Denise Hall: The ART of a voice for autistic people

Q&A: Fiona O’Leary, Autistic Rights Together
Denise Hall: The ART of a voice for autistic people

It was recently noted by United Nations human rights experts that some 70 million people worldwide are estimated to be on the autistic spectrum.

“As part of human diversity, autistic persons should be embraced, celebrated and respected. However discrimination against autistic children and adults is more the rule than the exception.

In many countries, autistic persons lack acess to services which would support, on an equal basis with others, their right to health, education, employment and living in the community. Services are too often far from human rights-friendly, or evidence based,” according to UN human rights rapporteurs Catalina Aguilar and Dainius Puras.

Autistic persons are often exposed to medical practices which are unacceptable from a human rights point of view.

Practices that are often justified as treatment or protection measures violate their basic human rights, undermine their dignity and fly in the face of scientific evidence.

There has been a proliferation of medicalised approaches, relying on the over-prescription of psychotropic medications, placement in psychiatric hospitals, the use of physical restraints and electro-impulsive therapy.

These approaches may lead to a deterioration of the condition and, the UN says, amount to ill-treatment or torture.

A few examples of autistic symptoms and treatments were described long before autism was named. The “Table Talk” of Martin Luther, compiled by his notetaker Mathesius, contains the story of a 12-year-old boy who may have been severely autistic.

Luther reportedly thought the boy was “a soulless mass of flesh possessed by the devil” and suggested he should be suffocated (but doubts were later cast on the veracity of Mathesius’s report).

There are many other horrifying examples in history of those with autism (before it was a recognised diagnosis) as being possessed by some malign influence,living in forests as “wolf children” or otherwise behaving in an anti-social and possibly dangerous way.

Yet, historical records have revealed that some of the brightest and most creative people in history may have been on the autistic spectrum.

Albert Einstein, who had difficulty with social interactions, had tactile sensitivity and was very intelligent, yet had difficulty learning in school. And he found it difficult to get a job.

His differences made him develop the ideas that made him famous.

Charles Darwin was a solitary child, and avoided interaction with others in later life. Professor Michael Fitzgerald has described Darwin as “ a rather obsessive-compulsive and ritualistic man”.

Artist Michelangelo was obsessive, and followed repetitive routines. If they were interrupted, it would create great frustration.

If we were to take a second look at those who we consider different, we might realise that being different is not a bad thing, but something to be celebrated and accepted. This means providing individuals with the skills and support they need to have choice and control over their lives. It’s also about equal opportunities in education and mainstream employment.

Autism is not a disease, though some people may have medical conditions as well as autism, for which they must receive proper medical treatment.

On the recent World Autism Awareness Day, UN Secretary-General Ban Ki-Moon said: “With adequate support they can and should be educated in the heart of their communities. Now is the time for even greater access and work opportunities for people with autism.”

Now, a West Cork couple have set up an organisation to raise autism awareness.

Fiona and Tom O’Leary of ART (Autistic Rights Together) are from Drimoleague, and have five children. Two of their sons have autism, and Fiona has Aspergers.

They are particularly concerned about abusive and unproven treatments for autistic people. Fiona told me about some of them.

How do you think we are coping as a society today, Fiona?

We seem to be going backward. We’re still looking at old books, and autism is being described as an epidemic that’s worse than cancer or AIDS. I don’t use the term “disordered”, as I don’t feel disordered, and I object to this negative language.

We are being left out of discussions regarding our future, because the stereotype many people have is so debilitating.

There are some so-called treatments out there that are of great concern, MMS2 in particular. This is essentially a bleach solution, devised by some ill-informed people who think that autism is caused by parasites.

It is being taken orally and via enemas, all very dangerous. In this scenario, a child having convulsions is thought to be a good thing, as, its proponents say, it resets the brain.

I believe that your organisation is especially concerned with autistic people being represented on the boards of support organisations?

Yes we are. And our premise, “nothing about us without us”, is a good place to start. Any research that will bring positive benefits to people on the autistic spectrum is welcome, but we have to be involved at a leadership or senior level.

ART exists to give autistic people a voice, a meaningfull input into the decisions made by the powers that be in regard to the futures of those who live on the autistic spectrum. This is a condition that is struggling hard to find acceptance in society.

Not including people with autism is like having a women’s group without any women. In Canada, people with autism have a 40% employment rate. But in Ireland, it’s only 1%.”

Your days must be very full with your family and ART?

It’s busy alright. My youngest is five and my eldest is 22.. I have two wonderful and gifted boys who are on the autistic spectrum.

But I think what’s going on now, with some of these unlicensed “treatments”may have serious side effects on an individual’s well-being.

ART is campaigning world wide to bring an end to abusive treatments being given to autistic people. That is so important to me and my family.

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