What’s It Like to be Diagnosed With Autism as an Adult? New Research Takes a Closer Look

While autism research continues to evolve, access to assessments may pose a barrier to diagnosis, and cause many autistic individuals to be overlooked in childhood. A study published in the Journal of Autism and Developmental Disorders found that the age of diagnosis was related to decreased quality of life and increased levels of autistic traits in adults.

Getting diagnosed as an adult is certainly better than receiving no diagnosis whatsoever, but individuals who are diagnosed sooner stand a better chance of implementing lasting strategies in order to lead fulfilling lives as autistic people. Because many autistic individuals report anxiety, the timely diagnosis of autism may assist with the management of associated mental health challenges, as well as reducing the urge to mask autistic symptoms.

The Research

In Study 1, researchers found that participants did not report improvements in quality of life with age, unlike neurotypicals, which highlighted how age of diagnosis was associated with maladaptive behaviors, with women reporting later diagnosis and higher autistic traits.

In Study 2, how quality of life and late diagnoses were experienced was explored through interviews, and researchers found that delays in getting diagnosed often had negative impacts on autistic individuals.

While this research demonstrates the importance of providing support to assist neurodivergent individuals from a young age, a limitation of these results is that it only presents a "snapshot in time" as this field evolves. A study published in Psychology and Psychiatry found that the number of individuals diagnosed with autism in the UK has increased by 787% in the last twenty years, likely due to a growing understanding of autism.

Delays in Diagnosis

Marisa Russello, a 35-year old married bisexual White woman in New York, who works as a mental health advocate and writer, was only diagnosed at the age of 33. She says, "Once I realized I should be tested, it was relatively easy for me to get evaluated. I researched different places nearby that might be able to do an evaluation, which took some time, and I located a clinic about an hour's drive from where I'd been living. I had to wait a couple of months for an appointment, but luckily, the evaluation was 100% covered by my insurance."

Russello describes how she had never thought that she could be autistic, but when a new therapist brought the possibility to her attention and explained the traits, it sounded like her. "I was severely bullied in middle school and had an extremely difficult time maintaining relationships with friends. I've also struggled with anxiety, depression, and suicidal thoughts since that time, at age 12," she says. 

Russello explains, "I did research to find out what characteristics are often displayed by autistic children, and then I asked my mom about my childhood. I was surprised to learn that a lot of things lined up. For example, I used to love spinning in circles around the house and would lay my toys across the floor in color order all the time as a kid. That's when I decided to have the evaluation. After I received the results, I thought, thank God everything makes sense now. There's actually an explanation for my behavior!"

In terms of her decision to have an evaluation, Russello highlighted difficulty with interpersonal relationships, especially at work. "When I was a public school teacher, I was called into HR multiple times at various jobs to discuss the manner in which I spoke to my coworkers and students' families. In particular, I had major problems with people misinterpreting my email communications. Some of 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'm able to share this with my boss, which helps our relationship significantly," she says.

Costly Autism Assessments

C., a Black nonbinary writer, based in California, who was 25 when they were diagnosed with autism, says, "My biggest barrier was insurance. I had to move to a state with the option for public coverage, otherwise, I couldn't have afforded my assessment."

C. explains that their understanding of autism was based on their experiences and talking to other autistic people, which seemed to be different from the version of autism screeners, who were likely, not autistic. "I almost had to denigrate myself to communicate with my doctor," they say.

As an example, C. highlights how things that bring them joy became things in which they had an "unusual amount of interest" and their shared interests with friends became "unable to socialize without shared interests" in screening. "I went with my friends/community members, which really helped because they provided perspectives that were part of what my diagnosing doctor needed, but they didn't participate in the language that was being subtly enforced. One of my friends shared, for instance, that I could talk in detail and at length about my special interests, but they refused to call it excessive as the doctor suggested," they say.

C. describes, "In some ways, it was the last piece of the puzzle, but it was an odd piece. I came into my diagnosis from within the community, so I was surrounded by autistic and neurodivergent people that I spoke with at length for years. I had already been self-diagnosed as autistic for a year before my diagnosis. What my doctor provided was the way other people saw me. Even though a lot of his language was inaccurate, like asking if I talked excessively, or showed emotion, it was helpful to know what had or could be projected onto me, because it helps me protect myself, and it gives me a lot of clarity about my experiences with people."

"The Lost Generation"

Lead researcher for this study, and Senior Lecturer in Psychology at Edge Hill University, Gray Atherton, Ph.D., says, "While in the general population quality of life improved with age, for autistic individuals, they were related to the age of diagnosis rather than chronological age. Interestingly this was found to be even more pronounced amongst females than males. In short, the earlier an autistic individual received a diagnosis, the better their quality of life."

Gray explains that "the lost generation" refers to the many autistic adults that are only now receiving a diagnosis. "Our study suggests that those who were diagnosed later in life experienced more mental health challenges, including greater social anxiety and reduced social support," she says.

Gray continues, "There were a number of reasons some individuals weren’t diagnosed at an early age. Besides the obvious barriers involving time and resources, some of the other reasons were tied to stigma and a reluctance to ‘label’ people with a disability. Others were related to misconceptions about autism, including a difficulty seeing a person with certain skills and abilities as also having a neurological difference. This research suggests that receiving a diagnosis earlier in life is extremely beneficial for autistic people and that having a ‘label’ can, in fact, be empowering for autistic people of any age."

Although the autistic adults who were interviewed believed that receiving a diagnosis was extremely helpful with regards to self-acceptance, Gray highlights that the road to a diagnosis as an adult was not easy. "Living without a diagnosis through childhood and adulthood reflected years of feeling ‘alien’ and misunderstood," she says.

Gray says, "This research shows that those who receive diagnoses later in life are a group of particularly vulnerable people in need of support. Adults who are newly diagnosed should be eligible for specific services, such as support groups and counseling sessions, where they can work on reconceptualizing themselves as autistic and dealing with past trauma."

The main takeaway message, according to Gray, is that getting a diagnosis of autism provided a new perspective on their identity, as well as access to services and support. "Getting this diagnosis at any age was beneficial, but the earlier this was, the better. Autistic adults diagnosed later in life have particular mental health challenges that need to be better addressed by current services," she says.

Deficits-Based Autism Models

An autistic psychotherapist, Sharon O'Connor, LCSW, says, "For many folks who discover they are autistic in adulthood, the diagnosis becomes a key piece of information to explain so many elements of our lives which may not have previously made sense. All of a sudden, there is one word that is now a shorthand to describe our struggles, and also our unique strengths. It can be a real lightbulb moment and a great relief for many."

O'Connor explains, "The discovery of autistic identity can open a doorway to connecting to the greater autistic and neurodivergent community, where one may find they have so many qualities in common with others—traits they might not have even known were autism-related. There is often a shared "language" and understanding among autistic folks. Mutual support and understanding can make a world of difference when someone might have gone through a large part of their life not feeling understood or heard."

While early identification of autism can be helpful to better understand and meet a child's individual needs, O'Connor cautions that the purpose of early identification should never be to eliminate or reduce autistic traits or encourage masking to more resemble a neurotypical person. "Autism is not something to be corrected," she says.

O'Connor explains, "There is still a lot of misdiagnoses that happen. Autistic people who don't resemble a particular stereotype might instead get diagnosed with something like anxiety or depression. But if we as professionals don't better understand someone's needs, we can't begin to effectively support them. I would love to see a move away from the model that identifies autism primarily through deficits and distress signals and toward a view of autism that is more holistic and balanced."