Autistic Adults Felt 'Alien' Growing Up

One participant of a new study on autistic patients over 50 had sadly revealed, “I’d always felt like this alien … I feel like I’m a different type of human to non-autistic humans.” 

According to the journal Health Psychology and Behavioural Medicine published on November 6, all the nine participants grew up with an inferior feeling of being bad human beings. This was before being diagnosed with autism in middle age, which then gave them a sense of clarity on their personality. 

How The Study Was Conducted 

The nine adults ( 5 male and 4 female) between 52 and 54 years old were interviewed by the researchers at Anglia Ruskin University (ARU) via Skype, email and phone. Face to face interviews were either conducted on campus, their home or a hotel lobby. Recruiting them for the study was a tough task. It had to be done through online forums dedicated to sharing information on the Autism Spectrum Condition (ASC) since the diagnosis is not common among people in middle age. 

Seven of the participants based in the United Kingdom had been diagnosed within two years of taking part in the study by a clinician at the National Health Service. One of them was diagnosed 10 years before, and another interviewee had been diagnosed seven years prior to the study.

The researchers claim this is the first study to look at older people living with autism by understanding their childhood experiences and their interactions in adulthood. They wanted to figure out their sense of self and how social narratives play out in the mind through the process of interviewing them personally in detail. Rather than employing the usual question and answer format devised to understand psychological patterns, they went with the flow of the conversation to unearth the underlying feelings of the interviewees.

Findings Of The Study

A significant revelation appeared in the findings. “A key theme to emerge from our research, and not previously reported, was the feeling of being different to the extent of being an alien. This theme has not been reported in other studies focusing on receiving a diagnosis most likely because past research has focused on children,” the researchers stated in the paper. 

Autism awareness Autism doesn't just go away after childhood. Anwar Amro/AFP/Getty Images

“I've never had friends; I’ve never made friends,” one of the interviewees told the researchers in the study. Most of them had recalled not having close friends while growing up and unable to make friends even in adulthood. In fact, they could accurately recall being seen as different as children, and experiencing rejection and isolation from peers. 

“I always knew I was different, I always knew I didn’t fit in, but I didn’t realise what it was, the label that went with it,’’ one participant was quoted in the study. “I thought maybe I’m a bad person, I’ve got a horrible personality, there’s something about me people don’t like, and I didn’t understand why,” another participant added. 

But once they realized that it was autism that was holding them back, they felt a lot better. Dr. Steven Stagg, lead author and senior lecturer of psychology at ARU indicated that patients were relieved they were diagnosed in middle age, although it was delayed diagnoses.“It allowed them to understand why others had reacted negatively towards them,” Stagg said.

Participants Appeared Well Adjusted

What was surprising is that it did not interfere with them finding partners and getting married, having children or even seeking employment. In total, seven people with ASC were either married or in a committed relationship with at least one child, six of the participants were engaged in full-time employment and one had retired.

An unusual finding was that three participants had a child diagnosed with ASC, which gave them clarity and were then able to identify the symptoms in themselves. But the other participants were urged by people around them to seek help. For instance, two were advised by their partners on seeking a diagnosis, two were advised by colleagues and the remaining two were referred by psychologists treating them for other conditions.   

The diagnosis is not made in most cases since the symptoms are attributed to depression and anxiety, but the patients still do not recover completely. "Clinicians and health workers need to be aware of the possible signs of autism. Often people are diagnosed with depression, anxiety or other mental health conditions and the autism is missed. More work also needs to be done to support older people after they receive a diagnosis," Stagg added.