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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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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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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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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Fredericton Flood 2008 - May 2

Pics from downtown Fredericton, May 2, 2008, the day the water crested.

Autism, Conor and the Fredericton Flood 2008

Fredericton has been hit by some serious flooding. The pictures above are taken in Nashwaaksis, the area where we live in Fredericton. We have done fine. Lots of water coming into the basement but nothing we couldn't handle (so far) with buckets, a Shop Vac, a sump pump and some sleep deprivation. With a disrupted routine and lots of commotion, which are often difficult for children with Autism, we were concerned about how Conor would react. We needn't have worried. Dad has been home because of the flood and I have hung out with my buddy when possible. Which is lots of fun for me too. With everything under control with a new sump pump Dad and Conor went walking again to one of Conor's favorite spots, the Circle Place, as we call the Lawrence Amphitheatre. Today though we arrived to find the Circle Place almost flooded over. Conor surveyed the situation and decided to have fun anyway!

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Autistic Children "Rotting On The Vine" In Ontario - Why Not Consider "the New Brunswick Autism Model"?

In Wait list for autism therapy growing, critics charge the Star.com reports that "the wait list of autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, reached 1,148 on March 31, up from 985 last year." NDP critics argue that the government is moving at a slow, even glacial, pace resulting in many children "rotting on the vine" in the words of NDP critic Andrea Horwath who was also quoting parents she had met at a town hall meeting. The article describes spending increases by the McGuinty government but does not really describe a plan for getting children off the autism wait lists.

When I was in Ontario last week, as part of the Medicare for Autism NOW! campaign, I had the privilege of meeting some Ontario parents and discussing autism realities in Ontario. I heard of autistic children facing bureaucratic obstacles, waiting on lists for treatment only to "age out" before receiving treatment; or after just getting started. I mentioned the New Brunswick autism model as one that Ontario might want to consider.

In New Brunswick autism services are far from perfect but we have come far with the effort of determined parents, a sympathetic public and ... responsive political leaders. We have also been fortunate that political leaders of both major political parties in New Brunswick, aside from some exceptions, have tended to be genuine in their desire to help autistic children. So what is "the New Brunswick autism service model" and why is it working? (Yes, there are problems and the need to continually improve but generally we are much better off than Ontario.)

The key to "the New Brunswick autism model" is the University of New Brunswick Autism Intervention Training program offered through UNB's College of Extended Learning. The program provides training for autism support workers and clinical supervisors to provide evidence based interventions to children with autism during the pre-school years. Those interventions are provided by agencies which must be approved by the Department of Social Development and must be accountable for the quality of the services provided. The UNB-CEL AIT has also begun providing similar training to teacher/education aides and resource teachers. We are no longer debating whether ABA can be provided in New Brunswick schools as they are in Ontario. Here it has been happening. My son, Conor, has received ABA based instruction for the past 4 years. The teacher aides providing the instruction in school have been trained at UNB-CEL Autism Intervention Training program. While Discrete Trial Training is used for academic instruction, more general ABA principles are also employed in settings such as the school gym.

The UNB-CEL AIT program began as a response to a call for tenders by the Department of Family and Community Services (now the Department of Social Development) to provide pre-school autism intervention services in New Brunswick. It began, literally, at a meeting of the proposed UNB Autism Centre committee of which I was a member. Asked whether the College of Extended Learning could be of assistance Anne Higgins director of professional development at UNB-CEL listed the administrative milestones that would have to be met. Then, like few people I have ever seen, she and her team at UNB-CEL got the things done to meet those targets. The curriculum and instruction quality were overseen and assured by Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell. With other Autism Society and parent reps on the committee we saw the program established from the outset and have complete confidence in the quality and integrity of the program. The program is continually evolving with input from the Departments of Social Development and Education and from the autism community.

A couple of years ago I was offered employment in the Toronto area with a labour organization whose leadership I had already worked with. It was really a dream job but I turned it down. In part because I grew up attending as many as three schools in one year as an "army brat" and my two sons had both had the opportunity to attend the same grade school and middle school without moving from place to place. But the biggest reason for not wanting to move was the fact that Conor was receiving ABA based school instruction from an aide trained at UNB-CEL using programs designed and overseen by a teacher who had received the Clinical Supervisor training at UNB-CEL. He has now had almost 4 years of such education and I am glad, for his sake, I decided to stay in New Brunswick.

I don't know if the Ontario bureaucrats would consider developing the New Brunswick model in Ontario for pre-school and school age children. Nor do I know if parents would want that. In Ontario they seem hung up on the IBI versus ABA labels a distinction without a real difference. But if autistic children are "rotting on the vine" in Ontario they might want to at least take a look at what we have done right here in New Brunswick.

If the people in Ontario are interested in what has happened in New Brunswick they might want to consider the CAUCE 2008 sessions, session five, on May 30 at the University of Western Ontario. Anne Higgins and Sheila Burt from UNB-CEL Autism Intervention Training will be participating and speaking about the pivotal role of UNB-CEL in providing multi-partnered, systematized autism intervention services.

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RDI Is NOT an Evidence Based Intervention

In New Brunswick several years ago there was little in the way of autism specific services. An interdepartmental committee comprised of representatives of the Departments of Family and Community Services (Now called Social Development), Education and Health, the "IDC", some autism "community" representatives and some professionals met for 18 months before issuing a report which stated that obvious fact. The failure of the IDC Committee, publicly at least, to discuss the need for autism treatments and to identify treatments that should be offered to autistic children in New Brunswick, is what prompted me to become publicly involved in autism advocacy in New Brunswick. One positive development that came out of the IDC review though was a commitment by the New Brunswick government to evidence based treatments.

That commitment to evidence based interventions is of critical importance for New Brunswick's autistic children and youth and has been largely honored since then by the Province of New Brunswick. There is, however, despite the existence of a high quality autism intervention training program at UNB, persistent pressure from some pockets, particularly in the Saint John and St. Andrews areas, to employ non-evidence based interventions with autistic pre-schoolers and students. In Saint John in particular, the "anything but ABA" sentiments of some influential people in the autism "community" have resulted in negative and inaccurate perceptions of ABA amongst some parents busy with the demands of child raising, dealing with their children's autism and, like all of us, struggling to get by. At the same time the "anything but ABA" group tends to promote any intervention with a nice sounding name that looks fun on its face, anything as long as it is not ABA.

The intervention which is currently in vogue amongst New Brunswick's "anything but ABA" lobby is RDI. RDI sounds so nice - Relationship Development Intervention. After all how can one possibly be against "Relationship Development"? And it is an "Intervention"! It sounds so professional it must be evidence based right? Well no, not really.

One of the leading reviews of the evidence basis of the effectiveness of autism interventions is the MADSEC Autism Task Force Report which reviewed the professional literature in 1999-2000 and concluded at pages 60-61:

Based upon a thorough examination of numerous methodologies considered as interventions
for children with autism, the MADSEC Autism Task Force has characterized the interventions
reviewed as follows:

• Substantiated as effective, based upon the scope and quality of research:
Applied behavior analysis. In addition, applied behavior analysis’ evaluative procedures are effective not only with behaviorally-based interventions, but also for the systematic
evaluation of the efficacy of any intervention intended to affect individual learning and
behavior. ABA’s emphasis on functional assessment and positive behavioral support will
help meet heightened standards of IDEA ‘97. Its emphasis on measurable goals and reliable
data collection will substantiate the child’s progress in the event of due process.

• Shows promise, but is not yet objectively substantiated as effective for individuals with autism using controlled studies and subject to the rigors of good science:
Auditory Integration Training, The Miller Method, Sensory Integration, and TEACCH.

• Repeatedly subjected to the rigors of science, which leads numerous researchers to conclude the intervention is not effective, may be harmful, or may lead to unintended consequences:
Facilitated Communication.

• Not scientifically evaluated:
Greenspan’s DIR/”Floor Time,” Son-Rise.

There is no mention of RDI in the 1999-2000 MADSEC review but RDI has emerged more prominently since then in autism workshops offered in New Brunswick and elsewhere and there has been another important and more recent review of the scientific studies of the effectiveness of autism interventions - the American Academy of Pediatrics report Management of Children With Autism Spectrum Disorders published online October 29, 2007. The AAP concluded, at page 1165m with respect to the evidence basis of RDI that:

RDI focuses on activities that elicit interactive behaviors with the goal of engaging the child in a social relationship so that he or she discovers the value of positive interpersonal activity and becomes more motivated to learn the skills necessary to sustain these relationships.56 Some reviewers have praised the face validity of this model, which targets the core impairment
in social reciprocity. However, the evidence of efficacy of RDI is anecdotal; published empirical scientific research is lacking at this time.

(Bold highlighting added for emphasis -HLD)

If a reader wants to understand how weak the evidence in support of RDI effectiveness is, as summarized by the AAP above, they can compare it to the AAP summary, at page 1164, of the evidence in support of effectiveness of ABA:

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have
been significantly better than those of children in control groups.31–40

When the New Brunswick government committed to evidence based approaches to treating and educating autistic children it adopted a very sound policy which has helped many autistic children. Even in Saint John where the "anything but ABA" sentiment has been strongest, autistic children receive evidence based intervention at the Stepping Stones autism agency. But why is it important to provide evidence based interventions?

In Children with autism deserve evidence-based intervention, The evidence for behavioural therapy, MJA 2003; 178 (9): 424-425, Jennifer J Couper and Amanda J Sampson, reviewed some of the evidence in support of the efficacy of behavioral interventions for autism. The authors stressed the importance of an evidence based approach to autism interventions:

While ineffective therapies may be harmless, they waste parents' money and the child's valuable therapy time. Furthermore, the delay in implementing effective treatment may compromise the child's outcome.

The choice of autism interventions offered by New Brunswick autism agencies should be determined by the evidence basis in support of their effectiveness. Failure to provide evidence based effective autism interventions may compromise the outcome for children with autism disorders in New Brunswick.

Autistic children deserve evidence based intervention.

At this time RDI does not meet that standard.

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Autism As Disability and Disorder - NOT Deviance

Leave it to Estee Klar-Wolfond host of "The Joy of Autism" to get it wrong again. This self appointed expert on autism actually celebrates autism - a disorder which impairs and restricts the lives of many with Autistic Disorder. And her absurd views of autism are reflected in her response to the speech by Reverend Jeremiah Wright to the NAACP.

In my son's case he can not be left unattended at any time. He can not be left to wander to the end of our neighborhood street unaccompanied without risking his life. Yet this person lectures parents like me that we should find joy in our children's disability. I can not hide my lack of respect for her point of view. It is sheer and utter nonsense and I will not pretend otherwise. Whenever I read of an autistic child gone missing, sometimes thankfully returned to safety, sometimes not, I think of this person's perverse ideology which celebrates disability as something joyful. I am not surprised Estee Klar-Wolfond would seize on Rev. Wright's remarks as she has in her comment titled "Difference Is Not Deviance". Here is a big tip for Ms Klar-Wolfond. I know of no single person who accuses autistic people of being deviants. Not one.

Ms Klar-Wolfond takes issue with other parents who describe their children as ill. Like many who subscribe to the Neurodiversity Ideology that worships autism as a culture or way of life Ms Klar-Wolfond takes exception to those who describe autistic disorder as a ... disorder, a disability, or a disease. What Ms Klar-Wolfond and other ND adherents ignore are the hard realities of autistic children, like my son, who can not walk to the end of our neighborhood street alone for fear of serious injury or death. Nor do they talk much about the autistic persons who hurt themselves even causing brain injury or starve themselves. It is easy to see autism as a joy as Ms Klar-Wolfond does when you simply ignore the unpleasant realities lived by some persons with autism and hang out on the internet with some high functioning persons who write great essays and appear before courts and parliamentary bodies.

Here is another little tip for Ms K-W and the rest of the ND ideologues. If someone is called autistic it is because they have received a medical diagnosis that they have one of the Pervasive Developmental Disorders. They would not have acquired such a diagnosis if everything was joy and bliss in their lives. They acquire such diagnoses, most often as children, because of serious language delay and other serious developmental and behavioral problems. Joy? Not at all. Deviance? No, not that either. Autism is a disorder and a disability and it is also called a disease by medical professionals whose opinions were sought by parents in respect of their children.

Ms Klar-Wolfond is "happy to announce" that she is "a new graduate student of Critical Disability Studies at York University". Congratulations to Ms Klar-Wolfond on acquiring entrance to another university degree granting program. Hopefully the learned professors who mentor Ms Klar-Wolfond will understand that race and religion may not be the most apt comparisons for disorders and disabilities. People of different races and religions suffer when people create obstacles and hardships for them because of their differences. Their races and religions impose no restrictions or impairments on their lives.

People with disabilities and disorders suffer when the physical world, genetic and environmental, create obstacles and hardships for them. Their own disorders and disabilities do in fact impose restrictions and impairments on their lives. Therein lie the "differences" between race and religion on the one hand and disability and disorder on the other. Hopefully the professors and mentors at the York University Critical Disabilities graduate studies program understand these distinctions even if Ms Klar-Wolfond does not.

My son is diagnosed as having Autistic Disorder, assessed with profound developmental delays. He has a disorder, a disability. He is not thereby deviant. And it is silly to suggest that anyone in the real world equates autism with deviance.

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Autism Fun - Conor and Dad at the Circle Place

After a long tough winter it is no problem getting Conor outdoors for a walk, especially if we go to "the circle place", the Lawrence Amphitheatre in Nashwaaksis. The Saint John River has flooded this spring and we have to take a different route. Once there Conor loves to walk around the rings and circle at "the circle place". After Conor relaxes with a watermelon treat.

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Autism & Stimming, 2000+ Views for Conor Stimming Video

"Conor Counting and Stimming", Conor's Youtube video showing him stimming while counting from 1 to 100, has now received more than 2000 views (2,050 at present, without CNN promotion).

Conor has Autistic Disorder with profound developmental delays. He will not be attending Simon's Rock College for gifted youths. And he will not be writing elaborate screenplays explaining how his stimming is a way of communicating with the physical world around him. His language skills are not that good. As far as I can tell, Conor stims to relieve tension and frustration. He enjoys stimming and we do not try to eliminate stimming behavior. But it is not a "language" in any sense of that word. His favorite stim object is the straw which he manipulates in this video.

Conor's stimming is not dramatic, it is not fancy but ... it is real. It is what he does ... whether there is a camera trained on him or not.

2,050 views. If some of those viewers are new to autism then I am glad that they had the opportunity to see autistic stimming, Conor style. No drama, no profound philosophy, not very fancy but very real.

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Four Teens Fully Recover from Autism Through ABA

Press Conference and World Premiere Movie.

Los Angeles, CA, April 25, 2008 --(PR.com)-- Four families who were told to institutionalize their autistic children years ago will be honored during the screening of a documentary about their journey to recovery. The four children featured in the documentary were all diagnosed with autism between the ages of 3 and 5, and their parents were told that the children would never be able to have meaningful relationships or even communicate with others. Today, they are teenagers who, through a treatment program with the Center for Autism & Related Disorders, have overcome the bleak prognosis to become active, successful individuals.

Ruffin, Janna, Nick and Brett participate in mainstreamed high school settings, and are exceptional students. They are involved with friends, hobbies and sports. By anyone’s standard, they are typical teenagers. All four children had a formal removal of their diagnosis, exhibiting scores in the normal range in intelligence, language and adaptive skills after treatment.

Their story is told by Dr. Doreen Granpeesheh, founder of the Center for Autism and Related Disorders, Inc. (CARD), the organization responsible for their treatment. She and her staff developed and administered treatment programs for each of the children using Applied Behavior Analysis techniques and documented the children’s’ stories and progress.

Recovered: Journeys Through the Autism Spectrum and Back is a true and inspiring story of four families who were given no hope, one organization which refused to give up, and four brave children who overcame the odds to achieve success. The documentary includes pre and post treatment interviews and therapy sessions.

“Many people don’t believe it is possible to recover from Autism. Our purpose in developing this film is to show that there is reason for hope. These children can learn to communicate, socialize, and play. I wanted to make sure families hear and see that,” Granpeesheh said.

Press Conference & Star Studded Premiere
7:15pm – Friday, April 25, 2008
Pacific Design Center - Lobby - Silver Screen Theater – 2nd Floor
8687 Melrose Avenue – West Hollywood, CA

Available for interviews:
• Four recovered teenagers (3 from Los Angles Area; one from Midwest) + many, many more recovered children
• The therapists who worked with the children
• Dr. Doreen Granpeesheh
• World acclaimed psychologist, Dr. Ivar Lovaas
• Lou Diamond Phillips, Director/Actor/Autism Activist

Contact Information Center for Autism and Related Disorders, Inc
Daphne Plu
818-345-2345 X 270
d.plump@centerforautism.com
www.recoveredautism.com

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Study Finds Mercury Autism Link

The rancorous debates about a possible mercury autism link usually focus on vaccines and the mercury component of some vaccine preservatives. Mercury originating elsewhere in the environment is rarely mentioned as a possible causal factor for autism even though mercury is a powerful neurotoxin especiallydangerous for fetuses, babies and toddlers. A recent study by a team of San Antonio scientists may change those dynamics substantially as reported on MySa.com. The San Antonio scientists have found a statistically significant correlation between autism rates in Texas school districts and their proximity to power plants or other large industrial sources of mercury.

The team looked at mercury released from 39 coal-fired power plants and 56 industrial plants around the state and examined the autism rates from 1,040 school districts in Texas.

Researchers found that for every 1,000 pounds of mercury released into the environment, there was an overall 2.6 percent increase in autism rates in Texas school districts.

That rate jumped to 3.7 percent when looking at emissions from power plants alone. But it fell by 1 to 2 percent for every 10 miles from the source.

The study is published in the journal Health & Place.

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Autism's Fallacious Grinker Assumptions

1. Non-environmental factors explain some of the exponential increases in rates of autism diagnoses.

2a. Therefore non-environmental factors are responsible for the entire increase in autism diagnoses.

and

2b. Environmental factors do not and have never caused autism alone or in combination with other factors.

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