‘My autism diagnosis was the best thing that ever happened to me’

"Most of the time I feel that I do not understand the world. I feel a distance between me and what is going on in the world around me. I just want to scream and shout to the world about what I am truly feeling right now. I want the world to listen to me like they do with everyone else." Joanne Weller, aged 21

"Society in general needs to be more understanding, adaptable and inclusive of people with autism. We need to be recognised for the enormous positives we can contribute, particularly in the workplace, rather than in the negative way we are perceived now." Lara Smith, aged 20

These quotes from two young women with autism describe, in their own words, the struggle they and thousands of others face in a society that tends to focus only on their disabilities and not on their many and varied abilities. Lara Smith and Joanne Weller were speaking at the AsIAm national conference, which took place in Dublin earlier this month.

Central to the conference was highlighting the importance of recognising the positives that people with autism can bring to society and empowering them to reach their full potential.

AsIAm aims to provide a one-stop shop for the autism community in Ireland, including informing the public and those with autism about the condition, providing a platform for people with autism to share their stories and advocating for the concerns of the autism community.

According to chief executive Adam Harris, people with autism continue to face unnecessary barriers in all aspects of life. "Students with autism are twice as likely to be bullied as their peers, about 80 per cent of people with autism are long-term unemployed, and about one in three people with autism experiences mental health difficulties."

However, Harris said that many of the obstacles facing people with autism could be removed and society needed to be organised in a way that no longer ignored their needs.

Dr David Carey, a psychologist with more than 25 years' experience in both clinical and educational settings, said the "harsh reality" was that parents struggled to get a diagnosis of autism for their children and once they get that diagnosis they get "a pamphlet and a handshake" and then spend the rest of their child's life "trying to scramble for services and supports".

Problems

Speaking to

The Irish Times,

Carey said the problems faced by parents in achieving a diagnosis and support for their children did not lie with the staff who worked in the system, who were highly qualified professionals, but rather in the system itself which was “over-burdened, fragmented and disorganised”.

Carey also spoke of the “poverty” within society that permitted us “only to see disability”. “It is time to wake up to the human frailty within us that causes us to see only the things some people in our communities can’t do,” he said.

The theme of the conference was "empowering potential" and nowhere was this more evident than in the talk by Dr Peter Vermeulen, world-renowned expert in the field of autism.

According to Vermeulen, some common misconceptions about autism are that those with milder forms of the condition are happier than those with severe autism and that the more supports you give someone with autism the happier they are.

He said studies had shown that there was no link between IQ, severity of autism and quality of life, and the amount of support a person with autism receives does not predict quality of life.

According to Vermeulen, over the past 70 years of studying autism there has been a focus on the negative aspects of the condition. While he acknowledged it was important to understand issues such as social problems, communication, sensory issues and challenging behaviour, he said it was now time to focus on positives and the wellbeing or the happiness of people with autism.

While everyone’s idea of happiness was unique to them, Vermeulen said it was important to avoid both neurotypical projections of happiness; what non-autistic people think will make people with autism happy; and stereotypical ideas about autism.

He suggested a number of strategies that could improve the emotional wellbeing of people with autism.

These include a balance between supporting or protecting people and challenging people, the creation of an autism-friendly environment and ensuring people with autism experience success in life, vital for positive self-esteem.

“I do believe that people with autism have the power to cope with difficult situations. We only have to teach them to cope and to believe in their abilities,” he said.

An autism-friendly environment was one that was “90 per cent clarity and predictability and 10 per cent normal friendliness”, he said.

“If you want to be autism-friendly give them clarity and predictability first, all the rest comes later,” he explained.

Contribute to society

Vermeulen said he was convinced that everyone with autism, no matter what degree, could contribute to society.

“I believe in the strengths of people with autism. Make sure when you give support that they have success, not just in the classroom but out there in real life. Make sure they can be satisfied, so focus on positive feelings, not just the negative ones,” he said.

The benefits of providing supports to allow people to fulfil their potential was clear in the words of University College Cork (UCC) student and AsIAm volunteer Brian Irwin. Speaking at the conference, Irwin said that being diagnosed with Asperger's syndrome at 21 was "the best thing" that ever happened to him.

Irwin articulately outlined his experience of struggling for 15 years through primary and secondary school before being diagnosed and said he simply believed his teachers when they told him he was “lazy” and “not working hard enough”.

“I got my diagnosis and [it was] the best thing that ever happened to me. It changed my life because I had believed everything I had been told. I believed that I was lazy; that I wasn’t going to achieve anything; that I was worthless; that I wasn’t going to be able to do anything in my life. And then it stopped being my fault.

“It was the fact that I had a disorder that I had to work around, and with the diagnosis came the supports that I needed.”

Thanks to the supports he receives in UCC – such as a scribe for exams and reading time – he is studying environmental science and he said his experience highlighted the need for reform in the education system.