A good life for adults with autism and intellectual disability

Posted on 29 January, 2019 by Lena Nylander

In her doctoral thesis, published more than ten years ago, Eva Billstedt demonstrated that almost one third of a group of around 100 children with autism and intellectual disability (ID) had lower intelligence as adults than they had as children. In other words, in spite of many years of school and training, their intellectual and cognitive functions were even worse than they were at the outset. How could this be? If anything, most people do better on intelligence tests as they grow up.

Friends and family, as well as personnel who knew the people in question, were asked whether they had any idea about the cause of this issue, and their answers were clear: from the moment these individuals left school, they had not been given access to any proper education or intellectual stimulation. Their daily activities were described as a means of passing the time rather than anything even remotely stimulating, focusing primarily on social activities poorly suited to people with autism. I have heard similar stories in my own clinical work – parents describing how their adult children are worse off in terms of various skills at age 30-35 than they were in their teens while they were still in school.

We all learn new things throughout our whole lives – we learn from experience since we are able to understand cause and effect. We read, watch TV, listen to radio, take classes, educate ourselves and discuss with others. Usually we do these things of our own accord, since we understand the need to “keep up” and use our skills so that they do not wither away and disappear. However, people with autism and ID do not have this same ability to understand their own needs or take initiatives. After years of training they eventually tend to learn how to follow a schedule, work on a variety of tasks during clearly defined work sessions and take scheduled breaks consisting of specific activities. Slowly and painstakingly they have managed to make progress. Perhaps they might have spent almost their entire school years learning a number of words or write their name. Many find great joy in succeeding at these things, i.e. mastering something and feeling confident in doing it. The more you learn, the more opportunities you have to find fun things to spend your time on.

Adults with autism and ID must be given a chance to get individually tailored life-long learning, with autism-adjusted education methods as well as a schedule and an approach that are aligned with those of the school. For many years now, schools have had detailed knowledge about each student’s functioning and approach to learning, and these experiences must be passed on and serve as lessons to adult services – both in terms of daily activities and living arrangements. There are many mistakes that can be avoided, just as there are many things can make learning much more fun from day one. My own experience of institutions focusing on life-long learning for adults with autism and ID is nothing but positive. The users seem to get on well and continue to learn different skills while also maintaining the skills they learned at school. I am certain that this decreases the risk of challenging behaviours and poor mental health, and from what I can tell, the professionals involved seem to enjoy getting to do this kind of meaningful work as well.

In all likelihood, adults with autism and ID will need a lot of comprehensive clarification and other everyday support measures throughout their entire lives. Even so, some efforts seem to focus on training these individuals to be as independent as possible. People with moderate/severe ID and autism rarely, if ever, benefit from independence training as their executive functions are much too poor and cannot be improved upon through training. They do not understand what independence is, and they have no concept of the fact that other people are independent or get by without any personal support. A lot of energy, which could clearly be directed elsewhere, seems to be put towards making people with autism more independent, while relatively little energy appears to be put towards helping them have any fun. Every life has the potential to be good, and there are so many things that are more important than being independent – such as knowing that you will always get the support and help that you need, as well as the support to maintain, develop and utilise knowledge and skills. A good life for individuals with autism and ID is one of minimum stress and maximum joy. Or, as a researcher and clinician in Norway put it: People with autism and intellectual disability only have one job in life – having fun!

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]