What do you see when you think of autism? Up until recently, I would picture early intervention with children. But what happens once those children grow up? While early intervention and services for children are important, the needs of adults living with autism spectrum disorder (ASD) have gone somewhat unnoticed. Children with ASD grow up to be adults with ASD, and continue to have needs that require supports and services.
What is autism spectrum disorder (ASD)?
- ASD is a life-long brain disorder that affects the way a person communicates and relates to others and the world
- It can affect behaviour, social interactions and ability to communicate both verbally and non-verbally
- It can involve repetitive behaviours and restricted interests
- The degree to which each person experiences these challenges is different
- ASD affects people of all ethnicities, across geographical and socioeconomic boundaries
Speaking with Margaret Spoelstra and Katharine Buchan of Autism Ontario brought home the reality that adults with ASD are often forgotten. Part of the not-for-profit organization’s efforts involve advocating for the support and services these individuals need to lead fulfilling, meaningful lives.
They highlighted several major challenges. Most adults with ASD live with their parents, since there is a lack of support to find housing. This creates additional financial and emotional strain especially as their parents age into their 60s, 70s and 80s, facing their own health issues while being the primary caregivers for their adult children.
Mental health is another major issue, as people with ASD often experience anxiety, depression or other mood disorders. Healthcare professionals are not commonly trained to recognize these disorders in people with ASD, as they may present differently than in people without ASD. This means that mental health issues may not be diagnosed and treated in a timely way. Diagnosing and treating other types of illnesses may also be more challenging, as a person with ASD may have difficulty describing what they’re experiencing to their clinician. The wide range of expression of ASD adds to this challenge.
People living with ASD benefit from meaningful activities to engage in their communities, however these programs are often missing. Standard community services may be difficult to access due to financial barriers and because the service providers are traditionally not trained in working with people on the spectrum. Adults with a developmental disability can apply for funding programs, however waiting lists can be long and there are some eligibility restrictions. To help bridge this gap, Autism Ontario has a ‘Building Brighter Futures’ fund, where individuals can apply for funds to help them be involved in their community, whether through recreation, professional supports, or another solution that will help that person connect to their community. Another program that assists with skills development, particularly for the transition to adulthood, is ‘Transition to Life’. The program offers coaching, social experiences and job search preparation to prepare for greater independence.
Many individuals with ASD are unemployed, as standard hiring and recruitment practices filter out people on the spectrum. However, the skills needed to do well on an interview are not always the same as those required to do well on the job. Specialisterne Canada is a not-for-profit organization that connects people with ASD with meaningful employment. They partner with businesses to identify jobs they may be able to fill. Instead of a traditional interview, Specialisterne brings in potential candidates to a workshop, where they can assess their on-the-job skills in a relaxed environment. From this workshop, a candidate profile is created and sent to the business looking to hire. The guidance does not stop there, with training and job support provided to both the employee and the employer. Through this new approach, people with autism are finding meaningful employment and companies are gaining loyal, dedicated employees who bring a unique perspective to problem-solving. The accommodations that the businesses make for these new employees are small, and rely on open communication. For instance, if an individual does not want to shake hands because of sensory challenges, this can be communicated and accepted, and does not affect their job performance. Opening up the conversation around communication and management practices also has the ripple effect of improving satisfaction for employees without autism too.
While there are many challenges still ahead, people are making a difference with programs and approaches to improve support and services. As Katharine told me, it would be a loss for society if we don’t include people with ASD. Now it’s our challenge to create inclusive communities and workplaces, so that fulfilling and meaningful lives can be a reality for everyone.
Province of Ontario Neurodevelopmental Disorders Network
Forgotten: Ontario Adults with Autism and Adults with Aspergers
Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems
Watch this video to learn more about autism spectrum disorder
By: Anya Cyprys, OBI Intern, Outreach
September 09, 2012
New device stimulates the brain to prevent seizures At Toronto’s University Health Network – one of more than 25 organizations involved in the pan-Ontario Epilepsy Discovery Project – researchers are developing a wireless, implantable device that can predict and prevent seizures.
OBI and Brain Canada
May 11, 2012
The Ontario Brain Institute congratulates Brain Canada for establishing “The Canada Brain Research Fund”.
Addressing Dementia Research And Care: Can ‘Big Data’ Help?
October 09, 2014
We live in a world of big data which can serve as a particularly useful tool for health systems to gain a better understanding of patients and their needs across large populations. With appropriate use, big data has the potential to advance health research and help healthcare providers personalize care; however, this has been largely […]