According to the World Health Organization, autism spectrum disorder (ASD) begins in childhood. One in 160 children worldwide has been diagnosed with autism. But since autism was only recognized as a disorder in 1980, there are many adults who went through childhood without a diagnosis and without help.
Now, a new study thought to be the first of its kind examining an autism diagnosis exclusively in middle age, found that adults diagnosed with autism in their fifties grew up believing they were ‘bad people’, ‘alien’, and ‘non-human’. The study is published in the Journal of Health Psychology and Behavioural Medicine.
“I had conducted research with children with ASD, and it occurred to me that there was little research that investigated ASD from an adult perspective,” study author Dr. Steven Stagg of Anglia Ruskin University in Cambridge, England told us. “When we initially looked into this, there were thousands of research papers studying children with ASD and only three investigating adults. There is beginning to be a shift in emphasis in this area, and more researchers have started to ask questions about adulthood and ASD.”
Nine adults between the ages of 52 and 54 were interviewed for the study and told researchers that as children, they didn’t have any friends and didn’t know why people treated them differently than others. As adults, they had been treated for anxiety and depression but doctors didn’t think to look at underlying autism.
“Initially, the study was intended to investigate the lives of older adults with autism, as this tends to be an understudied population,” Dr. Stagg told us. “The focus of the study changed as we realized our participants had received a diagnosis later on in life. Given that autism was not officially classified in the Diagnostic and Statistical Manual of Mental Health Disorders until 1980, it is likely that there is a population of undiagnosed adults who were born before knowledge of autism came to prominence. I was then interested in how the diagnosis had been experienced and whether or not it was a positive experience.”
While some children and adults with autism can live independently, others require support throughout their lives and many have co-morbid diagnoses such as anxiety, depression, and Attention Deficit Hyperactivity Disorder.
“We wanted the research to be guided by the participants at this stage, so our approach was a theoretical,” Dr. Stagg told us. “To allow the participants to have a voice, we chose a qualitative research design.”
Dr. Stagg and his team of researchers found that there were some key themes common to all the participants. The signs of autism had always been present but had not been picked up on when they were children. As children, they had no friends and experienced difficulties when routines changed.
“One participant was removed from her class at school and preferred to work alone in the library,” Dr. Stagg told us. “They had all grown up thinking of themselves as bad people. Referring to themselves as naturally bad people was the only way they could explain the rejection they experienced from others in the workplace. Not fitting in and feeling like an alien were common ways they described this feeling.”
Surprisingly, explains Dr. Stagg, receiving a diagnosis later on in life was seen by all but one of the participants as positive.
“They referred to this as a eureka moment and a relief,” Dr. Stagg told us. “The diagnosis allowed them to re-evaluate their past and gave them a clearer perspective on why they had experienced difficulties in their lives. It also opened up help at work for some of the participants, and they were able to adapt their jobs to reduce stress and anxiety.”
The participants reported a lack of help from the health service after they had received their diagnosis and instead found help through online support forums run by individuals with autism. Dr. Stagg was surprised that these individuals had reached their fifties without receiving a diagnosis of autism.
“Some of the participants had been receiving treatment for anxiety and depression for many years without health professionals considering autism as the underlying cause,” Dr. Stagg told us. “I was also surprised by how positive the diagnosis has been for many of the participants. The diagnosis had allowed them to re-evaluate their pasts and re-shape their present.”
The findings suggest that health care professionals need to be more aware of how autism in older adults is expressed, Dr. Stagg explained. Professionals need to consider screening for autism in cases of anxiety and depression, especially when there has been a history of frequent job changes and a feeling of isolation as a child.
“We also need to make people aware that there may be many cases of undiagnosed autism in adulthood,” Dr. Stagg told us. “Greater awareness may help more individuals to seek a diagnosis.”
Patricia Tomasi is a mom, maternal mental health advocate, journalist, and speaker. She writes regularly for the Huffington Post Canada, focusing primarily on maternal mental health after suffering from severe postpartum anxiety twice. You can find her Huffington Post biography here. Patricia is also a Patient Expert Advisor for the North American-based, Maternal Mental Health Research Collective and is the founder of the online peer support group - Facebook Postpartum Depression & Anxiety Support Group - with over 1500 members worldwide. Blog: www.patriciatomasiblog.wordpress.com