Helping Adults with Developmental Disabilities

Every individual deserves a life of dignity

There is growing awareness of the challenges that children with Neurodevelopmental Disabilities, such as an intellectual disability, autism or Down syndrome, face. But something is missing: these children with neurodevelopmental disabilities grow up, and these disabilities don’t disappear. Adults with neurodevelopmental disabilities are often ignored by society, and that includes scientists and health care professionals.

Coupled with this lack of research and support is the fact that people with neurodevelopmental disabilities are at much higher risk of developing mental illnesses like depression, anxiety and psychosis. The statistics are startling: about 45 per cent of adults with neurodevelopmental disabilities also have a mental illness or addiction – which is more than 30,000 people under age 65 in Ontario alone.

“If you can improve the quality of care upstream at the primary care level, and by working more closely with people with disabilities and their caregivers, then you can address health issues early and prevent more serious health issues from emerging.”

– Dr. Yona Lunsky, Director, Azrieli Adult Neurodevelopmental Centre, CAMH

As a result of not knowing how to offer appropriate support, these adults are more likely to end up either in the criminal justice system and/or in the emergency health care system. In addition, those with NDD and mental health issues are far more likely to be overmedicated or to turn to self-medication.

The first steps in helping those with this dual diagnosis lies in teaching those on the front line – for instance family doctors and emergency room staff. That is what the Azrieli Adult Neurodevelopmental Centre at CAMH is doing.

Directed by Dr. Yona Lunsky, this centre is built upon four pillars: Clinical Innovation, Research Excellence, Education and Training and Knowledge Exchange.

Dr. Lunsky explains, “To start to change the way we deliver care, we have to train the mental health providers of tomorrow—nurses, doctors and a range of health students. Through this Centre, we’ll actually see people trained with new skills in the next 10 years and working across the country.”

She continues, “If you can improve the quality of care upstream at the primary care level, and by working more closely with people with disabilities and their caregivers, then you can address health issues early and prevent more serious health issues from emerging.”

The Azrieli Foundation gives $16 million For Autism Research, and has a special interest in research for adults with autism.

Tips for Front-line Workers

From “Raising Awareness about Autism: Some tips for clinicians” by Centre for Addiction and Mental Health.

How accessible are mental health services to autistic people? The research tells us that mental health issues are quite common, but that mental health providers don’t feel competent to provide them. It might be okay for clinicians to say: “I can’t provide this sort of service, you need to see a specialist,” as long as there are specialists. But what happens when there is no one else to go to? Either we need more specialists, or we have to become more specialized ourselves.

CAMH is both advocating and building the capacity for more mental health specialists in autism, and at the same time improving staff skills. The starting point is learning directly from those with autism and their families.

Identify that autism is part of the presenting picture

We need to be more skilled at recognizing autism in mental health care. Not all individuals will have a diagnosis pinned to their sleeve. And if they think making this diagnosis known will prevent them from obtaining services, they will not want to share that information. It is ok to ask about autism in our assessments, especially if patients understand that sharing this information will lead to a more supportive encounter.

Recognize mental health issues early

Autism in itself should not be thought of as a mental health problem. But having autism in environments that are not accommodating can lead to mental health problems. About 70% of autistic youth have an associated emotional or behavioural problem, or would meet criteria for a psychiatric condition. These issues are also prevalent in over 50% of adults, with depression and anxiety being the most common presenting concerns. We need to talk about and promote mental health before serious issues develop. This means being responsive to family needs, making our schools safe and supportive places, nurturing friendships and preventing isolation. It is about building on strengths, and not just focusing on problems.

Be aware of overlap between physical and mental health concerns

Mental health and physical health issues overlap with one another. Long term use of psychotropic medications, commonly prescribed to people on the spectrum, can lead to physical health problems, and so can inactivity, and poor diet. Left untreated, physical health problems like an ear infection or an abscessed tooth can lead to some distressed behaviours in someone who is not very skilled at communicating their internal experiences. Mental health assessments need to recognize how closely tied the physical and emotional can be.

Treat every interaction as a therapeutic encounter

It is hard for anyone to ask for help, but having a traumatic health care experience can make asking for help a second time even harder. In our research with families we learned that parents of youth don’t seek mental health services because the steps to do so are too overwhelming, and because they hope that things might resolve on their own. In contrast, parents of adults don’t see mental health services because of how poor their experience was previously. As clinicians, we need to recognize that every interaction with the health care system is a therapeutic intervention. There are a few simple things we can do, even if we don’t feel like the expert, that can make an experience more positive and promote future service use.

Be sensitive to the senses and reduce overstimulating environments, particularly when someone with autism is under stress

Take note of lighting, sounds, and crowds. Allow for and encourage different tools to cope with sensory overload (sunglasses, headphones).

Make more time

This doesn’t mean speaking slowly or louder but means checking that what you are saying is understood and that you are understanding what is said.

Listen: you aren’t the only expert in the room

Because people on the spectrum experience the world in unique ways, they can teach us about what works best for them, and so can their loved ones.

Admit what you don’t yet know

If you have seen one autistic person, you have seen one autistic person. Mental health presentations are complicated and require knowledge of what is typical and atypical for that one individual. You might feel a pull to have a quick answer or solution, but recognizing that it will take some time to figure out, communicating that and creating a space to do so can be very validating for the person, and serve them better in the long run.