What does it feel like to be diagnosed with autism as an adult? New research takes a closer look

Key Takeaways

  • Autistic adults reported lower quality of life and higher autistic trait levels based on age of diagnosis.
  • Even when adults feel empowered by their diagnosis, they need special support.
  • Timely diagnosis of autism can improve mental health outcomes for individuals.

Although autism research continues to evolve, access to assessments can create barriers to diagnosis and many autistic individuals may be overlooked in childhood. A study published in Journal of Autism and Developmental Disorders Age of diagnosis has been found to be associated with reduced quality of life and increased levels of autistic traits in adults.

Being diagnosed as an adult is certainly better than no diagnosis at all, but individuals who are diagnosed sooner have a better chance of implementing long-term strategies to lead fulfilling lives as autistic people. Because many autistic individuals report anxiety, a timely diagnosis of autism can aid in the management of associated mental health challenges, as well as reduce the urge to mask autistic symptoms.


In Study 1, researchers found that participants did not report improvement in quality of life with age, unlike neurotypicals, which highlights how age at diagnosis was associated with poorer behavior, with women reporting later diagnosis and higher autistic traits.

In Study 2, how quality of life and late diagnosis were experienced were explored through interviews, and the researchers found that delay in diagnosis often had a negative impact on autistic individuals.

Although this research demonstrates the importance of providing support to help neurodivergent individuals from a young age, a limitation of these findings is that it represents only a “snapshot in time” as the field evolves. A study has been published Psychology and Psychiatry It has been found that the number of people diagnosed with autism in the UK has increased by 787% over the past twenty years, possibly due to a growing understanding of autism.

Delay in diagnosis

Marisa Russello, a 35-year-old married bisexual white woman from New York who works as a mental health advocate and author, was diagnosed at just 33 years old. He says, “Once I realized I should be tested, it was relatively easy for me to get evaluated. I researched different places around that might be able to do an evaluation, which took some time, and it was about a mile from where I lived. Located a clinic an hour’s drive away. I had to wait several months for an appointment, but luckily, the evaluation was 100% covered by my insurance.”

Russello describes that he never thought he might be autistic, but when a new therapist brought the possibility to his attention and explained the characteristics, it sounded like it. “I was severely ostracized in middle school and had an extremely difficult time maintaining relationships with friends. I have struggled with anxiety, depression and suicidal thoughts since the age of 12,” she says.

Russello explains, “I did research to find out what traits are often exhibited by autistic children, and then I asked my mother about my childhood. I was surprised that so many things aligned. For example, I loved spinning. Circles around the house. And as a child I used to put my toys across the floor in order of color. That’s when I decided to get evaluated. After I got the results, I thought, thank God everything makes sense now. There is actually an explanation for my behavior!”

In terms of his assessment decisions, Russello highlighted difficulties in interpersonal relationships, particularly in the workplace. “When I was a public school teacher, I was called into HR multiple times at various jobs to discuss the way I spoke to my colleagues and students’ families. In particular, I had a big problem with people misinterpreting my email communications. . My supervisors also complained about my lack of eye contact and negative or judgmental facial expressions. They also claimed that I was overly rule-oriented and inflexible. All of these traits I now know are due to my autism, and I am able to share this with my boss. , which helps our relationship significantly,” she says.

Costly Autism Assessment

C., a black nonbinary writer based in California, who was 25 when she was diagnosed with autism, said, “My biggest hurdle was insurance. I had to move to a state with public coverage options, otherwise, I could’ not afford my assessment.” .”

C. explained that their understanding of autism was based on their experiences and talking to other autistic people, which seemed different from the autism screener’s version, who were probably not autistic. “I almost had to humiliate myself to contact my doctor,” they say.

For example, C. Highlighting how things that gave them pleasure became things in which they had an “unusual amount of interest” and their shared interests with friends became “unable to socialize without shared interests” at the screening. “I went with my friends/community members, which really helped because they provided perspective that was part of what my diagnosing doctor needed, but they didn’t share the language that was subtly applied. For example, a friend of mine shared, that I I could talk in detail and at length about my special interest, but they refuse to elaborate on it as advised by the doctor,” they say.

C. describes, “In some ways, it was the last piece of the puzzle, but it was a strange piece. I came to my diagnosis from within the community, so I was surrounded by autistic and neurodivergent people who I talked to for a long time. Over the years. I was diagnosed as autistic a year before my diagnosis. All my doctor gave me was the way other people saw me. Although a lot of his language was wrong, like asking if I talked too much or showed emotion, on me. Knowing what was or could be projected was helpful, because it helped me protect myself and it gave me a lot of clarity about my experiences with people.”

“Lost Generation”

The study’s lead researcher, and senior lecturer in psychology at Edge Hill University, Gray Atherton, PhD, said, “While quality of life improved with age in the general population, for autistic individuals, it was related to age at diagnosis rather than chronological age. Interestingly, it found to be more pronounced in females than males. In short, the earlier an autistic person is diagnosed, the better their quality of life.”

Gray explained that the “lost generation” refers to the many autistic adults who are now being diagnosed. “Our study suggests that those who were diagnosed later in life experienced more mental health challenges, including greater social anxiety and reduced social support,” he says.

Gray Atherton, Ph.D

Newly diagnosed adults should be eligible for specific services, such as support groups and counseling sessions, where they can work to reframe themselves as autistic and deal with past trauma.

– Gray Atherton, Ph.D

Gray continues, “There were several reasons why some people were not diagnosed at a young age. In addition to the obvious barriers involving time and resources, other factors were linked to stigma and reluctance to ‘label’ people with disabilities. Others related to misconceptions about autism. were, including difficulties and neurological differences in seeing a person with a specific skill and ability. In fact, can be empowering for autistic people of any age.”

Although the autistic adults interviewed believed that receiving a diagnosis was extremely helpful in terms of self-acceptance, Gray highlighted that the road to diagnosis as an adult was not easy. “Surviving through childhood and adolescence without a diagnosis reflects years of feeling ‘alien’ and misunderstood,” she says.

Gray says, “This research shows that people diagnosed later in life are a particularly vulnerable group of people who need support. Newly diagnosed adults should be eligible for specific services, such as support groups and counseling sessions, where they can reframe themselves as autistic. And work to deal with past trauma.”

According to Gray, the main takeaway message is that being diagnosed with autism offers a new perspective on identity as well as access to services and support. “Diagnosis at any age is beneficial, but the earlier it is, the better. Autistic adults diagnosed later in life have particular mental health challenges that need to be better addressed by current services,” she says.

Deficit-based model of autism

Sharon O’Connor, LCSW, an autistic psychotherapist, says, “For many people who discover they are autistic in adulthood, the diagnosis becomes an important piece of information in explaining many aspects of our lives that previously made no sense. , a word that is now a short hand to describe our struggles and our unique strengths.

O’Connor explains, “The discovery of an autistic identity can open a door to connecting with the larger autistic and neurodivergent community, where one may find that they have many qualities in common with others—characteristics that they used to be autism-related.” Didn’t know. Autistic people often have a shared “language” and understanding. Mutual support and understanding can make a difference when someone goes through a large part of their life not being understood or heard.

Sharon O’Connor, LCSW

Discovering an autistic identity can open a door to connecting with the larger autistic and neurodivergent community, where one can find that they have others in common—characteristics they didn’t even know were autism-related.

— Sharon O’Connor, LCSW

While early detection of autism can be helpful in better understanding and meeting a child’s individual needs, O’Connor cautions that the purpose of early detection should never be to eliminate or minimize autistic traits or encourage the mask to resemble a neurotypical individual. “Autism is not something to fix,” she says

“There’s still a lot of misdiagnosis,” explains O’Connor. “Autistic people who don’t fit a certain stereotype may instead be diagnosed with something like anxiety or depression. But if we as professionals don’t understand someone’s needs well, we don’t understand them.” Can’t begin to effectively advocate. I want to move away from a model that primarily characterizes autism through deficits and distress signals and toward a view of autism that is more holistic and balanced.”

What does this mean for you?

This study highlights the importance of timely diagnosis and support for autistic individuals. That’s why O’Connor says, “If we can identify autism early, understand it, and meet the unique needs of autistic children while celebrating them just for what they are, then we’re well on our way to raising happy, healthy autistic people. And that’s the bottom line.” target.”

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