I am an active autism campaigner and Ambassador for the National Autistic Society (NAS) as well as having founded Staffordshire Adult Autistic Society (SAAS). I have Asperger’s syndrome.
My Twitter account reaches hundreds of thousands of people, and so when an autism topic trends my Twitter feed usually becomes inundated with people’s opinions and responses.
This is what happened when celebrity Katie Hopkins started to live tweet during Chanel 4’s airing of Born Naughty?. Unfortunately the show had a provocative title which I feel did it a great disservice; a disservice which was helped along by Katie Hopkins’ tweets during the section that dealt with a nine-year-old girl who was eventually diagnosed with autism and Pathological Demand Avoidance (PDA).
Not surprisingly, another Channel 4 documentary, The Stranger on the Bridge, also provoked tweets by Katie Hopkins that disgusted me. After she made offensive comments regarding Ed Miliband, I decided to set up a petition on behalf of the autism community, asking for an apology because I speak on behalf of the thousands of people who can’t speak up for themselves.
I was recently interviewed by BBC Radio Stoke on my opinion regarding Katie Hopkins tweets about Ed Miliband. She sent in a statement in which she told that her tweets were all done in ‘jest.’ My petition to date has over 11,000 signatures, but this cuts no ice with Ms Hopkins.
Let me explain.
Last month even Facebook was moved to update its definition of hate speech for the online community. They state:
“Content that directly attacks people based on their race, ethnicity, national origin, religion, sexual orientation, sex, gender or gender identity, or serious disabilities or diseases.”
Most of the messages I receive are from parents who are distressed and outraged by Ms Hopkins casual mocking of our condition.
When it comes to living with autism though, the harm in Katie’s speech is not just that she wounds with her words, but that she may actually impede the areas of diagnosis, intervention and treatment of medical conditions.
Born Naughty? is a show with a very different title trying to do ‘good.’ The first episode, in my opinion, was not a bad show. It contained some useful advice and support for parents, but that was drowned out by the controversy over Hopkin’s remarks.
The show however failed in its trying to make the matter of obtaining a diagnosis of autism, or any other condition, seem too simple. Autism is a pervasive developmental disorder that is diagnosed by criteria known as ‘The Triad of Impairment.’ Diagnosis is not only difficult but complex. Why does diagnosis matter? This is because early intervention has been shown to be a key factor in making a difference in a child’s life.
In 2012 The National Autistic Society conducted a survey where data showed:
‘Although there have been some improvements in waiting times over the past 20 years, 34% of people we surveyed said they had to wait three years or more for a diagnosis, with a further 30% saying it had taken between one and two years’
It’s so important that diagnosis is made early in a child’s early years.
Despite the work that advocates and charities do, there is still a stigma attached to the diagnosis. Parents feel judged, feel worthless and suffer from depression and anxiety. What worries me is that Ms Hopkin’s comments and mockery will prevent a parent from reaching out for help. As a result of such comments, a mother might decide it is better not to risk the mockery and condemnation that will surely follow.
Worse, even though she may be confident that her child has autism, she may put off going to her GP for fear of a Katie Hopkins type reaction from those around her at school; in her family; in her community. I worry for those out there who are still without a diagnosis.
Before I got diagnosed, I felt trapped and lonely in a world of my own, I became an advocate because I always wanted to help other people, but if I hadn’t received my own diagnoses of Asperger, I would have taken a different path. Asperger has become a part of my life now.
Not everyone is that strong, which is why I have asked Katie Hopkins to apologise to the Autism community. I doubt very much that she will do so though. Her reaction has been to block me and my followers. Still, I would like the opportunity to show her that I am not a ‘dullard’ and that you can have Asperger AND a sense of humour. A few weeks ago I even tweeted her to ask if she wanted to spend the day with me in order to see what autism is like, but she didn’t respond.
I can’t stamp out all the negative comments that people say on twitter or social media about disabilities, but maybe I can educate others on its dehumanising effect, and in doing so help parents understand that there is a world of support out there.
Imagine Katie spending a day or a week with me, seeing what my world looks like. That would be a show on Autism worth watching.
first posted on the Huffington 20/05/2015