Designed by Autistic adults and for Autistic adults, a new survey aims to understand the needs of the Autistic community in Canada.
McMaster University researchers from the Offord Centre for Child Studies, in collaboration with the Autism Alliance of Canada, are conducting a survey of Autistic adults aged 30 and over to help fill in significant knowledge gaps and allow Autistic adults to share their lived experiences. The survey, funded by the Public Health Agency of Canada, contains 96 questions spanning 11 areas of life and these results will be used to inform a National Autism Strategy.
“This project couldn’t come at a better time,” said lead project investigator and Autistic self-advocate Dr. Mackenzie Salt. “There’s very little information out there on Autistic adults and what they go through. This is an opportunity to try and fill some of those gaps, inform policymakers, and let the Autistic community have a say in policy that will be affecting them.”
Dr. Salt said the 30-minute long national survey is the first of its kind, as there has been a recent shift into government-funded autism research that looks at lifespan approaches and adulthood.
“There wasn’t funding for work on Autistic adults, it was mostly devoted to children,” he said. “Autism is a lifelong condition. Autism doesn’t go away when you hit 18-years-old. The challenges may change and the experiences of the Autistic person may change but it doesn’t mean that [autism] goes away – the challenges are different and we need to be prepared for that.”
Project supervisor and Offord Centre Director Dr. Stelios Georgiades agreed and reinforced the importance of identifying the needs, strengths, and experiences of Autistic adults.
“When the needs are so high in the community, you need all hands on deck,” Dr. Georgiades said. “You need government agencies to come together with community agencies and academic research teams.”
When it comes to autism policy and support, Dr. Salt addressed equity and said one size does not fit all.
“We can’t just throw money at the problem and hope it will go away. There needs to be an infrastructure around funding, different people need different amounts of funding.”
The national survey was co-designed alongside 10 other Autistic lived-experience consultants with varying genders, abilities, and ages, including input from non-verbal Autistic adults. The survey asks questions on diagnosis, physical and mental health, financial stability and status, housing, autonomy, social and personal relationships, and the prioritization of needs to name a few.
“This survey is custom-made to answer the questions that need to be answered but also to let people have their say and explain their experiences,” Dr. Salt said. “There are lots of different areas and in doing so, it creates a more comprehensive survey.”
To reach a target number of 2,000 survey responses, Dr. Salt knew accessibility had to be at the forefront of the conversation. Not only are virtual surveys available, but phone surveys and paper surveys will allow Autistic adults with sensory accommodations or limited access to the internet to participate and make their voices heard.
“In designing the survey, we’ve made sure to leave lots of open answer questions too,” said Dr. Salt. “We want to get as many responses as possible.”
After the survey collection period ends, another phase that engages with Autistic adults in virtual focus groups will begin.
Since starting his post-doctoral fellowship with the Offord Centre several years ago, Dr. Georgiades said that his student, Dr. Salt, approaches research in a very pragmatic and meaningful way.
“He is a daily inspiration for me,” said Dr. Georgiades. “He combines a collaborative approach with his lived experience of autism and a very innovative way of doing research that is impactful in real life. Mackenzie has taught us all that it’s important to talk to Autistic adults themselves.”
Dr. Salt was diagnosed with autism when he was 13-years-old. He encourages Autistic adults to continue advocating for themselves.
“Being diagnosed helped me learn more about me,” he said. “If you need help, ask for help. Talk to people who will listen and make sure your voice is heard. Know that your challenges may be unique to you but the challenges may not be unique in and of themselves. People may go through something related, you may be able to help each other. No one should be suffering in silence.”
The survey closes on August 18th, 2023. If you are an Autistic adult (with or without a formal diagnosis), aged 30 or older, and would like to share your needs and experiences with us, please click on this link for more information: https://www.autismalliance.ca/adult-needs/
Article written by: Kathryn Fraser
