By Dr. Yona Lunsky
Pictured above: Dr. Yona Lunsky (right), Director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health, and Dr. Yani Hamdani, Clinician-Scientist at the centre.
With September’s Fetal Alcohol Spectrum Disorder Awareness Month now behind us, we celebrate October’s National Autism Awareness Month and look forward to November’s National Down Syndrome Awareness Week – but what does that mean? How should we approach these opportunities to make the most of them?
These months are reminders to everyone who engages with social media that there is still so much to learn about each of these neurodevelopmental disabilities, and so much more we – and that “we” includes “me” – can do as individuals and communities. It’s a time to remind ourselves of common themes.
Stigma is common. People with these disabilities, and by extension their families, encounter stigma from the moment of diagnosis. Ignorance, misinformation and perhaps fear leads people to sometimes say and do things that are hurtful and exclude people from opportunities. Stigma may impact how services are (or are not) accessed, which can impact health and mental health.
Navigating the maze is exhausting. It is not easy to find the right services, whether case management, respite, educational programming, physical health or mental health supports. Many services are found too late, making situations worse. Many services have to be paid for out of pocket, which is a huge barrier. And often the people providing the services do not know how to tailor care to the unique needs of the people they are helping. This leads to care gaps and preventable problems, along with a general sense of hopelessness and isolation.
Of course, people with childhood disabilities grow up to be adults with disabilities. Services and supports are needed across the lifespan and the same level of expertise and availability of services is needed for adults with childhood onset disabilities as is needed for children. This is a significant gap for fetal alcohol syndrome, Down syndrome and autism.
At CAMH, we believe strongly that mental health is health – for everyone. Yet, there is a shortage of mental health supports for people with neurodevelopmental disabilities and their families. Too many of the crises that occur are connected to poorly recognized and inadequately addressed mental health concerns. The type of concern, the age at which it develops, how our treatments need to be modified – some of that may vary but the broad issue is the same.
We must promote mental health for people with neurodevelopmental disabilities and their families. We must be aware of “diagnostic overshadowing,” the mistake of seeing symptoms of mental illness as the disability itself. Mental health professionals need tools to tailor their assessments, and modify their treatments. And mental health researchers need to build the evidence base of what works.
So, what can each of us do, especially during Down syndrome and Autism awareness weeks and months? Continue to learn! There were plenty of fantastic posts as part of September’s Fetal Alcohol Spectrum Disorder Awareness Month, both here in Canada and abroad. While much of it focused on how to prevent FASD, there were also great reminders about how to support people with this condition, in childhood and adulthood.
We are bound to see the same quality and quantity of information for Down syndrome and Autism awareness weeks and months. Read what you can, watch videos, have conversations. Absorb the information and take advantage of the opportunity to build your awareness and move toward greater acceptance.
Dr. Yona Lunsky is Director of the Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health.