Photo: 123rf.com
Kiwis with autism say they don't feel accepted by society - or by their colleagues.
An international study released today shows only one in five autistic New Zealanders feel accepted by the people around them.
Autism advocates say stigma is common, and workplaces have a long way to go to accommodate people with autism.
When Joanne Dacombe told her workplace she was autistic, she said the way co-workers treated her changed.
"All of a sudden it was like, there was othering - like I'm going to put you over there in that category. It was like a batting away.
"If I made a small mistake, all of a sudden it became a big mistake, that in past might have been overlooked."
She is now president of the Disabled Persons Assembly, and said autistic people still faced a lot of stigma outside of advocacy spaces.
"It makes you feel very uncomfortable, very unaccepted. When there's acceptance, that really great as far as it goes, but when there's not acceptance, that can be quite a hostile and isolating environment."
According to Autism NZ, there are 96,000 New Zealanders diagnosed with autism - and the study released today shows just one in five of them feel they are accepted.
The international study surveyed 306 autistic adults from eight countries - and in New Zealand, the UK, Australia, and Japan, less than 20 percent of respondents said they felt accepted.
Report co-author Dr Ruth Monk, a University of Auckland research fellow, said they were not surprised by the statistic.
"It is kinda validating, having the research to back up what we already know, but it's a stark reminder of all the work that needs to be done to create a society where we can live as our authentic selves."
They said the barriers autistic people faced in education and employment showed the lack of acceptance for autism.
"We're often kind of presumed to be incompetent. For example, in the workplace, it's assumed that we should just be grateful to have a job, because of our being autistic is seen as inherently less valuable than other people."
Dr Monk said there had been moves towards more accepting workplaces, but there was some way to go.
"To like keep improving, we need to move away from this idea that we can succeed despite our autism, towards being valued as authentically autistic people."
Rory Hennessy is a self-employed lawyer - and said working for himself meant he could better accommodate his autism.
"I can set my own rules, and I don't have to force myself to interact with people face to face.
"Unfortunately, a lot of people on the autism spectrum don't work. So I've been very very lucky in the way I've gone about it."
Internationally, it is estimated than only about 20 percent of people with autism were in full-time employment.
After he first graduated, Hennessy said his autism made job interviews more difficult.
"It was a real struggle to even get an interview, and when I did get an interview, I would blank completely and I wouldn't know how to answer."
Sharing 'can help create more understanding'
Dacombe said some workplaces thought autistic people were too hard to work with, and to make accommodations would be too costly - but that was borne from a lack of understanding.
"We might stim - for example we might pace, or use fidget toys, or avoid connecting with people over small talk. We can be considered too loud in many ways for some people, or be considered blunt or rude."
Dacombe said she had to mask everyday - covering up behaviours seen as autistic - to be taken seriously.
"I do feel I have to mask in nearly all settings, because if I don't mask, it might reinforce societies perception of autistics having undesirable behaviour issues.
"One person even said about me, 'Oh she doesn't count, as an autistic person', leading me to assume that there are some sort of acceptable versions of autism, that my masking is successful in making me appear not autistic, and that is somehow more acceptable."
She said that masking was exhausting, and she often had to schedule time to recover after days of meetings.
Changes to accommodate workers with autism can be low-cost, said Dacombe, and as simple as lowering the lighting and sound to accommodate sensory issues.
And she said listening to autistic people about what they needed - and what they offered - was important.
"When we can share directly, we can share about our experiences, and that can help create more understanding."
Dacombe said acceptance for autistic people was changing between the generations. She said her grandson, who is also autistic, was wrapped in support.
"For a long time he was a non-speaker, and even though he is getting some language now, it's not always clear. But they just accept him and rally around and include him, and it's lovely to see," she said.
"Quite different, I think, from my generation."
She said improving the feeling of acceptance was simple - it came from listening and learning from autistic people themselves.