We Need #Adult #Autism Care in New Brunswick Because Our Children Grow Up.

We have made progress on early autism treatment and school services in New Brunswick, Canada. When our children grow up, however, there is very little for them especially if they have severe autism with intellectual disability. 

The 1st Picture, above,  is Conor 2 months after his initial autism diagnosis at age 2. The smiling, happy, loving boy you see in most of these pictures. ... The 2nd picture is a nervous, anxious Conor, aged 20, and aware this is his last year in the school he loves. 

We need adult autism specific services. Join us Oct 29 beginning at 10 am at the Legislature, Fredericton. Your child too will grow up if they haven't already done so. Conor's Dad.

                                                       

SUDEP Awareness Day October 23, 2016 - SUDEP, Epilepsy and Autism

October 23, 2016 is SUDEP Awareness Day. The acronym SUDEP stands for Sudden Unexpected Death in Epilepsy.  The Epilepsy Foundation site has an informative page about SUDEP which is set out below before the Epilepsy Facts page of Epilepsy Canada. Persons with autism and their famiilies should be aware of epilepsy and the possible risks of SUDEP. The information below from Epilepsy Canada indicates that approximately 0.6% of the Canadian population has epilepsy. B y comparison Autism Speaks on its Autism and Epilepsy Resources page estimates that as many as 33% of persons with autism also suffer from epilepsy an extraordinary difference from the general population.  

Autism and Epilepsy Resources

It is estimated that as many as 1/3 of individuals with autism spectrum disorder also have epilepsy. Epilepsy is a brain disorder marked by recurring seizures, or convulsions.

Experts propose that some of the brain abnormalities that are associated with autism may contribute to seizures. These abnormalities can cause changes in brain activity by disrupting neurons in the brain. Neurons are cells that process and transmit information and send signals to the rest of the body. So overloads or disturbances in the activity of these neurons can result in imbalances that cause seizures. 

To learn more about how to recognize and treat epilepsy, visit the Treatments section of our What is Autism page.

Recognizing Epilepsy Symptoms

Seizures can begin at any age. Characteristic symptoms include:

• Unexplained staring spells
• Stiffening of muscles
• Involuntary jerking of limbs
• Facial twitching
• Unexplained confusion
• Severe headaches

Other less-specific symptoms can include:

• Sleepiness or sleep disturbances
• Marked and unexplained irritability or aggressiveness
• Regression in normal development

Types of Seizures

Like autism, epilepsy exists on a spectrum. Severity varies widely among people with epilepsy. There are several types of seizures, each with somewhat different symptoms:

• Tonic-clonic seizures are the most common. Also known as gran mal seizures, they produce muscle stiffening followed by jerking. Gran mal seizures also produce loss of consciousness.
• Absence seizures can be difficult to recognize. Also known aspetit mal seizures, they are marked by periods of unresponsiveness. The person may stare into space. He or she may or may not exhibit jerking or twitching. 
• Tonic seizures involve muscle stiffening alone. 
• Clonic seizures involve repeated jerking movements on both sides of the body. 
• Myoclonic seizures involve jerking or twitching of the upper body, arms or legs. 
• Atonic seizures involve sudden limpness, or loss of muscle tone. The person may fall or drop his or her head involuntarily.

SUDEP: Sudden Unexpected Death in Epilepsy

We know that the combination of autism and epilepsy is often associated with overall poor health, and in extreme circumstances, premature death. Though most neurologists and physicians choose to ignore this frightening topic, it is important to know that in rare occasions, epilepsy can be fatal. The incidence of Sudden Unexpected Death in Epilepsy (SUDEP) ranges in different studies from 0.9 – 93 cases per 10,000 people per year (Tomson et al. 2008). 

SUDEP is more likely in people with uncontrolled grand mal seizures, or those who are having seizures but not taking adequate doses of antiepileptic medications. Causes include pauses in breathing, heart rhythm problems, brain dysfunction, or a mix of these. Click here to learn more information about SUDEP from epilepsy.com. 

There are various strategies to help prevent SUDEP. Obviously, controlling seizures as much as possible is the best option. Finding the right medicines and ensuring that your loved one takes the proper dosage at the proper time is critical. There are lots of researchers and companies currently working on seizure monitors to notify caretakers when a seizure is beginning. There are currently some seizure monitors that families have found helpful as the monitors are able to alert them when a seizure is occuring or about to occur. A few bed monitors are listed in the resources below. 

About SUDEP: A Deadly Result of Uncontrolled Seizures

How common is SUDEP?

People with epilepsy die prematurely at a higher rate compared to the general population.¹The most common cause of death from epilepsy is sudden unexpected death in epilepsy, known as SUDEP.

There are at least 2,750 cases of SUDEP each year — meaning that almost 1 in 1,000 adults with epilepsy will die as a result of SUDEP every year.² For those adults with uncontrolled seizures, the risk increases to 1 in 150.³

When is SUDEP likely to occur?

SUDEP almost always associated with generalized tonic-clonic seizures and is less likely afterfocal (or partial) seizures.

Learn more about types of seizures and their associated risks.

Reducing the Risk of SUDEP

Experts agree it is imperative to reduce the number of generalized tonic-clonic seizures experienced by people with epilepsy.

Having a generalized tonic-clonic seizure increases the risk of SUDEP for a person with epilepsy. This singular fact makes an indisputable case for urgently addressing seizure control.

Uncontrolled seizures can pose a deadly threat for people with epilepsy.

Understanding and Preventing Risk Behaviors

There are a number of situations or behaviors that can increase the risk or likelihood of seizures. To help people with epilepsy reduce risk of seizures and SUDEP, experts have identified four actionable behaviors. This essential "to-do list" includes:

1. Take medication as prescribed
2. Get enough sleep
3. Limit alcohol
4. Strive to stop seizures

Epilepsy Facts

Did you know?

• Epilepsy is a physical condition characterized by sudden, brief changes in how the brain works. It is a symptom of a neurological disorder - a disorder that affects the brain and shows itself in the form of seizures.
•  Epilepsy is a disorder, not a disease; it is not contagious.
•  Approximately 0.6% of the Canadian population has epilepsy. This includes those who take anticonvulsant drugs or who had a seizure within the past 5 years.
• Due to the stigma surrounding epilepsy and the prejudice with which society has historically treated people with epilepsy, many with the disorder are reluctant to admit it or to seek treatment. Thus the prevalence of epilepsy is likely much higher.
• Each day in Canada, an average of 42 people learn that they have epilepsy. Each year an average of 15,500 people learn they have epilepsy; 44% are diagnosed before the age of 5, 55% before the age of 10, 75-85% before age 18 and 1% of children will have recurrent seizures before age 14. 1.3% are over the age of 60. This means that about 60% of new patients are young children and senior citizens.
•  In approximately 50% of cases of childhood epilepsy, seizures disappear completely.
•  In 50 - 60% of cases, the cause of epilepsy is unknown. In the remainder, the following causes are most common: brain tumour and stroke, head trauma of any type. The more severe the injury, the greater the chance of developing epilepsy.  Injury, infection, or systemic illness of the mother during pregnancy, brain injury to the infant during delivery may lead to epilepsy and aftermath of infection (meningitis, viral encephalitis)* poisoning, from substance abuse of alcoholism
•  Events that may trigger seizures include:  stress,  poor nutrition,  flickering lights, skipping meals,  illness, fever and allergies, lack of sleep, emotions such as anger, worry, fear and others, heat and/or humidity.
•  The major form of treatment is long-term drug therapy. Drugs are not a cure and can have numerous, sometimes severe, side effects.
•  Brain surgery is recommended only when medication fails and when the seizures are confined to one area of the brain where brain tissue can be safely removed without damaging personality or function.

Autism Advocate Cynthia Bartlett Condemns New Brunswick's Inhumane Treatment of Autistic Adults

New Brunswick  autism advocate Cynthia Bartlett has delivered a well informed and powerful condemnation of  New Brunswick's inhumane treatment of autistic adults and cals for support at the adult autism care protest at the New Brunswick Legislature in Fredericton October 22 at 10 am. 

There will be a protest at the LEG October 22nd and 29th, 10 am, over the unwillingness of this and previous governments to provide autistic specific adult programming and residential care. As a parent my biggest fear was if I were to die first, where my son, Charlie, would go. My wish was that he would live in an environment which was appropriate for his high needs, be safe, be stimulated and cared for sensitively in his own vicinity. However there is no provision that is appropriate in New Brunswick at the present time. Many talks ,approaches, advocacy, legislative motions for this this gap in service have been made to our government, and absolutely no real response or interest has been shown. 

Aging parents and caregivers will die, FACT. So some of our most vulnerable would and have been suddenly thrust into inappropriate care, shunted around the province usually ending up at a psychiatric hospital up north, over drugged with no constructive programming, and any loved ones left far away. This is Canada?? Government is accountable to our most challenged. The Canadian constitution speaks to the Security of the Person. Please show your support at the LEG.

- Cynthia Bartlett, Facebook, October 11, 2016

October is Autism Awareness Month in Canada - Time for Action on Adult Autism Care

OCTOBER IS AUTISM AWARENESS MONTH IN CANADA

It is time for action on adult autism care. Join us at the NB Legislature on October 22 at 10 am,

October is October Awareness Month in Canada. A more accurate title is October Inaction Month since nothing of significance has been done to help persons with autism in many years and nothing of significance has been done to help severely autistic youth and adults. This year we will make an effort to dent the conciousness of decision makers, and trigger a burst of conscience, with information demonstrations on October 22 and 29 starting at 10 am at the NB legislature.

YOU can come out and make a difference for autistic youths and adults! We have had enough of cruel and inhumane treatment of severely autistic adults in NB. We don't send them to locations on jail properties as we once did as reported 11 years ago in this Toronto Star article set out below, or to out of province treatment facilities. Nor should we send them to our northern border, to the psychiatric hospital in Campbellton far from most families who are restricted in their ability to travel between 10-14 hours there and back to see their family member on each visit.

Autistic boy kept in New Brunswick jail

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

Autistic Adults Denied Humane Care in NB - Demonstration at the NB Legislature in Fredericton is October 22 at 10 am.

Above: My son Conor, now 20 with severe autism and related challenges. 

Below :Video by an old friend Charles LeBlanc who helped us  when we advocated for early autism intervention. 

Yesterday Charles caught me on the sidewalk with questions about our adult autism care demonstration planned for October 22 10 am at the NB Legislature grounds.

Adult Autism Care - What is Needed: "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."

Paul McDonnell, CBC Analysis, September 2010

Evidence Based Autism Advocacy In Canada - It Started in British Columbia

I took this photo in Vancouver 3 years ago while attending a legal conference. I post it now as a thank you to the many parents in British Columbia, including the recently departed Michael Lewis, who kick started, and continued, the fight for evidence based autism treatment and services in Canada. Many younger parents across Canada may not be aware of your incredible contributions to the lives of their children. This older dad is aware of that contribution and I will not forget.

Adults with Severe Autism and Related Disorders are Invisible to NB Government

In New Brunswick adults, like my son Conor, adults with severe autism, intellectual disability (40-50% of persons with autism) and epilepsy (20-40% of persons with autism) do not share in our supposedly inclusive community.  They are largely invisible, as in the images on the right of my son below,  to government,  politicians and civil servants. They are not seen as the wonderful human beings that are loved by family as is my son, who would benefit from frequent family contact when they can no longer be cared for 24/7 at home.

There are general group homes and individualized apartment arrangements with some supervision for those who are higher functioning.  As severity increases the likelihood of life spent in the Restigouche Regional Psychiatric Hospital in Campbellton on our northern border with Quebec increases.  In the past 2 persons with severe autism challenges were sent out of the country to Spurwink Maine for treatment for a number of years at $2-300,000 per person per year. Some have lived in general hospital wards. 

Some of our politicians enjoy photo op walks with young autistic children and cutting the cake at events at autism community centres that provide no treatment or care.  They show little interest in providing the long term, in some cases permanent, residential care and treatment facilities that adults with autism will need.

In a conversation with the new Minister of Child and Family Services,  or Social Development or Families and Children or whatever they are calling their Department today (they seem to spend more time thinking up new names for their department then addressing needs of adult autistic persons in our province) he seemed to think  Restigouche Psychiatric Hospital is all that is needed to fulfill their needs.  He didn't seem to think that it's location many hours drive from most NB families was a big deal. In any event that  was some kind of justice for those in the North who travel further south for various reasons.  And in a complete confession of ignorance of autism realities particularly severe autism realities, he didn't think autism required any specific treatments or accommodations. The Minister doesn't see the challenges of severely autistic adults.  For him, my son and other severely autistic adults are invisible.

As the parent of a 20 year old severely challenged autistic son and a long time public autism advocate for services such as early intervention, autism trained school aides and resource teachers and reinstatement of the Stan Cassidy autism service,  I beg to differ with Minister Horsman. But he needn't accept my word on it being a mere parent who has lived with autism 24/7 for 20 years.  He can review the principles espoused by NB autism expert Paul McDonnell a Professor Emeritus (Psychology) and Clinical Psychologist who articulated the need over 6 years ago for an autism network.

McDonnell,  in a CBC interview and analysis over 6 years ago, stated that an autism center that could provide long term, permanent care for those with severe autism and oversight to autism specific group homes around the province was needed to address the needs of autistic adults with varying levels of severity:

“Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or  out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families,  that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

 NB has been developing increasing expertise in centrally located Fredericton.  It is time to get it done and time to find some political leadership that will take an interest in the real challenges of autistic adults.

New Brunswick needs an adult autism center ... yesterday