Autism Reality

Family With ONLY 3 Children With Autism

Unlike the Kirton’s of Utah who have six children, all with an Autism Disorder diagnosis, Randy and Lynn Gaston have ONLY 3 children, triplets, with autism. The Washington Post, in an article by Susan Deford examines the realities of family life for this family with triple the challenges, and impacts on family life, of having a child with autism.

No Group Discount For Autism Care

Now even mundane details of the daily routine are carefully orchestrated, driven by the boys’ need for sameness: identical sheets on their beds, baths in the same order every night, the same kind of pizza from the same kind of box.

The Gastons rarely go out as a couple; it’s difficult to find babysitters. The family has never eaten in a restaurant together, because crowded, unfamiliar environments sometimes make the boys anxious and upset. And the couple never get a full night’s rest. Like many autistic children, the boys don’t sleep well, going to bed at 8 p.m. and often waking for the day between 2 a.m. and 3 a.m.

A recent attempt to go to a park came to an abrupt halt when Zachary started yelling in the car. Lynn pulled over and found the reason: Hunter had taken off his shoes and socks, disrupting his brother’s uneasy equilibrium.

The Gastons’ experience, though extreme, is shared by growing numbers of families.

http://tinyurl.com/yud37c

June 4, 2007 Posted by | auism disorder, autism, autism awareness, family, family stress | Leave a comment

UK Study Confirms ABA As Most Effective Intervention for Autism

A UK Study has confirmed, again , that Applied Behavior Analysis, ABA, is the most effective intervention method for children with autism. The study was a comparative study of different teaching interventions for children with autism in a community setting and looked at the effectiveness of the interventions on children’s intellectual, educational, adaptive behavioral functioning and family stress levels. As reported on News-Medical.Net, Children supported by Applied Behaviour Analytic (ABA) programmes made greater intellectual and educational gains than children in other intervention programmes, while Special Nursery programmes also produced gains, compared to other less time-intensive programmes. Ideological opponents of ABA , some of whom actually oppose treating or curing autism, will not be convinced but parents seeking to help their autistic children enjoy a better quality of life should understand that this recent study is preceded by hundreds of other studies demonstrating that ABA is an effective way to help their children enjoy a better quality of life.

http://www.news-medical.net/?id=25877

June 4, 2007 Posted by | Applied Behavior Analysis, autism, education | 2 Comments

One Family, Six Children with Autism, WOW

I have personally met families with more than one child with autism. I have met some with 2 autistic children and some with 3 but SIX! My son Conor is profoundly autistic and, because of his autism, our family life is affected dramatically. Every aspect of daily life including scheduling work activities and vacation have been affected. Conor requires constant 24/7 adult supervision. I can only imagine what life must be like for the Kirton’s of Utah who have been blessed with six children all of whom have an autism disorder. The Kirton’s story is featured on deseretnews.com and tells of the many challenges faced by the Kirtons in raising and caring for their six children with autism. John Kirton has had to find new employment after losing a job after missing too much work to tend to home matters. Robin Kirton made an off hand remark out of frustration about buringing down her messy home which landed the Kirtons in family court. The legal process is now winding down but the court proceedings also prompted court ordered assessments for all six children as a result of which it was discovered that two of the six had Asperger’s. The deseretnews.com article also talks about “stoppage” which is the name some geneticists give to the phenomenon which occurs when parents stop having children after having a child with autism.

John Kirton with 5 year old daughter Sarah

If the Kirtons are googling their names on the internet, or otherwise happen across this blog, I commend you for facing your challenges with determination and humor and I wish your family ” the very best ” as we say here in Atlantic Canada.

http://deseretnews.com/dn/view/0,1249,660226195,00.html

June 3, 2007 Posted by | autism, autism challenges, autism diagnosis, family stress | 2 Comments

Hello and Welcome to Autism Reality

Conor on the Trail

Conor, My Buddy

I am starting this WordPress blog site to encourage reality based discussions of autism, autism research, causes, treatments, education, residential care and public policy. I encourage you to contact me or comment to offer your views and opinions. Profanity and harassment of anyone public or otherwise will not be permitted but open, candid, and honest dialogue will be encouraged. I expressly state my bias. My son, Conor, is autistic, profoundly autistic, and although I love HIM deeply, I do not love his autism which is a serious neurological disorder because of which Conor requires adult supervision on a 24/7 basis. Conor, and other autistic children, deserve evidence based treatment, education and … some day a cure for their autism.

June 3, 2007 Posted by | autism, autism challenges, autism diagnosis, Conor | Leave a comment

Autism challenging for all

Autism challenging for all

Parents happy with province’s support, but want more.

By Tony Kiritsis

Published Thursday May 24th, 2007

Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he’s unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn’t care, more concerned about how he will get down.

Just by looking at Ryan as he cautiously approaches the slide, toward Todd’s coaxing voice, it’s as if there’s nothing wrong. But, behind his blue eyes there’s something different about him and unlike other four-year olds his age, he can’t talk. If he could, he would probably tell you exactly what’s wrong.

Instead, he will pace around the room, his hands sometimes flapping, offering the impression he’s trying to master a one-handed clap.

At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he’s scared and frustrated and needs to be heard.

Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.

This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.

Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.

Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.

In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.

“We thought it was the end of the world,” says Todd, when he and Tamara discovered Ryan was autistic.

Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.

“When your child is autistic it’s a fight you’re in for life. Some people do give up and I don’t criticize them,” says Harold Doherty, a local lawyer and autism activist.

Doherty has been fighting for better services on the part of his family, and others in the community.

Karen Hammel says she understands the strain that’s placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she’s placed his needs first.

“We don’t eat out, we don’t go to movies,” says Karen. “House repairs haven’t been taken care of. We just go without things that most people don’t go without.”

Like many parents of children with disorders Todd and Tamara were in denial about Ryan’s condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.

“We were pissed at ourselves for not picking up on it,” says Todd. “It was as if we failed as parents.” Autism is a disorder with one face but wearing multiple masks to conceal its identity.

Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.

Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.

Since the diagnosis the Downey’s have found support in Fredericton’s autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.

It’s here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.

Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.

Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.

When the centre’s current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.

Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.

The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.

In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.

“It pretty much seems that 20 hours a week is rock bottom,” Dr. McDonnell says. “Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results.” Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, “We came up with 20 hours, and obviously that’s at the lower end, but the other monies and services that children can tap into is what we call integrated daycare.” Bulmer says parent involvement at home also contributes to the child’s therapy and learning.

Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren’t trained therapists.

“It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area,” says Todd. “We’ve seen serious improvement and that makes us happy.” The therapy Ryan and other children his age receive may be adequate, but more could always be done.

“You do the intensive intervention up front because that’s where you’re guaranteed to get the most improvement and the most change,” Bulmer says.

The money the Downey’s receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.

Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.

“We’ve already cashed in some retirement money to help him and we’ll probably have to cash more,” says Tamara.

Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.

“I’m most worried about the school system,” Todd says. “I think he’s going to be ready for school, but is the school going to be ready for him?”

Harold Doherty believes the system isn’t prepared to handle these students and changes need to be made. “The system says teachers teach and that’s it.”

Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.

With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.

Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.

Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick’s College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.

“What’s the cost going to be when you have a child that’s not appropriately educated? You’re putting money into teaching them pre-school and when they go to school, if that support isn’t continued, there’s actually the chance some kids could digress,” Tamara says.

New Brunswick’s Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.

“If it’s at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year,” says Lamrock.

As parents like the Downeys fight for their son’s well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.

“The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can’t independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later,” Tamara says.

Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren’t integrating. She has taken it upon herself to integrate her son into society.

Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.

As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can’t achieve.

“For older individuals the need is proper residential care,” says Doherty. “Unless you can care for your child, you have to place them in a group home.”

Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.

“Someday it would be nice if adults with autism had some type of program that would be available to them and their families,” says Pelletier. While Family and Community Services’ long-term care plan provides Christopher with a care worker and a disability pension, it’s still not enough.

“I’m currently fighting to get clinical supervision covered,” Karen says. The cost for this service is approximately $10,000 a year.

As it stands, the Department of Family and Community Services and the Department of Health and Wellness won’t cover clinical supervision because it’s considered an indirect service.

Exhausting all her governmental avenues, if a resolution isn’t achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.

The Downey’s have wrestled and settled with a lot in a short period of time, even though they’re in the early stages of the fight for Ryan’s future.

“We’ve come to terms that this is how it’s going to be,” Todd says. “I’ve come to terms that I’m probably not going to have a career. We’ve come to terms that we aren’t having another child.”

The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.

Karen knows she will always be fighting for Christopher. One day she won’t be able to take care of him anymore and wonders what will happen to him in the future.

“No matter what it is you’re looking for, you always just have to keep repeating and repeating it to the government. After a while…you feel so beaten down,” Karen says.

The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.

The future for adults like Christopher would be bleak, if it weren’t for the determination of parents like Karen, who are currently laying the groundwork for the next generation.

http://www.canadaeast.com/ce2/hereroot/index.php?paper=here

May 25, 2007 Posted by | aba, adult care, autism, Autism Connections Fredericton, Autism Society New Brunswick, education, Paul McDonnell, UNB-CEL Autism Intervention Training Program | Leave a comment

FEAT-BC Goes Coastal, Salutes Autism Champions at Halifax Sat May 26, 2 to 5


FEAT-BC has been a leader in the autism struggle in Canada and now they are coming east to Halifax this Saturday May 26 from 2 to 5 at the Holiday Inn to salute four federal autism champions Andy Scott, Peter Stoffer, Shawn Murphy and Jim Munson, and to meet with Maritimers to discuss development of a national autism federal election strategy. Interested in autism? Then come on out!

“FEAT BC goes coastal” tour to Halifax

Vancouver, B.C. – Jean Lewis, founding director of FEAT-BC (Families for Early Autism Treatment of BC) today announced that she and other representatives of FEAT-BC will be travelling to Halifax on Saturday, May 26th for a gathering of parents of autistic children and their supporters from across the Maritimes.

“One purpose of this event is to recognize the leadership of MPs Shawn Murphy, Andy Scott, and Peter Stoffer, as well as that of Senator Jim Munson, in the fight to get Medicare coverage for autism now,” said Lewis. “These men have distinguished themselves among Canadian parliamentarians with their dedication to curtailing this emerging health care crisis. Parents of autistic children and supporters look forward to thanking them personally.”

The principal purpose of the gathering is to organize a team of FEAT activists for deployment during the upcoming federal election in select constituencies across the Maritimes.

On the way to Halifax, stops are planned in Ottawa and Toronto for meetings with Ontario-based parent activists.

At 11:00 a.m. on Thursday, May 24th, a news conference will be held in the Charles Lynch Press Room on Parliament Hill.

FEAT-BC (Families for Early Autism Treatment of BC) is a not-for-profit volunteer organization of parents and professionals working towards universal access to effective, science-based treatment for all Canadians diagnosed with autism in Canada.

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For further information, contact: Jean Lewis at jean.lewis@telus.net, or telephone 604-925-4401 or 604-290-5737.

May 23, 2007 Posted by | Andy Scott, autism, FEAT, Jim Munson, national autism strategy, Peter Stoffer, Shawn Murphy | Leave a comment

No Autism Just Fredericton In May






It was a beautiful May day in Fredericton. A perfect day to do a bridge walk, from Westorland Street Bridge, along the Saint John River, across the pedestrian bridge, (former train bridge) through the down town, across the Westmorland Street Bridge and home to Nashwaaksis on the North side of Fredericton. But who let that Blogger into the picture?

May 22, 2007 Posted by | autism, blogger, Fredericton, Nashwaaksis, Saint John River | 2 Comments

Layton, Stoffer Slam Zero Conservative Support for Autism




NDP leader Jack Layton and NDP MP Peter Stoffer have slammed the Harper Conservatives for failing to provide any funding whatsosever for autism in its recent federal budget. The Conservatives did not ante up a single penny for autism.

Meanwhile Mike Lake, the Conservative MP and father of an autistic child, who opposed the Shawn Murphy attempt to ensure autism coverage in the Canada Health Act, has not offered any public comment on the failure to provide a single penny for autism in his party’s budget. Emails sent to his office are responded to by a staffer who informs that Mr. Lake has received too many emails on the subject of autism to respond personally.

http://www.ndp.ca/page/5057

Stoffer slams federal government for not providing autism funding in budget

Fri 23 Mar 2007

OTTAWA – NDP Leader Jack Layton and Peter Stoffer (Sackville-Eastern Shore) slammed the federal government today for not providing funding in the federal budget to help families with autistic children.

“Families with autistic children are in crying need of support,” said Layton. “They are very disappointed that the Conservative government has ignored their needs in the budget. Providing support for these families should be a bigger priority for the federal government than corporate tax cuts.”

“It is also hypocritical that the Harper government is ignoring the autism motion M-172 passed by the House of Commons last December,” said Stoffer. “When Harper was in Opposition, he constantly criticized the Liberal government because it did not respect the votes of the House of Commons. It is surprising how quickly the Conservatives have become just like the Liberals.”

M-172 requires the federal government to work in cooperation with the provinces and territories to establish national standards for treatment and delivery of services, study funding arrangements, create a national surveillance program, and provide more funding for health research on autism.

“The federal government must work with the provinces and territories to find a way to include autism therapy in the health care insurance plan of every region across this country,” said Stoffer. Stoffer introduced a private members bill (C-211) to this effect last fall.

Stoffer also expressed his profound disappointment with the federal government in failing to recognize the Veterans First Motion and ignoring the issue of Agent Orange and Agent Purple in the budget. The Veterans First motion was passed in November 2006 and suggested five key reforms that would deliver long overdue fairness and security for Canadian Forces veterans and their families.

“With a $14.2 billion dollar surplus, how can the federal government not provide more funding and services for families with autistic children and for veterans and their families? It is absolutely shameful. It is time for the federal government to be proactive in the lives of Canadian families living with autism.”

March 24, 2007 Posted by | autism, budget, Canada Health Act, Jack Layton, Mike Lake, NDP, Peter Stoffer, Stephen Harper | 2 Comments

The Autism Knowledge Revolution

We are living in a revolutionary era. The hardware era is giving away to the software age, and as a result, the economic and social landscape of the world is undergoing seismic changes. The Knowledge Revolution, Noel M. Tichy, Ph.D., 2002

The world is awakening now to another knowledge based revolution – the revolutionary explosion in our knowledge of autism disorders. Like other revolutions the Autism Knowledge Revolution also promises to be seismic in its impact. Recent autism reports have brought news of the Autism Genome Project with studies providing new information about the genetic bases of autism disorders. Gene mutations are being identified as the cause of some instances of autism. A new study suggests that the amygdala, a part of the brain associated with emotional learning and fear, shrinks in people with autism, as a result of chronic stress caused by social fear in childhood.

Like other revolutions there are those who fear the onset of the Autism Knowledge Revolution and its impact. They stand on principle and cloak their fears in the mantle of human rights. Fear mongering is already spreading in relation to genetic research in autism with wild speculation about what the purveyors of such fear describe as a eugenics program similar to some of history’s worst atrocities. Others express a more practical fear; that our rapidly increasing knowledge in the genetics of autism will be of no value to older autistic children and adults. As the father of a severely autistic 11 year old boy I understand that particular fear but I do not believe that genetic research will yield only clues to prevention of autism occurrence or education of the very young. It is quite possible that our knowledge of autism disorders will assist in understanding how autism works in all individuals with an autism disorder and that may lead to new ways of understanding autistic persons and how to enhance their lives.

Hopefully one result of the Autism Knowledge Revolution will be the end of some of the needless hostility surrounding the vaccine/mercury autism debate. The believers in the Mercury Theory have clung to their theory with almost no scientific support and have resorted in desperation to belief in a world wide conspiracy involving “big pharma”, big government and a “bought and paid for” world science community doing the bidding of Big Pharma. Some opponents of the Mercury Theory have been just as virulent and would censor any reference to autism as a disorder, disease or medical condition by any term. More research, more knowledge, may well show some environmental factors in the onset of autism, mercury based or otherwise. Or it may disprove conclusively any such connections.

The future holds promise but never provides promises or guarantees. Some of the research currently under way may lead to dead ends; part of the scientific process of elimination. But the increase in knowledge of autism will undoubtedly increase our uderstanding of autism. Surely a good thing in and of itself.

The autism knowledge revolution does provide hope, hope of a cure for those who seek it for themselves or their loved ones. It is a hope based not on resignation or “acceptance of autism”. It is a hope based on solid scientific research as most of our advances of the last 300 years have been. There are no limits at this time on where this knowledge might lead. While concern that it will not assist older autistic persons is understandable it does not automatically follow that such research will be of no benefit to them and all autistic persons, regardless of age.

Those of us who are not ourselves scientists, and do not imagine ourselves to be scientists, can still assist by involvement in organizations, such as Autism Speaks, and CAIRN (Canadian Association Intervention Research Network), which have been such powerful positive forces in the advancement of autism research.

We can all lobby, create public awareness and raise funds.

We can all join the Autism Knowledge Revolution.

March 18, 2007 Posted by | autism, Autism Genome Project, Autism Knowledge Revolution, autism research, autism speaks, CAIRN, mercury | Leave a comment

Conor Having a Ball, An ABA Therapy Ball



Conor’s ABA therapy does not involve the use of electric shocks, slaps on the wrist or any other type of aversive. ABA today is practiced with positive reinforcement which can take many forms – from praise to a favorite treat to playing with a toy. One of Conor’s favorite therapy props is a large ball. No therapy today but Conor doesn’t need anyone to show him how to have fun!!

March 17, 2007 Posted by | aba, Applied Behavior Analysis, autism, Conor, fun, therapy | 2 Comments