Over the last several decades, the realities of Autism Spectrum Disorders (ASD) have shifted. More individuals are being diagnosed, some present complex challenges/multiple disabilities, and others live increasingly complicated lives. Once thought to be a rare disability, ASD is now projected to impact 1 in 54. And the current reality is that a percentage of individuals on the spectrum, perhaps as high as 70%, experience a co-occurring mental health issue, including anxiety, depression, oppositional defiant disorder, bi-polar and others. Some even receive multiple mental health diagnoses. Finally, reflecting a societal shift, a population of individuals are living with grandparents or other guardians because of parental addiction, incarceration, or other life challenges. Others are living in poverty.
The current state of ASD teaches us that we must intentionally explore each person and all aspects of their life. There is no recipe or cookbook for what works for all. And in truth, multiple labels have limited utility. Instead, they can muddy the waters and cause us to truly miss the core meaning of the individual’s actions and reactions. We also must acknowledge and recognize the role of trauma and stress in an individual’s life. A manifestation of this stress and trauma are the presence of challenging behaviors. Acknowledging the role of stress and trauma is important when looking for the underlying conditions surrounding problematic behavior.
Educational neuroscience examines the role of constant stress in an individual’s life. This stress can be the result of the natural stress caused by coping with life, their disability, or society’s response to the disability. Individuals on the autism spectrum point to “masking” or trying to hide their disability as a major source of stress. Other sources of concern involve sensory stress, stressors of certain demands, and stressors caused by the various characteristics of a disability (e.g., inflexibility, need for perfectionism). Ignoring the impact that stress can cause on an individual also discounts the supports and resources that may be available to them to counteract their stress.
Sources of stress can involve life circumstances as identified through the Adverse Childhood Experience (ACE) Questionnaire. Stress and trauma can also be caused by bullying, previous experiences in schools/programs, behavioral approaches used (time out, restraint), staff interactions, events in the community and many other factors. When individuals are in constant stress, it raises cortisol levels and changes neurology. This change in neurology makes rational thinking more difficult and reactivity more prevalent.
In order to effectively assess and plan for individuals, we must look at the whole person and all potential factors (biological, social challenges, medical conditions, mental health conditions, etc.). Below are just a few strategies that may help when interacting with and supporting someone with co-occurring mental health and ASD:
- Schedules should be defined, displayed, and followed. Individuals on the spectrum and those with co-occurring mental health issues may find comfort in routines and predictability. Recognizing that change happens, intentionally prepare individuals for potential shifts in staff, programming, events, or life conditions.
- Movement is key. Providing movement breaks throughout the day can both increase engagement and regulate the brain. Explore options such as yoga and a range of exercises. Many fitness and movement activities can be made accessible, so keep an open mind and get creative.
- Acknowledge and address the sensory stress many feel. Providing fidgets, weighted blankets, weighted lap pads, specialized seating, or a calming area can provide the person with coping strategies and help them to emotionally regulate.
- Strategies associated with Zones of Regulation® have been beneficial in schools to assist all students in better understanding their emotional level as well as how to manage those emotions.
- Perhaps most important, those of us who interact with these individuals must strive to remain emotionally regulated. If we yell, or are anxious and upset, folks on the spectrum will be triggered by our own emotional level. Stay calm, even in the heat of the moment.
- Talk therapy may not be the most effective for all. Instead, identify skill deficits (self-control, self-management, emotional regulation) and then teach the individual a different way of responding. Be ready to model, allow for practice and provide positive feedback when the individual demonstrates the skill.
- Individuals on the spectrum benefit from clearly understanding expectations and rules. Predictability is key. All should be presented visually, followed, and revisited to measure effectiveness.
- Each person needs to have a champion in their corner that they can trust. That is an important role each of us can play by focusing on the person’s success and building rapport.
- Developing relationships with the individuals we support is essential, and at times can be challenging. Do not give up. Instead, think outside of the box by discovering the individual’s interests, strengths, and dreams.
- Individuals should be engaged in meaningful curriculum, work and activities that enhance their quality of life. Again, focus on all aspects of the person.
Some individuals may need additional counseling, psychiatric or medical support. In some communities this support is challenging to obtain. For example, finding a long-term counselor that the individual can build a trusting relationship with can be difficult. Often there is a high turnover of direct support personnel and staff in counseling centers. Within their states, families and individuals should network with both their developmental disability and mental health agencies to find options. Working across systems tends to open options that are not available when we silo services based on labels. The needs of people do not fit neatly into boxes. It is increasingly important for agencies to recognize the concept of universal design and develop systems based on need and not labels.
Pratt, C. & Rowe, B. (2021). When mental health and ASD co-occur: Realities, strategies and challenges. Retrieved from https://www.iidc.indiana.edu/irca/articles/when-mental-health-and-asd-co-occur.html