Friday, November 28, 2008

Tina Fougere and the Canadian National Autism Foundation Do Not Speak For My Autistic Son

Stoney Creek News reports that the Canadian "National" Autism Foundation was honored for its financial contribution to autism research at the Hamilton Health Sciences Foundation Donor Recognition Event last month. The CNAF was honored for a contribution of $12,000 to autism research which will fund research by noted autism researcher Dr. Peter Szatmari director of the Offord Centre for Child Studies.

All well and good. In the course of the event though Tina Fougere, CNAF Founder and President, and herself the mother of an autistic child stated that:

“It’s not so much about finding a cure –because people with autism, a lot of them don’t want to be cured because then you’re taking that identity away from them – it’s about finding out why autism has come to be and why now it’s becoming so predominant,” she said. “It doesn’t matter who you meet, you know somebody that has autism. Back in 1998 to 2000, it was one in 25,000; now, it’s one in 150, so that tells you how much it’s grown.”

In fact there are autistic people who would like to be cured. And there are many parents who desperately seek cures for their autistic children. The anti-autism cure ideology is promoted by SOME high functioning autistic persons and SOME persons with Aspergers.

There are many autistic persons who do not enjoy the intellectual and communication gifts of the anti-cure autistic leadership. There are autistic persons who will live their adult lives dependent upon the care of others, without jobs, families or even the ability to walk about safely in their communities without risk of harm, even fatal harm, to themselves.

If Ms Fougere followed autism news at all she would know that there are regular accounts of autistic children going missing. Sometimes they end well as they did yesteday in New Orleans. Sometimes they do not.

Ms Fougere should also understand that some autistic children require tertiary level rehabilitation services because of severe self injurious behavior like brain injury resulting from severe head banging, self inflicted bite wounds, self starvation and so on. For some families as severely autistic children grow up they become too much for aging parents to care for and they are given over to the care of the state. For many autistic persons and their families autism research, contrary to Ms Fougere's ill considered remarks, is about finding a cure for a serious neurological disorder.

My son has profound developmental "delays" associated with his Autistic Disorder diagnosis. He is a great joy and blessing in my life. I love him with every ounce of my being. But he can not be left unattended to wander away on City streets. Today he can be overwhelmed by busy shopping mall or mainstream classroom environments to the extent that he hurts himself with biting or hitting. His life prospects after I can no longer care for him will be those of residential care by strangers.

Ms Fougere and the Canadian "National" Autism Foundation do not speak for my son when they say that autism research is not, or should not, be about finding a cure. This "National" Foundation which I have never heard of in this part of Canada did not consult my son or me before offering their anti-autism cure opinions.

If an effective, safe, cure became available I would want it for my son, so that he could live as independent, full, safe and rewarding a life as possible. He is unable to offer an opinion on the subject but I speak for him as his father and caregiver. Tina Fougere, and the Canadian "National" Autism Foundation do not.




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7 comments:

Anonymous said...

Perhaps if you paid more attention to the fact that nobody knows anything about autistic people other than autistic people themselves, you'd understand the rule "NOTHING ABOUT US WITHOUT US". That means you don't give the parent of a paraplegic more say in that person's life just because the paraplegic can't wipe his own ass. Similarly, you don't dictate policy about autistic people without consulting autistic people. Autism Speaks does not speak for us, and neither do you.

Autism Reality NB said...

I agree with you Anonymous.I do not speak for YOU.

I speak for my son who you do not speak for. Despite your pretence of doing so.

When you use the expression nothing about US wihout US I hope you are not including my son in the "US" group. Your ability to understand, compose and send this internet message means that you do not even remotely share my son's life challenges or the life challenges of other severely autistic children whose parents are fighting to improve their life situations.

Barry Hudson said...

Hi Harold,

I would like Anonymous to read the following news report and explain to me that a cure is of no value. I have sent the same to Tina Fougere:


Toronto Star: http://www.thestar.com/News/article/191256
Mar 13, 2007 11:18 AM
Be the first to comment on this article...
Bob Mitchell
Staff Reporter

A Mississauga man has been placed under house arrest for nearly two years for his role in the starvation death of his severely autistic sister-in-law.

Justice Bruce Durno today also ordered Orlando Klass, 33, to take parenting skills counselling after convicting him of criminal negligence in the death of Tiffany Pickney, 23, on April 1, 2005.

His wife Allison Cox, 32, is to stand trial on manslaughter later this year in connection with the death of her adopted sister, for whom she was the primary care giver.

"The facts of this case are disturbing," Durno told a Brampton court this morning after accepting Klass guilty plea. "Despite his secondary role in caring for her he didn't take appropriate steps to keep her alive."

Durno said a lengthy house arrest was warranted given the "vulnerability of the deceased" and the "neglect" she faced in dying in a basement.

Klass was also warned he could be sent to jail if he breaks any terms of his two years less a day conditional sentence.

Pickney weighed just 84.5 pounds at the time of her death, but reportedly weighed more than 200 pounds seven years earlier – before her mother Margaret Cox died in January 1998. Despite being severely autistic and developmentally delayed, court heard that Pickney at one time was a strong girl with a substantial physical presence.

The young woman, who lived in a basement apartment in the Klass-Cox home on Fairwind Dr. in Mississauga, was found by police lying on a carpet with dried feces on her legs and underwear, court heard. There were also feces and red stains that appeared to be blood elsewhere in the basement.

A pathologist determined Pickney died on Friday, April 1, 2005 from central pontine myellinosysis directly linked to malnutrition and that she had been dead for at least 24 hours before Klass called emergency personnel at 8:20 p.m. the following night.

Crown prosecutor John Raftery and defence attorney Victoria Christie agreed the house arrest sentence was appropriate considering the role Klass played in the shocking death.

"He was very much the lesser player," Raftery told the court after reading an agreed statement of facts into the record. "His spouse was the primary care giver....Whether he was weak, he did not take steps to ensure Tiffany was cared for."

Christie told the court Pickney's death caused her client "sadness" and that he had "great affection" for her.

Court heard how Pickney required assistance preparing meals and using the washroom, but that there was no washroom in the partially finished basement. She also required constant supervision.

Klass admitted he discovered Pickney lying on a carpet, which he claimed she liked to do, when he brought her lunch earlier in the day at 3:30 p.m. He initially thought she was sleeping on the floor and admitted he was shocked when he nudged her with his foot and she didn't respond.

His wife and one of their three children were attending a birthday party and he admitted he didn't immediately call 911 or police because he wanted to tell his wife personally that her sister passed away.

Court heard the couple and their children slept in late on Saturday and watched television before Cox and her eldest daughter went to a birthday party.

Cox assumed full responsibility of Pickney's care after their mother died but court heard she – not Klass – soon cut off all social service assistance that had previously been supplied, including funding.

Under the terms of their mother's will, Pickney was to receive two-thirds of the equity from the sale or rental income of their mother's home with the remaining third going to Cox. The total amount would go to whoever outlived the other.

Klass worked long hours as a programmer analyst and was often away from the home for between 60 and 70 hours each week while Cox stayed home and cared for her sister.

Following an extensive investigation, Klass and Cox were arrested on July 25, 2005 for failing to provide the necessities of life and criminal negligence causing death. They spent four days in custody before being released on bail.

"He recognizes Tiffany was not being properly cared for and was not being properly nourished," Raftery told the court. "His conduct in not providing her with proper care and in not taking steps to provide her with proper nourishment constitutes a departure from that expected of a reasonable person in the circumstances."

Under the terms of his house arrest, Klass must reside in his home at all times for the first 15 months except to go to work and medical and court appointments. He is allowed to shop on Saturdays from 1 p.m. to 4 p.m. and attend church on Sundays from 10 a.m. to noon.

He will be under a 10 p.m. to 6 a.m. curfew for the remaining nine months of his conditional sentence. He will also be on probation for the next 36 months.

Barry,
Father to Barry II, age 4, ASD

Roger Kulp said...

As has been said,here and elsewhere,the anti cure people only speak for a very vocal subgroup of those with Asperger's,or high functioning autism.Many of whom,do not understand what it is like to be more seriously disabled,either in having a lower functioning form of autism,or in having many complicated medical,or neuropsychological problems in addition to the autism.

The past two years,have been very interesting for me to say the least.Like a lot of autistics,I had improved dramatically as an adult.As a child,I was like someone who had classic autism, but was verbal.I had a diagnosis,of childhood schizophrenia,ADHJD,and learning disabilities,but not autism.Developmental delays were not factored in to my original diagnosis at all.

I also have immune disease,and the two are related in my case.I am convinced,now more than ever,that my initial bout of meningitis,at the age of five months,was a contributing factor in my developing autism.It is increasingly likely,that I was born with an unusual type of neonatal lupus,which has many of the same immune anomalies autism does.

Anyways,I was very sick for most of 2007.I had acute meningitis,followed by a severe septic blood infection,followed in turn by a flare of shingles,with myocarditis.

I then began to experience actual autistic regression...as an adult.I basically fell back to where I was about eleven.The headbanging,the eloping.the stimming,and so much more all came back.

In September of this year,I was able to get that diagnosis.Not only of autism,not Asperger's,but of all four non verbal learning disabilities,as well.I now have to deal with DD people at the hospital,who are convinced I am not capable of living on my own,and I do live with my mother,but I have lived on my own in the past.I have never worked.

I learned a lot of the problems that I had blamed on the autism,were due to other conditions,that I have, that just happen to exist alongside the autism.It has given me a who different perspective,and I can now see that many of the anti-cure,"autism pride" people have never even considered living with some of the stuff I have.They come a very different place than I do.And many of the parents come from another different perspective than I do.

I recently had a very interesting exchange with Michelle Dawson,in the comments section of another blog.It was very insightful,and has caused me to reconsider some of my beliefs about autism, and neurodiversity.I doubt I will ever fully come around to their way of thinking,but in reading a lot of the blogs these people have,I have begun to understand where they are coming from,and they are some of the few that are raising all too valid points,like the lack of services for adults,and the possibility that the "epidemic" numbers groups like Autism Speaks cite may not be valid.

Neither side speaks for all autistics,although they both claim to.Neither side is 100% correct on everything.Neither side is going to go away,either. We need to have real,and intelligent dialogue about this.We are all in this together.

Arthur Golden said...

This seems a good place to mention that I am trying to focus my activities on "planning for a good life for persons with disabilities" both here in Israel and networking throughout the world. Reading various blogs and making comments is part of my networking efforts. Sometimes I even get involved with private email discussions with bloggers or commenters, and I can be contacted at golden@shani.net

As I have disclosed on your blog, my son Ben is now 36 years old, completely nonverbal with severe autism, and has lived at home with my wife and me for the past 12-1/2 years here in Israel (with very good day programs arranged without any help from the government). At age 12, your son Conor seems much "higher functioning" than my son was at that age, but I think they have a lot in common.

In a book published about 4 years ago, of which ABA expert James A. Mulick is a co-editor, chapter 2 concludes at page 29:

"No idea, model, method, or movement should be allowed to ordain what is right or wrong for an individual. Data can inform, advocacy can exhort, but at the end of the day, decisions regarding the issues unique to an individual belong as close as possible to that individual. The challenge in the field of developmental disabilities is to continue to provide sound options, not those based on supposition, to those making such life-altering decisions for the people they love."

I would add that I believe in person-centered planning and that any person, even with most severe difficulty in communcation and no matter how "low-functioning" that person is considered, should be the lead person in making such "life-altering decisions" as has been the actual situation for my own son Ben and I pray will continue to be so.

I look forward to you and I continuing to have a dialogue, which I hope will not only benefit our sons but many others throughout the world.

Arthur Golden

Autism Reality NB said...

Thank you for your comments Mr Golden.

I am puzzled though. If your adult son is non-verbal, low functioning, and living at home with you and your wife, how can he be "the lead person in making such "life-altering decisions""?

Does he lead in the financial planning, or in deciding how he will live after you and your wife are departed?

Arthur Golden said...

Harold,

I hope by now we can be on a first name basis.

Anyway, I checked your full profile and found an email address. Since you list an email address, I will use it to send you an answer to your specific questions. But it is now after 11:00 p.m., my son Ben just had several visitors who came to ask his opinion about recent world events in Mumbai and he needs my help to get ready for bed, so I will try to email you tomorrow.

Art