Feature Issue on Addiction and IDD

Clear-language summary

There are many stories of people with IDD who have had serious traumas, but no one paid attention to their needs. They did not get the help that other people who had the same kind of trauma received. Often, this happens because there is an assumption that a person with IDD isn’t able to express their feelings about trauma. When people do talk about past trauma, they may be told by staff not to live in the past and to try not to think about it. This actually causes additional trauma.

When no one pays attention to someone’s serious trauma, it does not go away. People with IDD may become sad, anxious, or even use challenging behavior about experiences of exclusion and bullying that happened several years earlier. This trauma can become compounded as people with IDDs experience continued exclusion and ableism.

Addiction can be someone’s way of handling the pain of trauma that no one paid attention to. In treating addiction, it is important that past traumas are addressed as part of recovery. Therapists often reject working with people who have IDDs because they claim not to be properly trained. The author points out that working with someone who has IDD should not be viewed as a specialized area, but rather, as a cultural competency that all therapists should be prepared for.

Following the death of his mother, a boy with an intellectual disability was left out of grief counseling that his sibling received. A counselor told the boy’s father that counseling wouldn’t be effective due to the disability. And so, the boy suffered in silence, and eventually began using NyQuil to take the pain away. He was eventually able to stop using it, but the pain was still there.

In high school, another boy, who had Down syndrome, endured teasing and exclusion from peers. “They laughed at me,” he told a therapist. Years later, he got a job with a good paycheck. Every Friday, he went to the bar to hang out and talk to people. He made friends and felt like he belonged. Sometimes, he bought people drinks, and sometimes someone else would buy him a drink. He started going other nights. It was somewhere he belonged.

A man in his 50s had been in a hospital for people with severe mental health issues for many years, where he had been sexually abused by other patients and a staff member. When a doctor discovered that he had an intellectual disability and needed more supports than he was getting, he was placed in a group home. He was very unhappy there. He had always relied on smoking cigarettes to be able to relax, but the staff said he smoked too much and didn’t have enough money for all of these cigarettes. They put him on a smoking schedule. He hated the schedule. He began to steal pills that the staff had over-ordered and store them secretly. He pretended to take some pills and saved them as well. One day, he took them all and almost died. He was in a coma for four days. When he recovered, he was finally able to receive therapy for the traumas he had endured.

All three of these people had addiction issues. More importantly, they were all addressing deeper issues through the use of substances. One was grieving and his grief went unvalidated by those around him. They assumed that having an intellectual disability made the loss less hurtful when, in fact, it was likely even more severe. He also had been the victim of repeated sexual abuse, which he had not disclosed to his family. This multi-layered trauma, known as complex trauma, was due to the many sources of pain in his life. Losing his mother was the final blow, and there was no one there to support him. He survived the Nyquil abuse, but it took years to get the therapy needed to address his emotional pain.

The man with Down syndrome, sadly, developed Alzheimer’s as the years progressed. He stopped being able to live independently and was moved into a group home. No one from the bar came to visit. The other patrons barely noticed when he stopped coming, despite years of drinking together. They didn’t attend his funeral.

Years of institutionalization had come to define the life of the man who was sexually abused by hospital patients and staff. He lived in fear of re-experiencing the abuse that he had endured. He was not listened to when he talked about his fears. When new staff or residents arrived, he would hide, full of fear that someone would again abuse him. His emotional pain was not seen or validated. When he expressed his pain, he was told by staff that that was the past and he shouldn’t think about it now. So, he relied on cigarettes for comfort. When those were restricted, he felt he could no longer manage his life. He attempted suicide right after a staff person told him he could not have a cigarette because it was too late and he had already smoked his daily allotment.

Another man, 45 years old, watched illegal pornography involving children after accidentally discovering how to access an illegal website. As he found out, the police monitor these sites and, when possible, they arrest people who visit those sites. Often, children have been sex-trafficked and forced to pose for these sites in ways that are damaging and humiliating to them. The man, who had an intellectual disability, did not realize this. He found a way to illegally view a certain site and he was arrested. Very quickly, his life became horrible to endure. He was in jail and then transferred to a prison for people who were not competent to stand trial. He suffered greatly.

When he was released from prison, he was on probation. Mental health treatment was ordered and he worked hard on himself. He came to realize that he had not dealt with his own history of being sexually abused as a child. He learned ways to cope with his history of abuse. He learned how to manage his impulses and began exploring what a healthy sexual relationship might be. He realized also that he was very lonely and began to make some friends and spend time with them. He learned about Hello, It’s Me, a subscription-based app designed for people with IDD to make friends and romantic connections. I was helping to write and design the content on this app and introduced him to it. He began to explore using it with hope for a consensual relationship. In addition, for the past 12 years, he has continued to engage in consistent therapy and his recent use of the app has helped him to have friends and possible love interests instead of isolating himself and going down a harmful path.

Self-Medication

In 1985, Roger Weiss and Steven Mirin did ground-breaking work published in The American Journal of Drug and Alcohol Abuse that established that addiction can be someone’s way of handling their psychological discomfort or pain. The deeper issues behind the addiction are what should really be addressed. This can be done through mental health treatment.

In 1997, Edward Khantzian showed how people who have given up addictions sometimes return to them when they are experiencing psychological stress. This is why mental health treatment is best when it is ongoing and not stopped too soon.

Meghan Mills did research in 2022 that showed that having a disability significantly increases the likelihood of having a substance abuse disorder. Her findings showed us that it was not the disability itself that created the need for substances, it was the stress of living in a society that does not support people with disabilities. This is an important distinction, but we already knew ableism itself can be a tremendous source of stress. More than 20 years ago, in an article in Science, Naomi Eisenberger and colleagues showed how being excluded or left out socially actually causes physical pain. Human beings are wired to be included. This is a part of our survival as a species.

Addressing The Underlying Issues

What needs to be done? Mental health treatment must be made far more accessible to people with disabilities. Therapists often reject people with intellectual and/or developmental disability (IDD), saying they are not trained in that work. At a conference of NADD, the National Association for the Dually Diagnosed, Brian Tallant said that working as a therapist with someone with IDD is not and should not be a specialized area requiring a particular training. Instead, it should be seen as a cultural competency, in which that therapist becomes educated in that person’s culture as they would educate themselves in the culture of any person they worked with whose life was different from their own. Many people have experienced the trauma of exclusion, bullying, and living in an unaccepting world. Therapy can support growth and healing. The underlying trauma—not just the abuse of a substance or substances but the reason behind the abuse—can be addressed in this way. Three of the men described above benefited from mental health treatment when they were finally able to receive it. It helped each of them to address the issues that were underneath their addictions. And that was what was needed all along.

The man who sought companionship at the bar never did find real friends or resolve his loneliness. We need to examine ways in which isolation, anxiety, and depression can be addressed in the disability world before they lead to addiction, and as people with disabilities recover from addiction. A system of true support and a society of real inclusion and access to mental health treatment is urgently needed.

In 2023, U.S. Surgeon General Vivek Murthy issued a report calling attention to the public health crisis of loneliness and isolation, saying it can increase the risk for premature death to levels comparable to those of daily smoking. He specifically identified individuals who experience discrimination or marginalization as those most at risk, and proposed six major areas for advancing social connection.

The disability community must actively participate in these reforms, not only to prevent the outcome of addiction, but to help people in recovery to find meaning and joy in their lives. Relationships heal us and help us to move forward.