I had just finished reading Kristina Chew’s piece, When a Real Crisis Hits, when this news item caught my attention. Jim Carrey is setting up a $50 million trust fund for his partner, Jenny McCarthy and her autistic son, Evan. Carrey’s daughter will inherit the rest of his $200 million dollar fortune.
While I am pleased that Evan is one autistic child who will not be badly affected by the credit crunch I am a little confused. Last year all the news was that Jenny had recovered her son from autism. Now he is described as still being autistic. Last year Jenny described him as recovered from autism but still needing treatment for seizures. The year before she told People Magazine that Evan’s seizures were not epilepsy but a part of his autism.
This would not matter if McCarthy was just another celebrity mother making contradictory statements about bringing up her child. But she is also an advocate for the belief that vaccines cause autism and her celebrity status gives her ready access to the media. Together with Carrey she is on the board of the anti vaccine organization, Generation Rescue and her supporters are trying to drum up support for a meeting with Barack Obama’s team prior to his inauguration. It looks like Obama’s transition team have already done autism and no anti-vaccine advocates were invited. But the Autism Self Advocacy Network were invited, which is good news for the autism community.
January 4th, 2009
Posted by
Mike |
autism advocacy, politics |
2 comments
2009 promises to be an important year for us all. The state of the world economy is going to exert pressure on publicly funded services as well as those supported by charities and other not for profit organizations. If we are lucky we will not see a major reduction in autism specific services. But we cannot reasonably expect to see an expansion. Most autistic people and their families will continue to rely on generic services and these too will be subject to downward pressure on their budgets.
One low cost option that can make an enormous difference is the move to make generic services autism friendly. If service providers are made aware of the kind of accommodations that can make life easier for autistic people and their families and their staff have some basic autism awareness training it can make a world of difference.
With emergency services like fire, police and ambulance this has long been the case. Dennis Debbaudt has pioneered the provision of training for first responders. The National Autistic Society is supporting similar schemes in the UK. The appointment of a person with specific responsibility for autism within the Department of Health and the publication of new social care guidelines are welcome initiatives.
Public perceptions of autism are also important. Doom laden campaigns with the message that autism is a mysterious kidnapper of children are not only misleading but also create barriers. If we cannot understand something, or are told that it is beyond our understanding we are more likely to turn away. Scare stories about the cost to society of the “autism epidemic” are also likely to backfire. People are already scared of losing their jobs, their homes, their life savings. Trying to scare them into doing something about autism is a dangerous strategy at the best of times and these are most definitely not the best of times.
Although it is not without its critics, the ongoing NAS campaign to Think Differently About Autism has tried to avoid these pitfalls by being honest about the problems that can come with an autistic spectrum disorder and being positive about what people can do to help. Now Change.org an American social enterprise site promises to do something similar with its new autism blog.
What I really like about this blog is the decision to appoint two editors. Kristina Chew is the mother of a severely autistic child. Dora Raymaker is an autistic adult. She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network’s Board of Directors.
In one of her entries Kristina charts her journey through autism from being a dedicated seeker of cures and recovery to her present situation of accepting her son’s autism. Here is a sample.
Once upon a time, I tried to recover my son from autism, through educational therapies and biomedical treatments. As he’s gotten older, I’ve come to think that focusing on recovery distracted me from truly helping Charlie and truly understanding Charlie. It’s Charlie’s education that is our main priority as we prepare him for his future, and especially an education that takes into account Charlie’s learning style, his tremendous struggles in many areas, and his strengths.
In one of her entries about a talented artist with autism Dora writes
How can we change to world so that instead of just aspiring to get Bula “a job working at a local gallery, cleaning and taking care of the art supplies,” we instead aspire to give Bula a chance to succeed as a working artist doing what he loves, and being treated with the respect that anyone with his talents deserves?
This is definitely one for the blog roll. Read and enjoy.
January 4th, 2009
Posted by
Mike |
autism acceptance, autism advocacy |
4 comments
