its beyond exhausting ...its crushing! how can an adult with special needs ever be independent when those of us deemed to be "normal" spend hours and days shuffling through the program called Social Development. For 18 years i have been dealing with them and trying to figure out what services are available, what is required , what new form i need to fill, but i continue to be lost and be lead by a system that seems to make it their mandate to complicate everything!!

We have special need children and it’s as if we are punished for this. We constantly hit walls, doors closes; the right hand does not talk to the left. One person tell us one thing, the other one tells us another thing.

The Adult Transition for my son has been the hardest I have ever had to deal with, they fall into the cracks of society and of the social development program and no one seens to care. There is nothing for them after school. What do we do? No one gives us information, we have to figure it out ourselves.

What option do our kids have after school : the Social Development Cheques or work at a workshop for $10.00 a WEEK!! Those ate the options! They are diagnosed Special Need, Adults with intellectual disabilities are treated the exact esame as a person applying for Social Assistance. They do not take into account that they are limited, either mentally or physically. Their requirements are so overwhelming that they will never be able to comply with all their rules and regulations (need to send their pay stub on a monthly basis, if they forget, their cheques are cut off, their monthly stmts of information are impossible to make sense of, calls are not returned, forms are in the dozens)Can you imagine them trying to become independent how difficult it would be? And to make them feel even more valuable, all cheques cashed at the bank requires that they

show them their little WHITE CARD. Don’t you think they were humiliated enough all their lives in school, friends, ect. They keep telling us they are included, but they are not. At LJR, they still have that Special Table for them. Its 2017!! Why are we still allowing this? Don’t get me wrong, Ryan loved LJR, but for the four years he was there, not once did he eat at LJR during Lunch, because he felt he had to sit at the designated table. Its heart breaking.

I open so many doors for my son, but it came with a price, my other son did not get all the attention that he should have had. Thank god I had a great job, so I could submit my leave and attended numerous meetings for Ryan.
Did you know that I am dealing with numerous people right now, do you think that Ryan could handle this? Or if even something happens to me, what will happen? I deal with a Case Worker, A social Worker, a person from NBACL, a person from College, his mentor, his employer, support worker, Home Access, than I have to put myself a reminder to send his Pay Stub every month. Oh and they do not like to receive by email, they rather fax or drop it off in person!! Then I have to worry about his prescription, and entertaining him And that is not counting his doctor’s appointment, his hearing aids, medications, etc. Us as parents will never have the independence life like other parents with children. If we leave for a weekend, or even an evening, we need to worry. Oh yes, I have relief weekend, but guess what, my mom or his brother cannot sign, but they rather we ask pure stranger or someone that Ryan is not comfortable with to entertain them. But they do not take into account, Ryan’s stability and comfort zone. It’s because there was abuse in the system and we are again punished by this. But they do not realize we have limited families.

Ryan is now in College, it took three years, and it took meetings, after meetings, forms after forms, and finally all was accepted. He won $4000.00 in bursaries, but he could not enjoy it, because HE IS ON Social Assistance and every cent was taken out! Ryan = Poverty.

They are special needs adults, can we not have a simpler system? Can we not strive to make their lives better and not a never ending battle if bureaucracy??

And then, when I can no longer take care of Ryan, what will happen? I have to place him in a seniors home at the age of 35??
These people they did not ask to be mentally challenged or physically challenged, but are constantly penalized and will live forever in poverty and in the grasp of a broken system.

I constantly talk to Parents who deal with this every day, and they are just drained and exhausted.

I pray to God that I will be healthy for the longest time.

I could go on and on and on.. I already talked to Cathy Rogers, she attended a forum, but they do not realize how corrupted Social Development is or the system. And they should not blame it was the Conservation, or Liberal, or it was limited budget. It’s called POLICY, EMPATHY, SYMPATHY, ORGANIZATION and going the extra mile for these challenged adults. Something needs to change. They need to make it easier for Adult with special Need, and the aging parents that still need to be on top of everything. I have been dealing with so many things ( all because of social development)and I have been crying for the last month. For the people that know me knows I do not cry for nothing, so this means I am at the end of my rope.

Cheryl and Ryan xox

MFAN Applauds Autism Canada Rejection of Canadian Autism Partnership Project

Medicare for Autism Now! has applauded Autism Canada for its rejection of the Canadian Autism Partnership Project which was defined succinctly by long time autism advocate Andrew Kavchak as a bureaucracy which has already spent considerable funds with no  autism service accomplishments. 

Autism Canada also indicates its support for evidence-based treatments of autism as it did when it supported the National Liberal policy resolution calling for funding of ABA treatment for autism under Medicare legislation OR by discussion with the provinces.  

MFAN also asks  Autism Canada to join MFAN in pushing for the Liberal Medicare for Autism Policy passed in Winnipeg 13 months ago to become law.

David Marley MFAN to Autism Canada	4:12 PM (14 hours ago)

Very good to see your comments in the accompanying News Release concerning the lack of proper financial disclosure, etc. respecting CAPP. The federal Liberals were absolutely right not to provide any further funding to this disgraceful exercise in wasting scarce tax-dollars and valuable time.

As another "autism advocacy organization with a national perspective on the issues facing those living with ASD and their families", the Medicare for autism Now! Society ("MFAN") encourages Autism  Canada, as part of seeking an effective national autism strategy, to make a priority of advocating for implementation by the Government of Canada of the Liberal Party of Canada ("LPC") policy resolution passed by delegates to its national convention held in Winnipeg thirteen months ago. 

MFAN continues its advocacy efforts respecting implementation of the LPC policy resolution in question, one which, as you know, we helped draft and drive through the LPC policy-making process. Your organization's letter of support at a crucial moment was very helpful and much appreciated. We will be pleased to have you join us in pushing for the resolution to become law.

David Marley

Director, MFAN 

www.medicareforautismnow.org

http://autismcanada.org/wp-content/uploads/2017/06/PressRelease_2017-06-27.pdf

Autism Canada rejects Canadian Autism Partnership Project

National advocacy organization calls for an actionable plan that provides equitable access to evidence-based treatments for all Canadians. 

June 27, 2017 – BOTHWELL, Ontario – Autism Canada has withdrawn its membership in the Canadian Autism Spectrum Disorders Alliance (CASDA) and its support of the Canadian Autism Partnership Project (CAPP). “As presented in its final form, CAPP is not a good plan. Moving forward, we will focus our efforts on working with our partners in the autism community and with the federal government to create an effective national autism strategy for all Canadians, to ensure equal opportunity and support for individuals with autism throughout their lifespan, regardless of where they reside in Canada.” said Dermot Cleary, Chair of Autism Canada's board of directors. “Our reasons for our withdrawal of support are threefold; a lack of financial disclosure, lack of transparency and lack of concrete, measurable deliverables.” "To the best of our knowledge, full disclosure of the CAPP financial documents have yet to be made public,” said Cleary. “Based on the financial statements that were provided to us, we don’t see justification for the stated fees and costs associated with the project." "In our view and opinion, there are several important gaps in project governance and reporting mechanisms that would allow for full transparency of the spending of public funds, and this is clearly not in keeping current with best practices.” added Cleary. "As the only autism advocacy organization with a national perspective on the issues currently facing those with ASD, their families and other stakeholders, Autism Canada believes it is incumbent upon us to provide a strong voice for those affected by autism and to make our concerns known to all Canadians," said Cleary. “We look forward to working with government to share our expertise, build consensus and help inform public health policy as it regards access to evidence-based treatments of autism.” “On behalf of our stakeholders, we will act as the catalyst to align and galvanize our provincial and territorial partners to ensure a synergized and equitable approach to the provision and delivery of evidence-based treatments is available to all Canadians.” 

-30- 

About Autism Canada Autism Canada is the only autism advocacy organization with a national perspective on the issues currently facing those with ASD, their families and other stakeholders. Together with our provincial and territorial counterparts, Autism Canada collaboratively works to share expertise, build consensus and help inform public health policy as it regards access to evidence-based treatments of autism. In addition to encouraging the sharing of best practices across provincial boundaries, Autism Canada actively promotes national dialogue on the most effective strategies for building equitable access to funding and services. To learn more, please visit www.autismcanada.org.

MEDIA CONTACT: Dermot Cleary Chair, Autism Canada dcleary@autismcanada.org

NB and Canada Must Wake Up and Confront the Autism Premature Mortality Crisis

"Autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time."

 Autistica: Personal tragedies, public crisis, page 3, executive summary.

As set out in the Autistica Report  the recent very large Swedish study adds to a well documentef but largely ignored reality: There is a shocking health crisis which society must address: the early deaths of persons with autism disorders.

NB and Canada have given no indications that they are aware of this crisis let alone how to deal with it.  It is time we all woke up in this country and come to grips with this shocking reality.

Autistica is a leading UK autism research charity which both funds and campaigns for medical research to understand the causes of autism, improve diagnosis, and develop new treatments and interventions.

From the Executive Summary, Page 3:

Many families and autistic individuals have raised concerns over early deaths in autistic people. Ground-breaking new research now confirms the true scale of the mortality crisis in autism: autistic people die on average 16 years earlier than the general population. For those with autism and learning disabilities, the outlook is even more appalling, with this group dying more than 30 years before their time. 

Research studies across the world have confirmed that autistic people are at an increased risk of early death. A large study from Sweden in late 2015 made this case stronger than ever by analysing a very large, high quality dataset to compare the general population, autistic people, and people with both autism and a learning disability. 

Two findings relative to the general population are particularly striking: 

Yet there is still very limited awareness and understanding of the scale of premature mortality for the 700,000 autistic people in the UK and hence very little action to date to reduce it. This hidden crisis demands a national response. 

The large Swedish study as reported by Autistica points out that there are a number of reasons for the shocking early mortality rates of autistic adults but indicates two factors which are particularly significant causes of early death: epilepsy among persons with autism and learning disabilities and suicide among those with autism without a learning disability as stated in the image above:

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. 

Multiple studies suggest that between 30% and 50% of autistic people have considered committing suicide.16,17, 18 One study found that 14% of autistic children experience suicidal thoughts compared to 0.5% of typically developing children.19 Another recent study of adults with Asperger syndrome found that two-thirds of participants had lifetime experience of suicidal thoughts and a third of participants had planned or attempted suicide.20 

While there are certainly examples of good practice in some locations, the comparative statistics indicate that the majority of mental health and related services are not sufficiently skilled to meet the needs of autistic people with an additional mental health problem, including suicidal thoughts. Numerous personal accounts illustrate how this impacts on the lives of autistic individuals and those who love them. 21