Why Does a Mental Health Organization Need an Intellectual Disabilities Advisor?

When I was asked to serve as the Intellectual Disabilities Advisor for Refuat Hanefesh, my initial reaction was, “Why? Why would Refuat Hanefesh, an organization focused on destigmatizing mental illness in the Jewish community, need an Intellectual Disabilities Advisor?” After all, intellectual and developmental disabilities (ID/DD) are not mental illnesses. I realized, though, that this role in this organization could serve two equally valid yet somewhat contradictory purposes. First, it can help people who contact the organization mistakenly; second, it can help people who mistakenly do not think to contact the organization.

Why would someone with an ID or DD mistakenly contact this organization?

Let me explain. ID/DD are not forms of mental illness. Grouping individuals with ID/DD along with those diagnosed with mental illnesses has caused harm in the past to both groups. It was this confusion that led people with Down Syndrome or cognitive disabilities to often find themselves in psychiatric wards. Instead, they should have received the educational services and developmental supports they actually needed to reach their potential. In the mid-twentieth century, this confusion led well-intentioned but misguided scientists to view Autism in children as a reaction to trauma and to blame parents for their childrens’ development not being typical.

So, one reason to have an Intellectual Disabilities Advisor is to provide a resource that can point parents or individuals with ID or DD in the right direction and connect them with a more appropriate venue to have their needs met if they inadvertently contact this mental health organization for support.


Why would someone with an ID or DD mistakenly NOT contact this organization? 

At the same time, because people with ID or DD are just people; they too can battle mental illness. Quite often, however, people mistakenly attribute the symptoms of a person’s mental illness to the person’s ID or DD diagnosis (an occurrence referred to as, “Diagnostic Overshadowing”). For example, a typically developing teenager who suddenly becomes withdrawn and stops going out with her friends may be suspected of having depression, while the same symptoms arising in a teenager with Down Syndrome might be viewed as her becoming “stubborn” (although it should be noted that the idea that stubbornness is a characteristic of Down Syndrome is in it of itself an unfair stereotype). Similarly, social withdrawal or a decrease in communication may be seen as signs of potential trauma in an otherwise typically developing child but as “par for the course” in a child with Autism.

Having a person who specializes in ID as a mental health resource should serve as a reminder that individuals with developmental diagnoses can also experience depression, trauma, anxiety, or any other mental health need and that these needs should not be overshadowed by a person’s primary diagnosis.


In a sentence

There is some overlap in both ID/DD and mental illness. Perhaps the biggest is the need to fight against the fantasy-based stigmas associated with both. However, ID/DD are not mental illnesses, but people with ID/DD can still experience mental illnesses. Therefore, I and other people in the field can help identify which characteristics belong to which diagnosis and how to best address a person’s developmental and mental health needs. I hope that we will be able to help everyone, regardless of level of ability, lead full and satisfied lives.


What do you think of Stephen’s take on Intellectual Disabilities Advisor involved in mental health? Join the conversation in the comment forum below.


Stephen Glicksman PhD
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