“Adults with autism need to be heard and listened to”, stated one of the greatest researchers and practitioners in the field of autism – Sir Michael Rutter. Sir Michael has been witness to and an agent for change in the research and understanding of autism since its early days. Autism initially considered a psychological disorder arising from a poor mother-infant bond is now recognised as a brain development disorder. Autism includes a group of problems that affects how a person communicates, interacts with other people and makes sense of the world around them. Each person with autism is different as the difficulties associated with autism range from mild to severe. Autism is one of the most common developmental disabilities, affecting individuals of all races, ethnic and socioeconomic backgrounds. Autism is a lifelong disorder. The number of adults with autism is the same as the number of children with autism, approximately 1 in 100.
I had the privilege and honour of speaking with Professor Sir Michael Rutter as part of the interview a mentor program from the Early Researchers Association (ERA) of the British Society of Gerontology. As a PhD student in Gerontology, I was nervous and excited at the opportunity to ask Sir Michael Rutter about my research on the supportive needs of adults with autism post parental care. His research and practice has shaped our deepest knowledge of autism. What he shared with me enhances my understanding and fuels my aspirations.
Most adults with autism need support throughout their lives
“It was a lifespan approach right from the beginning”, states Sir Michael. His early research in 1967 followed a group of children who had received a diagnosis of autism between 1950 and 1958 and detailed their development and long-term outcomes. A multitude of other studies and innumerable interactions with individuals with autism weight his words, “A few do really well coping in the adult world without much in the way of help, but they are very few and at the other extreme are those who require total care.” The continuation of supportive services across the life course for individuals with autism is essential to their wellbeing. At some point in their lives most adults with autism will experience the transition out of their parents’ care, requiring different residential and supportive services. The first generation of children diagnosed with autism and many others, who only received a diagnosis in adulthood, are now entering old age and yet they remain poorly supported and under-recognised. “We don’t know very much about whether the ageing process in individuals with autism differs in any way.” How they will age with autism and the supports they need are as much a mystery, as treating them as children was 60 years ago. Regrettably to date the limited services and resources available to them as children are perpetuated in their adulthood. The need for help and support far outweighs what is currently available, was the conclusion drawn by Sir Michael and colleagues from more recent research of autism in adulthood.
“What will happen when we’re no longer here?”
This is a question Sir Michael has heard countless times. “The parents, as their autistic child moves into adult life and indeed into middle age and older are concerned, ‘what will happen when we’re no longer here?’. They have difficulty sorting out what kind of support may be available and that has not been easy”. How prepared families and adults with autism are for this eventuality is unknown. My research is exploring the future service and support needs of adults with autism, and their families as they anticipate future support planning. In order to adequately provide and plan for the future support of this new ageing population, it is important to engage with adults with autism and their family members to identify essential services and resources to facilitate a smooth transition out of parental care.
From the efforts, determination and resilience of leaders in autism such as, Sir Michael Rutter the bar of understanding and the recognition of autism continues to be raised. Sir Michael’s words, “They must be heard and what they have to say is important” echoes through my thoughts and hopefully will ripple across academic and non-academic settings too so that the needs and aspirations of adults with autism will be realised.