Embracing autism head on

Paula Jessop and Jason Edgecombe are examples of successful adults living in the community with autism. Photo: Tracy Hardy.

Forget trying to be ‘normal’ – just try to be you.

That’s the message for young autistics from two Tauranga residents who know more about the struggle to be themselves than most.

Jason Edgecombe and Paula Jessop are both high-functioning autistics and run their own small businesses aimed at helping young people steer their way through life with autism.

Neither Jason nor Paula were diagnosed with Asperger’s Syndrome, or high-functioning autism, until they were adults. They don’t mind being labelled as autistic – in fact, they embrace it.

“We all have labels but we should use labels to empower ourselves, not take away from us,” says Jason.

Canadian-born-and-raised Jason says growing up with a disability in the mid-90s wasn’t socially accepted and he was bullied as a child. His diagnosis of autism at the age of 23 was a revelation.

“It was like putting on glasses because there were all these things I was like, and ways I would react to certain situations and I could never really explain it. Half the time people just thought I was an asshole.

“When I finally got that diagnosis and my wife and I were able to look at the traits of Aspergers I was finally able to look at what I was like and see why. I was able to understand who I was and why I was like how I was and be able to control it and start using it, rather than being used by it.”

Jason’s business, Breaking the Label, is focused on helping young autistics identify who they are.

He runs four youth groups and is contracted to work with two others. He also works with an autism home schooling group called Mockingbird and does one-on-one peer mentoring with young autistic people.

He also speaks at various conferences, including the 2015 TED X conference in Tauranga. Public speaking is one of his “natural talents.”

“If you’re engaging one person or 1000 people, the principle is the same. My anxiety and stress hindered that in my younger years but as I got older and started to master my quirks I was able to manage my anxiety and let my epic speaking abilities come out.”

Paula was diagnosed with Aspergers in 1999 and while she welcomed the diagnosis, she struggled to find any helpful information about it.

“When I tried to find out what it was, all I could find was psychology texts that were inherently really negative – you don’t have empathy, you don’t care about people, you don’t have the ability to love. I couldn’t find anything positive, or any other autistic people either.”

As a graduate student she began her own research into Aspergers. It led her to where she is today, trying to show young people with autism that it’s not a negative and their life doesn’t have to be a struggle.

Through her business Autism Insights, she gives presentations to medical professionals, disability organisations and parents trying to dispel the negative stereotypes.

“I call it radical acceptance – not just tolerating us but genuinely seeing our strengths and valuing us as the people we are.”

She also provides peer mentoring for young adults, mainly female, aged 18-24.

Paula and Jason met through an autism network and realised their work was complementary.

“We like to try to reach out to young people because they don’t get positive role models like us,” says Paula.

“You won’t find anything like this anywhere else in the country. The idea of autistic adults mentoring young people is quite new but parents are telling us they want it.

“There has always been the perception that young autistic people needed to learn better social skills to be ‘more normal’. Our approach is quite different.”

People think having autism means having a disorder and being dysfunctional, says Paula, but most autistic people go about their lives with those around them being none the wiser.

“Most people have probably known quite a few autistic adults in their life and probably thought they were quirky or eccentric, a bit different or unusual but not known what it was.”

Is it important for people to know that their ‘differences’ could be autism?

“Yes it is. I like to refer to autism as a different way of thinking, feeling and experiencing the world but experts will say it’s a disorder. We grow up knowing that we are different, that there is something different about us and we don’t know what it is. By knowing what it is we can address any of the challenges we have as a result of those differences and find strategies to deal with them,” says Paula.

“If you don’t know why you’re different you tend to get depressed because you’re walking around feeling confused.”

Paula knows first-hand about the depression. It saw her end up in the mental health system.

“I had a lot of problems learning, was bullied a lot and had trouble keeping friends. It was quite awful.”

Paula says the irony is that while she and Jason grew up not knowing why they were different, today’s young people do know why they are different but are often told by medical professionals that autism is a disorder that they will ‘suffer’ from all their lives.

“Today’s young people growing up with a diagnosis of autism are exposed to society’s negative ideas about who they are and they internalise all that and end up depressed and anxious because everyone tells them they have a disorder.”

Jason says one of the myths about autistics is that they aren’t social.

“That’s completely untrue – I just don’t want to have a conversation about the weather. I was mentoring a young woman recently and we were talking about the effects of chaos theory on the universe. This is a woman who will not say three words to you about how she’s feeling or what her dinner was like.

“Our social interaction is more around that deep level than surface interaction. Because we don’t do that, we get called anti-social, which is hilarious.”

Another characteristic of autism is having a focus on a particular topic.

“The experts call it getting fixated and having ‘restricted interests’ which is very negative. To us that is not restrictive. We see it as a strength. If you’re doing a PhD at university that’s a very good strength to have!” says Paula

Autistics are also known for being opinionated, she says, “but if we’ve got an opinion we probably spent a month researching it really thoroughly before we formed an opinion so we feel entitled to be quite opinionated.”

Autistics are also very ethical and moral and have a strong sense of justice.

“We say what we mean and we mean what we say. If there is a rule it needs to be followed – there is no middle ground,” says Jason.

Paula and Jason see a high level of unemployment and under-employment of people with autism.

“People see an apparent lack of social skills and anxiety in a job interview so we’re not always able to promote ourselves well. If you employed someone like us you are likely to get someone very dedicated and focused on the job, very honest and extremely conscientious,” says Paula.

Paula says public knowledge of autism has certainly increased over the past 20 years but it is “mixed blessing.”

“There are a lot of myths and stereotypes. For example, how often do you see people like Jason and I, adults with autism living pretty regular lives, working, with children. You don’t see that in the media. You tend to see what I call the ‘tragic’ autism stories – mothers filled with grief to have this tragic diagnosis of their child and the hardship it has caused.”

“There’s more knowledge but not enough acceptance,” says Jason.

To find out more about Paula and Jason’s work visit Paula’s website www.autisminsights.co.nz and Jason’s Facebook page NeuroDiversity.