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".

autism

Read more »

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.

autism

• 

Read more »

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.

autism

Read more »

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.

Read more »