Dual Diagnosis in the Intellectual and Developmental Disabilities (ID/DD) Population

We look for patterns in our surroundings.  Cave men looked for patterns of behavior in the animals they hunted.  Our understanding of the solar system was from those who looked for patterns in the change of the moon and the night sky.  Successful investors look for the patterns in the economy to predict stock market performance.   From earliest man to present day, problems are solved, solutions theorized and opportunities are found by those who see the patterns.

Health care providers are no different.  It was through seeing patterns with signs and symptoms in a variety of patients that the course of similar diagnoses were defined and with that came the potential for interventions and treatment.  Like symptoms received like diagnoses and thus like interventions.  False assumptions were drawn in some cases.

What we now know as Autism was diagnosed as childhood schizophrenia as recently as the 1930s because their interactions with their environment and seeming lack of attachment was seen as similar to those of the adult with schizophrenia.    The child with seizures, unmedicated, had brain damage after periods of unmanaged seizures and lack of oxygen to the brain resulting in early institutionalization of any child with epilepsy.  Labels of lunatic, feebleminded, deranged, idiot and dunce were used interchangeably.   Those with severe mental illness and ID/DD often received the same labels and treatment.

It has been in our lifetime that the greatest advances in understanding both mental illness and intellectual and developmental disabilities (ID/DD) have been made.  There are new assessments, diagnostic testing, advances in medications and interventions as well as understanding of genetics, neurotransmitters, brain structure and function and so much more that impact these areas of study.

The term “dual diagnosis” has primarily been used for individuals with both mental illness and substance abuse but the term is increasingly used for another population;  those with both  ID/DD and mental illness.  Individuals with developmental disabilities are as susceptible to mental illness as the general population and some would theorize the risk is even greater.  Social isolation can be a risk factor for misuse of drugs.  Despite movement away from institutionalization, for those with ID/DD social isolation is still significant.  Individuals with autism are at higher risk of substance abuse than neurotypical individuals.  Language deficits, lack of understanding social norms, and misinterpretation of symptoms are a few issues that can contribute to a delay in diagnosis for the individual with a cognitive disability when early signs of mental illness present.

Even once a diagnosis is obtained, diminished understanding of the illness and compliance with medication routines contribute to exacerbations and repeated acute episodes requiring intervention.   The vast majority of individuals with intellectual disability are dependent on public assistance for medical care.  Psychiatrists and other providers have waiting lists for those on Medicaid and thus another factor in delay of diagnosis and intervention.

When faced with a label of “dual diagnosis,” a life that is already challenged to be included is met with one more factor contributing to social isolation.  As a community, from funders, to first responders, primary care providers, clergy, neighbors and family we need to be aware of the issue.  Is access to primary care all that it could be?  Are treatment settings designed for sensory issues and communication challenges of those with disabilities?  Are providers trained to recognize symptoms and consider the diagnosis of mental illness rather than assume cognitive decline?  Is there adequate support to assist with the client’s understanding and compliance with the treatment plan, remembering illiteracy may be an accompanying condition?

Written by: Patti Hays, CEO of the AWS Foundation in Fort Wayne, Indiana.  AWS Foundation’s mission is to help children and adults with enduring intellectual, developmental and physical disabilities live as independently as possible, be included in the community and function at their highest potential.


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