It’s an age-old debate: Which came first, The Chicken or the Egg? You can find various arguments for either side, but does it really matter?
In my line of work, I often hear a similar question. Did the developmental delay (Autism) cause the mental illness or did the mental illness cause the developmental delay (Autism)? But individuals diagnosed with both a mental illness and Autism experience a unique set of symptoms that overlap and collide with one another at any given time. And all these specific symptoms or behaviors can impact the day-to-day life of an individual with a dual diagnosis. So again, my question is: Does it really matter?
Unfortunately, it seems to matter to some; to the funding sources that pay for the treatment. As a professional in the mental health and developmental disabilities field for over a decade, I have been witness to countless battles between the two departments regarding the best course of treatment and who should have to pay for it. Back and forth the agency leaders argue the best treatment options–this or that–and in my experience, there is never an argument for both.
Individuals with dual diagnoses experience a unique set of symptoms and often face challenges every day that are a result of either/or both diagnoses. Picture this–a five-year-old is enrolled at his local elementary school and immediately is the talk of the teacher’s breakroom. The staff discuss the quirky things he says or does, his inappropriate and unexpected comments shouted during classroom activities, his inability to manage his emotions which leads to anger outbursts or running from the classroom, the lack of social awareness or ability to interact with his peers, and the list goes on and on. And it is all the time, there seems to never be a moment that staff is not dealing with some behavior or another with this child.
Let’s look at this from another angle, typical characteristics of individuals diagnosed with ASD include quirky behaviors, unexpected comments and questions, emotional dysregulation, and social skill delays. Now, many of the same characteristics are found with mental health diagnoses in children. The same behaviors can be described as impulsive, inattentive, angry, defiant, shy, or mean. These descriptions are often used to describe kids with ADHD, Anxiety, PTSD, and/or Depression.
Now you tell me, mental health or Autism? I would argue that the degree to which these symptoms are exhibited would indicate both diagnoses are present.
As this young man grows up, the behaviors he displays continue to impact his daily life, his interactions with others, relationships with peers, family members, etc. His family decides to seek professional help and treatment for their child with the hope that he is able to learn skills that will eventually improve his quality of life. The first stop is the community mental health center, where he obviously qualifies for services based on the behaviors reported during the intake, because they are symptomatic of mental illness, right? Shortly after he is assigned a case worker and therapist, it is determined that due to his intellectual delays and communication barriers, traditional mental health services will be ineffective. The treatment team at the mental health center recommends services with the developmental supports department.
So off they go to another intake with new people to get to know, different expectations to learn, and different treatment options and services. The assessment is completed and he has met the eligibility requirements for services. Of course, he has, the symptoms described are obviously due to his ASD diagnosis. And shortly after services begin, the treatment team determines that due to the unsafe behaviors and level of aggression demonstrated, developmental supports are not appropriate as a treatment option. The team recommends mental health services.
And the years go by and the cycle continues back and forth between departments seeking services and treatment that he deserves and is entitled to. This young man is unable to maintain any sense of consistency with services and is unable to learn and generalize skills to help me manage his symptoms. As he gets older, some of the behaviors related to mental health begin to change, becoming more intense and at times very unsafe. Typical treatments are ineffective due to his cognitive impairments and intellectual delays, developmental supports are not as successful as hoped due to the impact his maladaptive behaviors have on day-to-day functioning.
Transitioning into a young adult poses a different set of issues; not new, but different. Resources are limited for young adults with ASD that wish to live outside the family home due to a lack of placement options, staffing issues, etc. What are the options available for a young person with a dual diagnosis? Traditional group homes are not equipped to manage the behaviors associated with mental illness and living independently is not an option due to the high levels of supervision needed at all times. So once again, the question is where does this individual fit?
The lack of support and services available to individuals and their families that are dealing with dual diagnosis is frustrating, to say the least. I can’t imagine how it must feel for a parent or an individual to be told over and over again that they need to find treatment elsewhere because whichever agency is not able to manage the complexity of his or her case. To not have options for housing that can not only keep a person safe but provide opportunities to continue to grow and learn is devastating. Our community of providers, the available resources, and the entities that fund treatment need to acknowledge this issue and find a solution rather than continue to pass the buck. We need to do better, as a society, as a whole.
To all the parents of individuals that have spent a lifetime trying to navigate this bumpy road of treatment; the parents that feel helpless, hopeless, and defeated; the parents that dread the ringing of the phone because they know it will be someone calling about their son or daughter and not with good news: Please know that there are people in this world that recognize the issue and will fight with you to ensure that children of our future are provided with the services, resources, and treatment they deserve. Please know that there are people in this world that look at your child and see the strength they possess, the hard work they put into life, view their quirky personalities as endearing, funny, and creative, and know that the unexpected, and at times inappropriate, questions or comments come from curiosity and the desire to understand, that relationships are hard for them but so worth the time and effort put in, and understand that sometimes the world is just too much them.
Whether it was the chicken or the egg that came first, it does not matter! Treatment and services should be available and provided as individuals need, we should be collaborating to provide the most successful and effective treatment possible, not pushing the responsibilities to others. We can do better!