Autism Reality

A Spectrum of Perspectives About Autism

Much of what passes for discussion of autism issues on the internet is either congratulatory back slapping and in group high fives or it is bitter acrimonious sniping. I have been pleased over the last few days to be able to engage in rational e-mail discussion with Lisa Jo Rudy of About Autism.com. Ms. Rudy is the parent of a higher functioning autistic child. My son is diagnosed with a lower functioning classic Autism Disorder. Her site tends to feature links to several prominent anti-autism cure, neurodiversity blog sites such as Autism Vox, Neurodiversity, Autism Hub, Autism Diva, Mom-NOS etc.

Notwithstanding her affinity for the neurodiversity perspective and my aversion to that socio-political movement we were able to exchange views rationally on such topics as curing autism, autism realities etc. I give Ms. Rudy most of the credit for that. She has also taken the generous step of referencing my perspective and this blog site on About Autism.com actions which I genuinely appreciate. I thank Ms. Rudy for her calm rational discussion of autism issues with someone from outside the neurodiversity perspective. Ms. Rudy’s words about a spectrum of autism perspectives are worth remembering.

A Spectrum of Perspectives on the Autism Spectrum
If autism is a spectrum disorder, then it seems reasonable that there should be a spectrum of perspectives on that disorder. At one end of that spectrum are the neurodiversity advocates who feel that autism is a difference to be celebrated; on the other end are those who work toward and advocate a cure for autism. Both groups are passionate, and both believe deeply in their own points of view – with some people, like me, sharing elements from both perspectives.

Harold Doherty is a Canadian blogger and the father of a young man with classic autism. Having seen some of the more frightening ways in which the world can treat a person with profound autism, he believes strongly in the importance of seeking treatments and potential cures. All this while supporting and loving his son:

“I love my son dearly. I have just returned from walking about our community with him, enjoying his company. As I typed this note he very affectionately grabbed me from behind and hugged me – while squeezing forcefully on my windpipe. He did so without any aggressive intent but without understanding the potential consequences of his actions.

That is autism reality.”

http://autism.about.com/

March 27, 2007 Posted by | autism cure, autism spectrum disorder, Lisal Jo Rudy, low functioning autism, neurodiversity | 2 Comments

Is The Neurodiversity Movement Ashamed of Lower Functioning Autistic Persons?

It seems at times that the Neurodiversity Movement is ashamed of the lower functioning members of the autism world. Autism is defined by the ND movement as simply another natural variation of human wiring. “Autistic intelligence” is defined as a different, perhaps even a superior form of intelligence. Doubt is cast on whether lower functioning autistic persons even exist by the more strident ND’ers. Even autistic persons who have demonstrated no communication skills, engage in seriously and repetitively self injurious and dangerous behavior should not be treated or cured in the view of the ND movement.

Parents who seek to help their OWN children, not the ND’ers themselves, but their own children, through attempts at cures or treatment are vilified by the ND movement. Every major parent driven autism advocacy organization from Cure Autism Now to Autism Speaks, Autism Society Canada, Autism Society America, National Autism Society UK, FEAT organizations, all are roasted for their efforts. They are derided as self centered whiners by the proud members of the ND movement. Pejorative labels such as “Autism Squeaks” and “curebies” are used to dismiss those seeking to cure or treat autism.

Recently CNN’s Dr. Gupta featured the story of Amanda Baggs, diagnosed as being a low functioning autistic person, but clearly very intelligent and, with the aid of technology, an excellent communicator. The implied message – even low functioning autistic persons are really quite intelligent and do not need a cure or treatment. Unfortunately Dr. Gupta played into this denial of the existence of truly low functioning autistic persons by continuing a long history of media focus on autistic savants and other high functioning autistic persons while ignoring the sometimes brutal realities which confront low functioning, seriously disabled, autistic persons.

My autistic son, Conor, is a low functioning autistic person who brings me great joy. I delight in talking about how happy he makes me every single day. But, unlike members of the Neurodiversity I am not ashamed to admit the severe challenges he faces in life and I am not afraid to talk about them publicly. Unless such public discussion takes place there will be no improvements for Conor and other autistic persons like him. Of course that is exactly why the Neurodiversity movement attempts to censor such discussion. Content with themselves they wish to deny the opportunity for lower functioning autistic persons to be treated and cured. Is the Neurodiveristy movement ashamed of its lower functioning autistic cousins? It certainly looks that way to this “NT” (Neurotypical).


TIMES ONLINE

Is autism simply in the wiring?


Ailments come and go. I don’t mean in a personal sense — although my lumbar vertebrae are creaking again after a blissful period of quiescence — but in a social and historical sense. Homosexuality is no longer an illness. Lefthandedness no longer merits a cure. Could autism be next?

Some people argue that the developmental disorder — which compromises communication, social interaction and imaginative play — is merely an example of human “neurodiversity”. Just as disabled individuals sometimes prefer to call themselves differently abled, some people with autism would like to be regarded as differently wired. To try to alleviate or cure autism, they say, is tantamount to oppression. And genetic tests, which are in development to identify autism in the unborn, are a mere step away from eugenics.

This movement, which boasts groups such as Aspies for Freedom (a reference to Asperger’s Syndrome, a high-functioning form) and the Autism Liberation Front, does not accept the image of autistics as odd loners. Instead, nonautistics are portrayed as sad conformists unable to operate outside the social horde. It opposes any attempts to “cure” or even treat autism.

The movement is driven, unsurprisingly, by those at the high-functioning end of autism. It is ironic that they have been accused of not empathising with others at the low-functioning end, who are less able to cope with everyday life.

Professor Simon Baron-Cohen, a leading autism researcher at the University of Cambridge, says: “I agree that high-functioning autism is better characterised in terms of neurodiversity. Low-functioning autism may also be, but is probably best characterised as involving additional disabilities, such as learning disability, language delay, epilepsy and so on. I don’t think we are looking to ‘cure’ autism any more than we are looking to cure lefthandedness or being gay. But if there were treatments or interventions that help without affecting the areas of strength [such as the excellent attention to detail] I imagine these would be welcomed.”

http://tinyurl.com/2t6yp9

February 26, 2007 Posted by | Autism Society America, Autism Society Canada, autism speaks, autism spectrum disorder, Baron-Cohen, CNN, Dr. Sanja Gupta, FEAT, neurodiversity | 6 Comments

Funding Critical to Autism Research

In the excitement of the big autism genome breakthrough the Montreal Gazette offers an important reminder that the research behind this breakthrough was made possible by funding. Funding is critical to sustained uninterrupted research. Now is not the time for complacency. Now is the time to move ahead with more research and with more funding to ensure that the research continues.

Thank you to Dr. Peter Szatmari and all involved in this collaborative effort. As a Canadian I am very proud of the Canadians who led this research effort and I hope that our federal government shows some heart, and some good sense, and continue to fund autism research.

Funding helped autism discovery

The Gazette

Published: Tuesday, February 20, 2007

News of a breakthrough in understanding the genetics of autism, which was splashed dramatically across the world’s front pages yesterday, provides a precious lesson in the value of research.

The discovery came from a vast sleuthing effort: More than 130 researchers from 50 institutions in eight countries made scans of DNA from 8,000 people in 1,600 families. From all that data, scientists uncovered two new mutations possibly linked to an increased risk of susceptibility to autism, a neurological condition of varying degrees of complexity. The breakthrough should lead, via more accurate diagnostic tests, to earlier, more pertinent therapy.

All those resources were mobilized because of the growing realization that autism is far more widespread than previously thought, touching as many as one child in 165.

Canadians were among the scientists who led the effort. Peter Szatmari, director of the Offord Centre for Child Studies at McMaster Children’s Hospital, is described as setting the groundwork for the international effort that got under way in 2002. Steve Scherer, senior scientist of genetics and genomic biology at Toronto’s Hospital for Sick Children, is a project co-leader.

The international research effort is run by the Autism Genome Project, Canada’s part of which is underwritten by a $6.9-million grant from Genome Canada, primary funder in Canada of genomics and proteomics research.

Every Canadian should be proud this country has contributed to this promising research.

Despite some recent successes, Canada’s investment in scientific research has not been everything it could be. In 2005, 40 prominent scientists criticized the Liberal government’s funding policy, which required scientists seeking federal funding to find matching money elsewhere. The scientists argued scientific excellence alone should be considered, because premature emphasis on commercial application could stifle basic research.

Ottawa has since 1999 pumped more than $7 billion into scientific research – enough to keep top scientists in the country. But that funding could come to an abrupt end once $400 million in grants announced in November by Industry Minister Maxime Bernier runs out.

The dangers of this kind of off-and-on-again approach to funding were explained to The Gazette in 2004 by Sean Taylor, project manager for the Montreal Proteomics Network: “You don’t invest all this money in burgeoning fields like genomics and proteomics, and then just drop it,” he said. For Canada to become a research hub, scientists need time and secure funding, Taylor said.

Alberta, at least, seems to understand that. Last week, it announced it will use money from the Alberta Heritage Foundation for Medical Research to try to attract – and keep – “superstar” medical researchers to the province. What a good investment.

February 20, 2007 Posted by | Autism Genome Project, autism spectrum disorder, funding, govenrment, research, Szatmari | Leave a comment

Canadian Breakthrough Offers Hope on Autism

The Globe and Mail headline says it all. Hope.

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Canadian breakthrough offers hope on autism

Project makes possible DNA test to identify children most likely at risk to condition

From Monday’s Globe and Mail

A massive international effort led by Canadian scientists has homed in on the genes behind autism – a breakthrough that could revolutionize how the mysterious and surprisingly common condition is both detected and treated.

Touting it as the most significant advance in the field in 30 years, researchers say the landmark project has put within reach a DNA test to identify children with autism early enough to counter the condition’s worst effects.

“I don’t think it’s inconceivable that we’re going to be able to prevent autism down the road,” said study leader Peter Szatmari, director of the Offord Centre for Child Studies at McMaster Children’s Hospital in Hamilton. “The clinical implications of this discovery are unprecedented.”

Doctors currently rely on psychological tests to diagnose autism spectrum disorders in children at age 2 or 3. But a DNA test could identify those affected as babies, or perhaps even before they are born.

The findings, based on the largest autism DNA collection ever assembled, could also allow parents who have children with autism to learn through genetic screening their chances of having another affected child.

“If you know ahead [of time] of your predisposition to autism, you can make an informed decision,” said Marie Jolicoeur, a Burlington, Ont., mother who has two sons with autism disorders and whose family contributed DNA to the project.

Using new genome scanning tools, researchers have found that several different autism-related genes can play a role in different families. This helps to explain why no two children – not even identical twins – have identical symptoms.

The researchers have pinpointed at least five areas of the genome that harbour genes linked to autism susceptibility, including those crucial for brain function. They have also found a genetic mutation tied to the disorder in girls – who are four times less likely than boys to develop autism disorders.

The work has also highlighted how autism can spring from genetic quirks not seen in either parent – suggesting that a genetic glitch has randomly emerged in the sperm or egg cells of the father or mother prior to conception.

Co-author Steve Scherer, senior scientist of genetics and genomic biology at Toronto’s Hospital for Sick Children, said, “It may be that 5 to 10 per cent of autism cases are arising from these de novo [new] mutations.”

The research, released yesterday in an advance online publication of the journal Nature Genetics, is the first part of a two-phase study run by the Autism Genome Project. It involves more than 137 researchers from 50 academic institutions in eight countries and the study of nearly 8,000 people from 1,600 families who have at least two members diagnosed with an ASD. ………

http://tinyurl.com/3cjfmy

February 19, 2007 Posted by | autism, autism genome, autism spectrum disorder, research | 3 Comments

Neurodiversity’s Hidden Truths

When I posted yesterday about “Neurodiversity’s” attempts to downplay the existence of severely autistic persons I expected, and received, some heated comments although some were civil and on topic enough to post. But none of the comments that I received acknowledged a central reality that the Neurodiversity movement seems ashamed to admit – that there are many autistic persons in the world whoin fact are severely disabled, who are dangerous to themselves and who require 24/7 care and attendance to ensure their safety. I am still waiting for one of the Neurodiversity advocates to admit these truths – but I am not holding my breath while I wait.

The ugly truth is that many in the Neurodiversity movement seem ashamed to acknowledge the existence of severely autistic persons – like my son.

February 18, 2007 Posted by | autism, autism spectrum disorder, neurodiversity | 8 Comments