Has he ever spoken to you, his parents, about what is going on? “No, we don’t bring it up to him. We are a close family, and he would tell us if he had something to say. We don’t want to make him worry and don’t want him to be sad. He clearly doesn’t want to talk about it, so we don’t want to make his life any more stressful than it needs to be.”

With that, I told them that he would not be the first teenage boy that was hesitant to speak up about his innermost feelings and challenges to a group of people he just met, led by a psychologist he doesn’t know. I thanked them for the information but added, “We’ll see how it goes.”

The Session Begins

At the session’s outset, I ask, “Does anybody want to share anything in particular before we begin?” Without hesitation, the boy who wasn’t supposed to say a word raised his hand and began an extensive talk. He spoke about how challenging his circumstances were and the impact the challenges were having on his family. He left no doubt about how nervous he was about changes and his future.

After hearing this young man share and accept support from his peers, I asked, “Have you ever discussed any of this with your parents?” After a deep breath, he confirmed precisely what I expected. “No, I don’t bring it up to them. We are a close family and they would tell me if they had something to say. I don’t want to make them worry and don’t want them to be sad. They clearly don’t want to talk about it, so I don’t want to make their lives any more stressful than it needs to be.”

My Takeaway

The adage that silence is a virtue is only valid when there is nothing productive to say. However, if what one has to say comes from a place of truth, love, and support, then keeping silent in the name of “protection” is often counterproductive. Silence kept in order to “protect” either ourselves or others more likely than not will simply lead to loneliness, confusion, or stigma. Worst, It will keep us from truly connecting with the people we care about and who care about us.

Everyone Has Someone and Everyone Knows Someone

Everyone’s life doesn’t need to be an open book, nor should everyone be the poster child for their diagnoses or struggles. But just like that boy in my group, everyone has someone they can turn to (be it a relative, friend, or professional). The key is opening up to them. Conversely, everyone has someone who needs turning to. Asking, “Do you want to talk about anything?” can make the world of difference. If you don’t know exactly the right words, it’s okay to say, “I really don’t know what to say, but I’m here for you”

Nobody should have to face their challenges alone, but nobody can know what challenges a person has unless they are first shared. Don’t fall into the trap of that family whose parents thought their son didn’t want to share and vice versa.

To close out the story, after the session ended, I asked the boy if it would be okay if I helped him express these feelings to his parents directly. He said it would, so I brought them together. They had a nice talk.

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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.

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