Friday, May 09, 2008

Autism Hero Stefan Marinoiu's Hunger Strike For Autism Now

There are many ways parents and other concerned citizens can advocate for health, treatment, education and residential services for autistic children and adults. Some join organizations, hold awareness meetings with government, business and the public, write letters to the editor and so on. Stefan Marinoiu of Toronto, who I met a couple of weeks ago during the recent Medicare for Autism Campaign NOW! visit to Toronto and Oakville, goes much further. Stefan has put it all on the line advocating for autism. And he is doing it again, right now. Stefan began a hunger strike for autism on May 5 outside Queen's Park in Toronto.


This winter Stefan walked for 11 days, over more than 200 miles, from Toronto to Ottawa, in the middle of a tough Canadian winter, blizzards and all, in an effort to meet Alleged Health Minister Tony Clement to ask the Canadian government to do something to help autistic people in Canada. He was traveling on foot with no warm trailer to retire to at the end of the day or if things got rough. With his winter autism trek Stefan literally put his life on the line advocating for autism change. Stefan got a 15 minute meeting with Minister Clement who said very little of substance. While the alleged federal Health Minister was not moved by Stefan's efforts parents of autistic loved ones across Canada were very moved. It was a privilege for me to meet Stefan in Toronto and Oakville. He is a genuine and compassionate person and has a great family.

Stefan's daughter Lia has started a Facebook group HUNGERSTRIKE for AUTISM NOW on which you will find updates and information about Stefan's Hunger Strike for Autism Now. As Lia points out her father is a type-2 diabetic. His hunger strike again poses serious risks to Stefan's health. Stefan's willingness to put it on the line for autism is a reflection of his tremendous personal courage and his strong convictions. It also reflects his frustration with the lack of help for autistic people like his son, 15 year old Simon, as shown in this Toronto Sun video:




I hope that Stefan takes care of himself as he tries again to impress upon government and public decision makers the impact that autism is having on autistic persons and their families and the need to take serious action to address Canada's autism crisis.

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Tuesday, May 06, 2008

Buddies Forever




Parents advocating for our autistic children are occasionally lectured and told that we must stop trying to "change" our children. We must learn to accept our children's autism and find joy - in their autism. I do not find joy in Conor's autistic disorder which presents him with serious challenges now and for the future. But I find great joy and comfort in Conor himself. And it takes no effort on my part. Conor is a happy and loving boy. And lots of fun.

During the Fredericton Flood, now receding, sleep was hard to come by as we stayed on top of the basement flooding wth sump pump, shop vac and buckets. Above Dad tries to get some rest on the couch. Conor, stimmer straw and all, decides to pay a visit.

Buddies forever.

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Monday, May 05, 2008

Autism Causation - Back to Bettelheim?

A recent study of mental illnesses amongst parents of autistic children provides some ominous echos of Bruno Bettelheim. The study, “Parental psychiatric disorders associated with autism spectrum disorders in the offspring,” appears in the May 5, 2008, issue of the journal Pediatrics. The authors gathered data from Swedish medical and hospital registers of children with autism diagnoses before 10 years of age and matched with a control population. Parent diagnoses were based on an inpatient hospital diagnostic evaluation and included schizophrenia, other nonaffective psychoses, affective disorders, neurotic and personality disorders and other nonpsychotic disorders, alcohol and drug addiction and abuse, and autism.

The study found that "for both parents, schizophrenia was associated with autism. For other disorders, such as depression and nonpsychotic personality disorders, the positive association between psychiatric disorders and childhood autism was found only for maternal disorders, not for paternal disorders."

The authors concluded that the study results results "support the hypothesis that there is a familial predisposition, perhaps genetic, that presents differently in the parent than in the child and probably requires a constellation of other genetic or environmental factors for expression."

The authors of the study themselves note a number of study design limitations but it should be interesting to see the reaction to the authors' conclusions. In pointing to a connection between autism and parental mental issues, particularly the association between autism and maternal depression and nonpsychotic personality disorders, the authors appear to be retracing the steps taken by Bruno Bettelheim whose "refrigerator mothers" theories of autism causality caused so much harm to families with autistic children. Hopefully this study and the conclusions arising therefrom, will be given as much rigorous study and discussion as others pointing to possible causes of autism.

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Sunday, May 04, 2008

Autism Hero - Florida House Speaker Marco Rubio


Florida House Speaker Rep. Marco Rubio

"If this issue is about anything else, anything else -- taxes, anything -- I would tell you: 'Don't do it. Let's give it back and do it right and get it completely right.' But it has to do with children and with families. I think we need to take a step forward.''

- Florida House Speaker Rep. Marco Rubio


In the above quote Florida House Speaker Rep. Marco Rubio explained why he recommended against further debate on the Steven A. Geller Autism Coverage Act requiring all private insurance groups in Florida to cover autism medical aid. As reported by UPI the proposed Act could have been slowed by further debate concerning coverage of other disabilities.

It is refreshing to see a political leader who understands the urgency, and the need, to take action to provide medical coverage for autism.

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