Why I’m not feeling blue on Autism Day

By Fiona O'Leary


The message being used by one organisation is instilling fear and hatred about the condition, says Fiona O’Leary, who has Asperger’s.

TODAY is World Autism Awareness Day, and the sound of alarm bells ringing is eerily unsettling to me, and to many other people who are on the autism spectrum.

I did not use the term ‘disorder’, as I do not feel disordered and I object to this negative language. But who will speak for me, and for the autistic community?

We have a voice, we are connecting and supporting each other, yet we are not being heard above the mainstream portrayal of autism as a ‘devastating disorder’. We are being left out of most discussions regarding our future, because the stereotype of us is so debilitating.

Nineteen years ago, my son was diagnosed with autism.

It was not easy then, but as challenging as it was, I feel the parents whose child is diagnosed today receive a barrage of negative information from powerful ‘awareness’ groups.

One such organisation is Autism Speaks, which is the driving force behind the ‘Light It Up Blue’ campaign that has been adopted by many of the prominent Irish autism charities and awareness groups.

I, for one, and many other individuals on the spectrum, along with the majority of self-advocacy groups, will not be lighting anything blue, and for indisputably good reasons.

Firstly, Autism Speaks’s senior leadership does not include a single autistic person, and excludes autistic adults from its board of directors, leadership team, and other positions of seniority.

In November, 2013, John Elder Robison, the only Autism Speaks advisory board member who is on the autistic spectrum, resigned his post.

Elder Robison was protesting the organisation’s portrayal of ‘the problem’, which described the families of autistic children as not living, but merely existing.

Elder Robison stated in his resignation letter that after four years of attempting to reform the organisation from the inside, he had been unsuccessful, and he could no longer be a part of the “only major medical or mental health, nonprofit organisation whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target”.

In one of Autism Speaks’s most prominent fundraising and awareness videos, one of its executives says how she had considered driving off the Washington Bridge with her autistic child.

She didn’t, because she had a ‘normal child’ also. Her words were spoken while her autistic child was playing, within earshot, in the background. Another video, the now infamous ‘I Am Autism’ ad campaign, tells the listener that ‘autism’ knows where you live, that it is an epidemic worse than cancer, AIDS, and diabetes combined, that it will destroy your marriage and make you bankrupt, that you will never go to a church, a park, a birthday party again, without a struggle, without embarrassment. Is it any wonder that lady felt like driving off a bridge: how long can one breathe in this demonisation and horror?

There is much more to highlight about this organisation, but if the reasons here are not alarming, then we need to wake up from the utopia of ignorance in which we doze.

Because Autism Speaks does not speak for me and I have Asperger’s.

It does not speak for my two wonderful and gifted boys, my reasons to live, who are on the autistic spectrum.

Yet Autism Speaks is ‘sounding the alarm’ with their latest awareness campaign, around the world and, most worryingly, right here in Ireland.

I participated on the panel of the final public consultation meeting of the IARB (Irish Autism/Neurodevelopmental Registry and Biobank) held at University College Cork last month.

The proposed Registry and Biobank is a partnership between Trinity College Dublin, NUI Galway and Autism Speaks. When I saw Autism Speaks’s logo — of a blue jigsaw piece — occupying equal space on the literature and advertising of a proposed biobank, I was more than a little unhappy. I was stunned at the logic of including an organisation that is controversial within the autistic community in a venture that needs that community’s cooperation if it is to be successful.

I expressed my concerns and I was invited to participate.

Myself and a small group of advocates went to object to the involvement of Autism Speaks, making the logical point that by including Autism Speaks they would be excluding a huge number of autistic people and their families, who rightly boycott that organisation.

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. However, the propaganda used by Autism Speaks is instilling fear and hatred about a condition that is struggling to find acceptance in society.

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