For many, many years, people believed that people with intellectual disability (ID) could not have mental illness. Some early literature even suggests that people with ID don’t have feelings like the rest of us. Changes in mood and behavior were seen as part of the disability, not as symptoms of mental illness.
In the early 1980s, Steven Reiss coined the term “diagnostic overshadowing” to describe this phenomenon. He noted that intellectual disability was such an obvious and important characteristic that it overshadowed professionals’ perceptions to the point that they couldn’t see their client’s signs of emotional distress and illness. Those early prejudices survive in the lack of training for therapists and the lack of availability of therapeutic services today.
If you haven’t already been working with people with intellectual disability (formerly called mental retardation), you may not know these facts:
- From one to three percent of the American population has intellectual disability. In my two-county area of 270,000 residents, for example, that means that over 2,700 people have ID.
- 85 percent of those with ID are on the mild end of intellectual impairment and can indeed take advantage of talk therapy if the therapist adapts to their needs. Again using my area as an example, about 2,300 people are mildly cognitively impaired.
- Depending on the study, people with ID are three to four times more likely to have a concomitant mental illness. Sadly, living with a disability is difficult to traumatizing. Personal issues include limitations in coping skills, confusion around social interactions and limited verbal ability. People with ID often have few friends or social supports. Other people aren’t always kind.
- People with ID need our help like anyone else who finds life challenging or who is hurt by others. Returning to my example, using the prevalence statistics, there are probably over 1,000 people within an hour’s drive of my office who could benefit from therapy.
Few, if any graduate programs in psychotherapy or social work offer any courses or specializations in working with those with intellectual disability. That, plus the fact that many professionals continue to believe that people with ID can’t have mental illness, means that people with ID are among the most underserved populations for their mental health needs. Developing the skills and confidence to work effectively with this population can give you an important niche for your practice.
The same therapeutic skills are required to provide help and support to those with ID as are needed to support the typical population. To be effective, though, the therapist does need to make some adjustments in how the work is done:
- The usual once-a-week format of therapy may be challenging. For many people with ID, there is “now,” “before now” and “later.” Ask them what has gone on in the past week, and they are likely to focus on what happened in the last hour or so. For that reason, it’s often helpful to have someone who knows the person well (a family member or staff) come into the session for the first 10 minutes to summarize the past week as a reminder of the issues that may need to be addressed and the progress that has been made.
- Trust is a huge issue. Many people with ID have been abused, bullied, and disrespected by others. They understandably have trust issues with any new person. It’s important to spend far more time than usual in helping the client become comfortable with the environment of the therapy office and with the therapist.
- Therapy with people with ID requires more teaching and direction than many therapists are comfortable doing. They need more repetition and reminding for new ideas to stick.
- The language of therapy also has to change. People with ID often are very, very concrete. Abstractions and metaphors confuse them as they often take them quite literally. Ask as person what “Don’t cry over spilled milk” means and he is likely to say something like “I don’t cry. Someone has to clean it up.” I’ll never forget when I expressed my condolences to a client for the “loss” of his father. “He’s not lost,” said the client. “He’s in the cemetery.” Our language can be simplified and made more concrete without being childish or simplistic. Frequent check-ins to make sure the client really understands what is being discussed are essential.
- On the client’s side, verbal language may be one of his or her weakest skills. Receptive language is often far more highly developed than expressive language. It’s important not to underestimate what someone understands. It’s helpful to have a repertoire of action techniques like role playing, art therapy techniques or the use of objects or figures to help the client show us what happened.
- Processing may be delayed as well. Conversational interchange needs to slow way down to allow the client to take in the information, to think about it, and to respond.
- People with ID often have learned to please others as a way to get along. They may act as if they understand when they don’t have a clue what we’re talking about. One therapist I know talked at length with his client about the fact that masturbating in public areas of the home isn’t appropriate. After about 10 minutes of this, he realized the client was looking at him blankly. Although he’d been nodding and agreeing through the whole discussion it turned out he didn’t understand the words “masturbation” or “appropriate.” My colleague realized he had to start the conversation over.
- For some therapists, the level of affect from people with ID can be overwhelming. People with ID often express their emotions in a big way. Those with verbal limitations are likely to act out their feelings by pounding on the chair or stamping their feet or yelling. With patience and tolerance, they can learn to express themselves differently. More importantly, they can learn that their feelings will be heard even if presented in a more modulated way.
- It often is helpful to assign homework that is very concrete and specific so that an intervention is reinforced between sessions. If the client agrees, it often is helpful to have a staff or family member join you for the tie-up of the session and to review the “homework” and how to provide support for the therapy throughout the week.
Many of these considerations are the same or similar to what a therapist would do with a child in therapy.
But — and this is a very big but — it’s essential to remember that these people are adults with adult feelings, adult needs, and adult experiences. Changing pace and language doesn’t mean talking to them the way we would talk to a child or assuming that these clients don’t have the ability to take in what has happened to them in their lives. They deserve the respect of being treated as an adult, just as we would treat any other adult who has come to us for support and care.
There is a desperate need for professionals to take seriously the mental health needs of people with ID. Do the math for your area to discover just how many people may be in need of services. Then see what resources are available to serve them. Chances are that there is an enormous gap. If you are looking for a way to make an important contribution to the services available in your town or city or you have been searching for a niche to help you stand out from the professional crowd, consider learning how to tailor therapy to this unique and rewarding population.