Transitioning into adulthood can be challenging for anyone, but for autistic individuals, it often comes with the additional hurdle of a sudden decline in support. Most services for autistics are centered around children, with limited focus on what happens after their eighteenth birthday – a reality that researchers at The Neuro (Montreal Neurological Institute-Hospital) are aiming to change.
"Autistic individuals face similar goals and challenges transitioning to adulthood as their neurotypical peers. However, they often need extra help and resources to make this phase go smoothly,” says Julie Scorah, a neuropsychologist at The Neuro’s Azrieli Centre for Autism Research (ACAR). “As healthcare providers and researchers, it's important for us to focus on pinpointing these tools and making sure they're easily accessible when needed."
Typically, families are the primary support for autistic individuals, and they often lack necessary resources, especially financially. Some specialized education centres offer training and assistance around jobs, independence, and daily life skills, but these services are not widespread and leave many without comprehensive support.
Building relationships and entering the workforce
“Understanding dating, relationships, and sexual orientation can be difficult for autistic individuals,” Scorah says. “Skills like asking someone out or going on dates can be elusive, and there just aren’t enough services to help in developing them.”
In addition, autistics often encounter barriers to finding employment that aligns with their strengths and accommodates their needs. While research has proven the significant contributions autistics can make to the workforce, their potential is not always recognized by employers.
“There is a general lack of understanding and acceptance of autism in the professional sphere, which affects individuals’ access to fulfilling and supportive work environments,” Scorah explains.
Addressing these challenges requires not only increased societal acceptance but also the development of more comprehensive, lifelong support.
Changing perspectives on autism
In recent years, there has been a notable shift in the way autism is understood.
Historically, autism research was guided by the priorities of researchers. The current approach involves autistics and their families from the start. Encouraging individuals to share their wants and needs helps guide researchers towards topics that resonate and have a meaningful impact.
“We’re actively working to improve research collaborations with the people in the autism community, for example through the Azrieli Neurodevelopment Clinic,” says Myriam Srour, Associate Director of Clinical Research at ACAR.
“It's not just about helping science move forward,” Srour adds. “It's about giving our patients, their families, and community members an opportunity to be part of something bigger – and take an active role in accelerating discoveries that directly benefit their quality of life.”
The Azrieli Neurodevelopment Clinic is an integrated research clinic located at The Neuro that provides clinical services for individuals aged 16 and older. It is the only clinic in Quebec focused primarily on adults with neurodevelopmental conditions, including autism. The clinic also offers specialized care for individuals with additional neurodevelopmental, behavioural, or neurological conditions, such as epilepsy.
In addition, the Montreal Children’s Hospital, another facility of the McGill University Health Centre (MUHC), offers online resources to help caregivers with neurodivergent children transition to adulthood.
“There is growing awareness of the need for lifelong support, and recognition that there needs to be a federal framework that takes this into account,” says Scorah.
The federal government is taking steps towards a national autism strategy, acknowledging the need for a comprehensive policy surrounding autism. At the same time, the neurodiversity movement, which champions the social model of disability over the traditional medical model, is challenging conventional viewpoints and promoting a more inclusive approach.
Both this shift in perspective and accommodation of diverse needs are crucial to a future where autistic individuals can thrive – at any age.
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This article was originally published in the Summer 2024 edition of Montréal en Santé.
