Autism's Invisible Adults In the New York Times

Congratulations to the New York Times for running a small guest opinion piece about the fate of autistic adults. The article, Growing Old With Autism, is written by Karl Taro Greenfeld, the brother of a low functioning autistic adult and the author of Boy Alone: A Brother’s Memoir. Mr Greenfeld makes the argument that the focus of autism awareness, fund raising and government response has been almost entirely on autistic children. The result has been a lack of resources in critical areas such as residential care and employment opportunities for autistic adults, particularly low functioning autistic adults.

Mr Greenfeld's brother is in his 40's and is low functioning. I am the father of a low functioning 13 year old who, like many parents in that situation, is struggling to prepare for my son's future. I am pleased to see the NYT devote some attention to this serious situation facing autistic adults, particularly low functioning autistic adults.

Mr. Greenfeld quite correctly points out the emphasis on autistic children in today's autism. awareness. Although he talks about his low functioning autistic brother's challenges he does not address directly another issue confounding the problem for low functioning children now becoming autistic adults - the media misrepresentation of autism disorders as being reflected in the realities of persons with high functioning autism spectrum disorders. By and large the media loves to dote on the high functioning autistic and Aspergian media trotters like Amanda Baggs, Michelle Dawson, Ari Ne'eman and Alex Plank. Few mainstream media features are built around the invisible autistics - the low functioning autistic adults living in institutional care or otherwise living very restricted lives dependant on the care of others.

This father of a teen age boy/young man with Autistic Disorder and profound developmental "delays" says thank you to Mr. Greenfeld and the New York Times for this small step towards reminding the world about the invisible autistics, the low functioning autistic adults, the ones who do not attend university, pose for fashionable photo shots in high powered magazines or run from camera to camera shouting "we don't want to be cured".

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Autistic Adult Care Improvements Long Overdue in New Brunswick

I have said often on this blog that I am very happy with the progress that has been made here in New Brunswick in addressing the needs for evidence based autism treatment and in ensuring that autistic children receive a real, quality education. There are still problems that have to be addressed concerning preschool interventions for and education of autistic children but the distance we have traveled in the six years since then Health Minister Elvy Robichaud announced in the New Brunswick legislature that the government was committing funds specifically to autism is remarkable. That progress has, for the most part though, been confined to autistic children. New Brunswick's adults with autism disorders are badly in need of improvements to the barely existent residential care system for autistic adults.

Despite the substantial, and increasing, numbers of autistic adults and the complexity of the challenges they face New Brunswick does not have a residential care system dedicated specifically to adults. New Brunswick adults with autism who require residential care currently live in group homes with persons with other challenges. The problem with a general residential care system is that the staff working in such places will not generally have autism specific training. Nor are the locations necessarily appropriate for persons with autism disorders.

The good will of New Brunswick's political leadership, from either of the two parties that have governed, is no longer a matter of debate in the mind of this autism dad. The path to progress began under the Conservative government of Premier Bernard Lord and has taken some major leaps forward under the Liberal government of Premier Shawn Graham. It would be dishonest for me not to acknowledge what both leaders and their parties have done for New Brunswick's autistic children. Far from slamming these leaders and their parties I personally thank them for what they have done to help our children with autism spectrum disorders.

The story is different though when it comes to New Brunswick's autistic adults where all aspects of autistic life have been largely neglected or mishandled. While there are many pressing needs at the adult level the fact is we have long been in desperate need of an autism specific residential care system with properly trained personnel. Such a system would require autism specific residences in each region of the province with autism trained staff.

There is also a need for a central adult autism treatment and residential care facility in Fredericton. That need is proven by the fact that New Brunswick has sent its more severely affected autistic youths and adults to facilities outside the province including to Maine in the United States. We currently have autistic adults living in the psychiatric facility in Campbellton. I know of at least one instance in Saint John where an autistic adult was living on a hospital ward. In the past an autistic youth, charged with no crime, convicted of no crime, was housed on the grounds of a youth correctional facility in Miramichi while awaiting a spot at the Maine facility.

The talent reservoir for the establishment of an adult care centre already exists in Fredericton which is centrally located providing relatively convenient access compared to more remote locations. The Stan Cassidy Centre which provides pediatric tertiary care services is located in Fredericton on the grounds of the Chalmers Hospital. The main campus of the University of New Brunswick and its excellent, community involved, psychology centre is located in Fredericton. The UNB-CEL Autism Intervention Training program is located in Fredericton and has already indicated that it foresees no problem in developing a training program for adult care workers. All of these resources could be drawn on to supplement and support a modern, secure community based and autism specific residential care and treatment facility.

New Brunswick needs a publicly operated, not for profit, community based residential care system for autistic adults with facilities in each region and a central facility in Fredericton capable of providing in house residential care and treatment for the more severely autistic adults for whom the group homes have already been proven not to be a solution. The political leadership of this province has shown a conscience, substantial good will, and determination in helping autistic children. The time to help autistic adults is overdue though ... long overdue.

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As Autistic Population Ages Are We Ready?

The increase in the numbers of people with autism disorders is heading toward a new and critical phase - adulthood. Like everyone, as they enter adulthood, the needs of people with autism will change. The 1990's witnessed startling increases in autism disorder diagnoses which are now estimated by the CDC to affect 1 in 150 people and 1 in 98 males. There are those who offer their opinions that the incredible increases in autism diagnoses are purely reflective of changing diagnostic definitions and societal awareness but other than the diagnostic definition changes there is little solid evidence on which to base their opinions.

A change in definitions of autism disorders in the Diagnostic and Statistic Manual of he American in the early 90's, widely applied by the late 90's undoubtedly accounts for a significant part of that increase. It is possible also that increased awareness has contributed as well although that is not as clear. Awareness of many disorders and conditions has increased as a result of the rapidly changing technology of communication. Information is more easily and rapidly shared today then at any time in history. There is no obvious reason why greater awareness would increase autism diagnoses more than other neurological or behavioral disorders. In the meantime the boom in numbers of autistic persons is beginning to require that serious attention be paid to the needs for persons with autism in higher education, jobs and residential care for the more severely autistic.

Janet Zimmerman examines these issues in "As autistic children age, society faces challenges"on the Press-Enterprise, PE.com. The article mentions several ways in which college and job challenges are being addressed and speaks to the reality of residential care for severely autistic adults but provides little, other than a parents' hope, on how those serious residential challenges will be met:

"Brandon Woolsey is severely autistic and functions at a first-grade level. He needs one-on-one care, which is rare in the adult day care programs currently available, she said. He also wouldn't do well in a workshop setting because the noise and number of people would overwhelm him, Woolsey said.

But Brandon is good with his hands and does well outside, so Woolsey and her friend are hoping to start a ranch where Brandon and a few other autistic men could live and work in a structured environment tending a garden and horses.

"I said my son is always going to live with me, but the reality is he can't unless we outlive our kids," Woolsey said. "As he got older, I started thinking about what's fair to him as a young man. He deserves to be as independent as possible."

The highest functioning people with autism, with some personalized help, will be able to go to college, hold jobs and live independently.

Those with severe autism may need residential care, day programs and transportation -- all more costly to the system than children being cared for by their families."

Are we, as a society, ready to deal with the tremendous challenges facing us as our autistic population ages? In New Brunswick, unfortunately, we have not yet made a serious effort to meet those challenges.

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Take My Son - A Family's Painful Autism Reality

"Take my son".

- Teresa Abernathy

These are the words that families with severely autistic children know they may someday have to utter. They are the words that I know I will probably someday have to speak, as the father of a severely autistic 11 year old boy, although I do not know the context or the circumstances that will give rise to them. In A Painful Choice To Save A Family the Arizona Republic tells the story of Teresa Abernathy and her family including her husband her severely autistic son Colin and his siblings brother Connor and sister Erin.

The Abernathy's did all they could to help their son overcome his severe autism but finally the disruption in the lives of family members and the violence that Colin inflicted on his mother, the bruises and bite marks, were too much. Colin's mother made the gut wrenching decision to give up her son to the care of the state. As the article indicates it was the right decision for all, including Colin, who benefited from the care and attention he was able to receive. This is a story that all who truly want to understand the realities of severe autism should read. The Arizona Republic, and reporter John Faherty, deserve full credit for telling a story that will not be told by Dr. Gupta and CNN or featured in a Hollywood movie. The Abernathy family - Teresa, Jim, Connor and Erin, all deserve credit for their courage in telling their story, and Colin's story, to the world.

Government Was Warned - Now The Time To Pay $3.2 Million Autism Bill Has Already Arrived!

The autism world is buzzing today over a Glove and Mail article which discusses in a frank and straightfoward manner the societal costs, estimated at $3.2 million per person of caring for autistic adults. The costs are derived from the inability of many adults to work and care for themselves. These are some of the unpleasant realities that the rose coloured glasses brigade do not want discussed. But now government is being hit in the face with these realities. The Canadian Senate recently issued a report, a very flawed report, which warned that Canada would have to pay now or pay later for the costs of autism treatmnet and care. That part of the Senate Report at least was right if action is not taken to ensure that proper evidence based treatment for autism is not funded society ends up paying much more down the road.

It is not like government was not warned. In Canada the courageous parents who litigated the Connor Auton case started telling government over a decade ago that the financial burden to society down the road would be tremendous if early ABA intervention was not provided intensively right away and funded. Government chose to fight and resist all the way to the Supreme Court of Canada. Along the way government received unexpected help form such sources as Psychiatrist Laurent Mottron an alleged autism expert who publishes reports on dozens of autism cases a year, almost all involving high functioning autistics and Asperger's Persons, almost none involving the low functioning autistic persons who require such expensive intensive residential care and treatment as adults.

In New Brunswick parents were subjected initially to a different response from government. Here we were asked to wait dutifully while an Inter Departmental Committee of Health, Family and Education civil servants along with hand picked "stakeholder" representatives met to assess what services were available specifically for autism needs in New Brunswick. The report and its recommendations were submitted to government where it went unread by the lead Minister Elvy Robichaud for 10 months, by his own public admission. The report's recommendation were timid and only contained a recommendation for evidence based interventions because a local Fredericton activist group called FACE kicked up a fuss. It took another year after the reports release before the government committed on paper to fund pre-school interventions for autistic children. Only now are Teachers and Teachers Assistants being trained in New Brunswick at the excellent UNB-CEL Autism Intervention Training Program.

The cost of government foot dragging in New Brunswick and across Canada on autism issues is now becoming clearer. In New Brunswick residential care and treatment for autistic youths and adults is virtually non-existent. Essentially our more difficult cases are shipped out of province, sometimes out of Canada, to seek treatment. Residential care is essentially custodial care for many autistic youths and adults and they sometimes end up charged with assault when friction arises between untrained residential care workers and autistic residents.

Government was told this day was coming. But it is not down the road as the Senate indicates although the problem will undoubtedly get even bigger down the road. The future, the unpleasant future is now in New Brunswick and much of Canada for the substantial numbers of autistic adults living little more than a custodial existence; cared for by untrained staff and lacking in appropriate medical care.

"Autism a lifelong burden, study shows

Because few adults with the disorder can work, the economic costs continue

ANDRÉ PICARD

Each child diagnosed with autism will accrue about $3.2-million (U.S.) in medical and non-medical costs over his or her lifetime, according to a new study.

The most expensive components are lost productivity and adult care, not medical costs and behavioural therapies that so many parents crave for their children, the research shows.

"Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood," said Michael Ganz, an adjunct professor in the department of society, human development and health at Harvard University in Cambridge, Mass., and the lead author."

Harper Budgets $0 for Autistic Canadians

StatsCanada estimates that Canada's population will hit 32,950,734 by July 1, 2007. With the CDC figure of 1 in 150 persons having an autistic disorder there are approximately 219,672 autistic Canadians. Many autistic persons require expensive health, education and residential care services. For Autistic Canadians Prime Minister Harper's government set aside the grand sum of ...... $0

Some lesser politicians might have tried to fake it and pretend that they were concerned about Canada's autistic population. Stephen Harper, to his credit, does not try to pretend. He does not give a damn about your autistic loved one and he does not care who knows it. He does, at least, have the virtue about being honest about his disregard for autistic Canadians.

$O. Thank you so much Mr. Harper.

Jason Oldford Testifies Before the Canadian Senate Committee Studying Autism Funding In Canada

Jason Oldford is a person with autism who served on the Board of Directors of the Autism Society of New Brunswick for several years where he played a key role. On December 6, 2006 Jason Oldford testified before the Standing Senate Committee on Social Affairs, Science and Technology which was meeting to consider the inquiry on the issue of funding for the treatment of autism in Canada. Jason's testimony was recorded in Hansard:

"Jason Oldford, as an individual: I am honoured to address this committee. I was diagnosed with autism in 1974 when not much was known about it. I will tell you a bit about myself. I will not take long. I have quite a few things to say about funding for treatment.

I still have a few weaknesses with my autism. Eye contact is one of them. My social skills are not perfect. They are not up there with a typical person either.

On the plus side, my language developed normally. I was able to read by the age of three. I know trivial matters that other people would not dream of knowing. I tend to interpret things literally sometimes.

I have two university degrees and I attended public school with all the other children. I was not put in a special education class.

The reason I accepted the invitation to appear before this committee was to tell you what I would like to see. I would like to see severely autistic people become more like me, or more like others like me, to become more high-functioning. It can happen. I believe it.

There are about 100,000 people affected by some form of autism across Canada. When their parents received the diagnosis, immediately the research started looking for a treatment. They came across this ABA, applied behavioural analysis. It is the only evidence-based treatment that is available. The only drawback is that it is expensive. They cannot afford it. For that reason, they go to the respective provincial governments and try to get them to do it. It has not worked out the way they planned.

Autism is a life-long disorder. There is no cure. There are several treatments. Only one is evidence-based. There is no cure.

The key is early intervention, early diagnosis, and early detection. If treatment is started immediately upon diagnosis, or soon thereafter, within three or four years a child could enter school and perhaps not need ABA. He could go on, get a high school diploma, get university degrees, and be able to contribute to society.

I was pleased yesterday when I heard that the House of Commons had passed motion M-172, for a national autism strategy. I turned 36 yesterday. That news would rank up there with one of the best birthday presents I could receive.

The provinces worry about resources and having to live within their means. I understand the provinces have to live within their means. That is where the federal government comes in and helps out. If the federal and provincial governments put their heads together and work this thing out, a solution can be reached in the autism treatment situation we have in this country, in every province and territory.

There is a concern about having autism treatment funded under medicare. I am in favour of that. Ultimately, it is up to the provinces and territories. Each one has its respective medicare plan. Should any provinces decide not to fund this treatment under medicare, not only do I think they are making a mistake, I think they should find some place in their respective budgets to fund that treatment.

You also come to the issue of education. We need therapists certified in ABA. We need people in our schools trained to deliver ABA to autistic students. We need enough so that there are no waiting lists.

I have heard stories about people who have tried to get into speech and occupational therapy; some have told me were on a waiting list for months or years. Others are still on waiting lists. That is a problem that needs to be addressed and solved.

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. It is derived from 52 weeks a year at 40 hours a week at $30 an hour.

Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in. I am amazed they can cover the treatment they need for their child and still pay the bills. How they do it, I do not know. Somehow, they get it done.

Early intervention, detection and diagnosis, can lead the way to a child's achieving his or her full potential, to become productive in society. If Ottawa and the provinces work together, we could have a solution.

As was mentioned, ABA is not perfect. According to studies, only 47 per cent of those tested were indistinguishable, but 47 per cent is a lot better than zero.

If provinces and the territories and the federal government all work together on this, it will lead to solutions. None of the world's problems was ever solved by arguing; none of the world's problems was ever solved by doing nothing; none of the world's problems was ever solved by worrying.

If Ottawa can get together with the provinces and territories and come away with a solution — and I am confident that they can; I am confident that they can accomplish this — just think of how many children will not be in group homes or institutions. Think of how many children will be able to contribute to society if they get this treatment. With the provinces and Ottawa working together, I know that can happen.

..

Mr. Oldford: Yes, I was recommending federal leadership with the federal government and the provinces agreeing on something to fund evidence-based treatments. The bill that was passed yesterday talked about evidence-based standards. That is good. It talks about developing innovative funding methods, and that is good too. I read an explanation that said that that means that the provinces, territories and federal government discuss how to fund evidence-based treatment.

The only evidence-based treatment that currently exists is ABA, but there may be more to come. Judging by what I have read, I think that sooner rather than later ABA will have company in the evidence-based treatments category. If any other evidence-based treatments were to come up I would support those, too, especially if they cost less than ABA does.

The governments must agree on how to fund a treatment that is proven to be scientifically validated and evidence-based.

...

Mr. Oldford: I agree with every word that Ms. Harrisson. I do not have any statistics on the number of adults that are autistic, that are in group homes or that are in institutions. I would say that a small number of autistic adults are in group homes or in institutions. I could be wrong, but I do not think there are that many.

When you read about autism, you read about autistic children. Autism is diagnosed during childhood. Some of the higher functioning types of autism can be diagnosed in adolescence or even adulthood.

Adults still need treatment. In the last session one of the things they discussed was age restrictions. I do not think there is any need to have them; they are discriminatory. Once a child turns five or six years old and still needs treatment, they should not be cut off. They should still get the treatment. If someone is diagnosed as an adult and needs treatment, they should get the treatment.

Getting back to housing, as I mentioned earlier, whoever works with autistic people in group homes and institutions has to have the proper training and has to know how to deal with autism. If they do not, it is not a good situation. There is also a need for proper housing for people with autism, not just in my home province of New Brunswick, but in every province across Canada.

...

The Chairman: Do most people with ASD live at home with parents or do many live on their own?

Mr. Oldford: I would say a good number of them live with their parents. I lived with my parents until this past July when my brother and I bought a house. I would think that most autistic people do live at home.

That brings us to another issue: employment. When they become adults, most people with autism are either unemployed or underemployed, which is the reason they live with their parents or in group homes. They do not make enough money to be self-sufficient. It is a bad situation. That should be discussed, too, when they discuss the treatment issue.

..

Senator Munson: There seem to be more and more diagnoses of autism; one in 166 is the new figure. With these diagnoses, we either pay now or later, and pay big later. We will have the statistics on homes like this if this keeps up this way. Do you agree?

Mr. Oldford: I would have to agree with that. I have heard people fighting for treatment telling the governments that, as you said, Senator Munson, the governments can pay now or pay later. We understand this treatment is expensive, but if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

..

Mr. Oldford: We do need more autism awareness. As Mr. Hooker has mentioned, many people look at us as low-functioning people because they view autism that way. They see it on television and read about it in the papers. They think, "Boy, I am glad I do not have a child like that." Even in the most severe cases, autism is not the end of the world.

One way to promote awareness is through columns in newspapers and television appearances, as Mr. Hooker said. I would add that perhaps more people with autism spectrum disorder could be invited to speak at conferences. One of the measures that the government announced last week in its autism strategy was that there would be a national autism symposium next year. At that national symposium I would like nothing better than to see people with autism being invited to speak.

...

Mr. Oldford: Education is required for teachers and employers. However, as for team work, people with autism prefer to work alone. Sometimes when you put people with autism into a team setting they can become a bit temperamental and a bit hot under the collar. It could be because the other team members do not agree with the suggestions, or for other reasons. On the school front, there have been stories about even the most high-functioning students becoming aggressive. It is not their nature but it happens when they are frustrated at not being able to communicate their feelings appropriately. In many cases, teachers will send those students to the principal's office, put them on detention, suspend them from school or send them home for the day, which is an inconvenience these days for parents because in most families, both parents work outside the home.

Employer and teacher education is needed when it comes to autism and how to deal with it. They need to know how to deal with situations that arise that could be caused by the autism.

...

Mr. Oldford: Sometimes I do find myself in a situation of the type you mentioned. More often than not, it is advising parents of autistic children. Basically, all I give them is words of encouragement. I am in no position to tell them how to raise their children.

There is quite a large autistic population, even in a small province like New Brunswick. The only advice I give them is just do not give up the fight.