Autistic Adults Grow Up Believing They Are “Bad People”
Sun, April 18, 2021

Autistic Adults Grow Up Believing They Are “Bad People”

People with ASD have symptoms that hurt their ability to function properly at work, in school, and in other areas of their life. / Photo by: Vetre Antanaviciute-Meskauskiene via 123rf

 

People diagnosed with autism spectrum disorder later in life have been found to have grown up believing that they are “bad people” and feeling “alien” when with other people. This is based on a study conducted by researchers from the Anglia Ruskin University.

Diagnosed With Autism in Later Life

The researchers explained in their study titled "Living with autism without knowing: receiving a diagnosis in later life" that they interviewed nine adults over 50 years old who were recently diagnosed with autism. They then used thematic analysis - forms of analysis that identify, analyze, and interpret patterns of qualitative data - to analyze the transcripts.

The results of their study show that participants had also received treatment for depression or anxiety and did not know that they were living with autism. In their childhood, these same people felt that they were “alien” or “isolated” from other human beings. As they grew up as adults, they could not likewise understand why they were treated differently by other people.

Study participants echoed that they lack support from other adults with their new diagnosis, which is ASD. It is a developmental disorder that affects a person’s behavior and communication. The American Psychiatric Association says that people with ASD have symptoms that hurt their ability to function properly at work, in school, and in other areas of their life. They have repetitive behaviors and restricted interests, and have difficulty with interaction and communication with other people.

The developmental disorder contains the word “spectrum” because there are variations of severity and type. 

Need for ASD Diagnosis Exclusive in Middle Age

Anglia Ruskin University’s Senior Lecturer in psychology and co-author of the research Dr. Steven Stagg said that one part of the research he considers “heart-wrenching” was the fact that participants had grown up thinking that they were bad individuals. They also considered themselves “non-human." The university researchers emphasized the importance of having a diagnosis that is exclusively done in middle age, reports American magazine Newsweek.

Both Dr. Stagg and co-author Hannah Belcher suggest that receiving such a diagnosis may be positive. Often, the participants had a “eureka moment” in which they gained an understanding of something incomprehensible in the past. The study explains that health workers and clinicians should be aware of the possible symptoms of autism spectrum disorder. In most cases, patients are misdiagnosed with mental health conditions, anxiety, or depression and miss the autism. 

 

People with ASD have repetitive behaviors and restricted interests, and have difficulty with interaction and communication with other people. / Photo by: lightfieldstudios via 123rf

 

Three Mechanisms of Re-Evaluation

The researchers also said that more work is needed to support patients like their study participants, who just received the diagnosis later in life. “Receiving a diagnosis of [Autism Spectrum Condition] in later life will necessarily pose challenges to self-concept and possible futures,” the study reads. The patients will have to re-evaluate their sense of self in these three mechanisms of re-evaluation: meaning-making, taking control, and self-esteem building.

By meaning-making, they need to examine the causes and determine how such a change will alter the present meaning system. Second, they need to gain control of their current situation after knowing they have ASD and, third, build their self-esteem. It would likewise be helpful on their part to compare themselves with other individuals who also undergo the same situation as they become more aware of the problem and the diagnosis will be less likely a “source of shock.”

Aside from Dr. Stagg and Belcher’s research, no study has investigated the phenomenon of receiving ASD diagnosis exclusively in older middle age or in middle age. They even detailed that since receiving a diagnosis of ASD in middle age is uncommon, the nine participants were difficult to recruit. Seven of the participants were in committed relationships or married and two were currently single. Their age range was between 52 and 54.

Six of the participants are employed full-time, one had retired, and two were unemployed. When asked why they sought medical diagnosis, three of them reasoned that it was because they had a child who had been diagnosed with ASD, two had partners who asked them to seek diagnosis, and two were referred by their therapist. There were also those who went for a diagnosis because their colleagues or friends suggested that they may have ASD.

Autism Spectrum Disorder Prevalence

Research institute in the area of global health statistics Institute for Health Metrics and Evaluation’s Global Burden Disease details the share of males versus females with ASD. They presented the data in age-standardized form to compare between different countries. 

The worldwide prevalence of ASD among males in 2017 was at 0.65 percent and for females, 0.21 percent. In Canada, the prevalence of ASD among males was at 1.51 percent and 0.39 percent in females. Other countries highlighted included Japan (1.34 percent males, 0.37 percent females), India (0.51 percent males, 0.19 percent females), Singapore (1.15 percent males, 0.34 percent females), Taiwan (0.5 percent males, 0.12 percent females), Brazil (0.61 percent males, 0.22 percent females), and the United States (1.2 percent males, 0.28 percent females).