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Key Takeaways
Whileautismresearch 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 theJournal of Autism and Developmental Disordersfound that the age of diagnosis was related to decreased quality of life and increased levels of autistic traits in adults.
Gettingdiagnosed as an adultis 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.
What Is Autism?
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 onautistic individuals.
The Neurodivergent Guide to Socializing
Delays in Diagnosis
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.
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.
What to Know About Autism and Life Expectancy
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.
What’s It Like to be Diagnosed With Autism as an Adult? New Research Takes a Closer Look
“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 Atherton, PhDAdults 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.
Gray Atherton, PhD
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.
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.”
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.”
Sharon O’Connor, LCSWThe 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.
Sharon O’Connor, LCSW
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.
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.”
What This Means For YouThis research highlights the importance of timely diagnosis and support for autistic individuals. It is why O’Connor says, “If we can identify autism early on, understand and meet the unique needs of autistic kids while celebrating them for exactly who they are, we are on track for raising happy, healthy autistic people. And that’s the ultimate goal.”
What This Means For You
This research highlights the importance of timely diagnosis and support for autistic individuals. It is why O’Connor says, “If we can identify autism early on, understand and meet the unique needs of autistic kids while celebrating them for exactly who they are, we are on track for raising happy, healthy autistic people. And that’s the ultimate goal.”
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4 SourcesVerywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Atherton G, Edisbury E, Piovesan A, Cross L.Autism through the ages: A mixed methods approach to understanding how age and age of diagnosis affect quality of life.Journal of Autism and Developmental Disorders. Published online September 4, 2021. doi:10.1007/s10803-021-05235-xHowlin P, Taylor JL.Addressing the need for high quality research on autism in adulthood.Autism. 2015;19(7). doi:10.1177/1362361315595582Russell G, Stapley S, Newlove‐Delgado T et al.Time trends in autism diagnosis over 20 years: a UK population‐based cohort study.Journal of Child Psychology and Psychiatry. 2021. doi:10.1111/jcpp.13505Huang Y, Arnold SR, Foley K-R, Trollor JN.Diagnosis of autism in adulthood: A scoping review.Autism. 2020;24(6). doi:10.1177/1362361320903128
4 Sources
Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Atherton G, Edisbury E, Piovesan A, Cross L.Autism through the ages: A mixed methods approach to understanding how age and age of diagnosis affect quality of life.Journal of Autism and Developmental Disorders. Published online September 4, 2021. doi:10.1007/s10803-021-05235-xHowlin P, Taylor JL.Addressing the need for high quality research on autism in adulthood.Autism. 2015;19(7). doi:10.1177/1362361315595582Russell G, Stapley S, Newlove‐Delgado T et al.Time trends in autism diagnosis over 20 years: a UK population‐based cohort study.Journal of Child Psychology and Psychiatry. 2021. doi:10.1111/jcpp.13505Huang Y, Arnold SR, Foley K-R, Trollor JN.Diagnosis of autism in adulthood: A scoping review.Autism. 2020;24(6). doi:10.1177/1362361320903128
Verywell Mind uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Atherton G, Edisbury E, Piovesan A, Cross L.Autism through the ages: A mixed methods approach to understanding how age and age of diagnosis affect quality of life.Journal of Autism and Developmental Disorders. Published online September 4, 2021. doi:10.1007/s10803-021-05235-xHowlin P, Taylor JL.Addressing the need for high quality research on autism in adulthood.Autism. 2015;19(7). doi:10.1177/1362361315595582Russell G, Stapley S, Newlove‐Delgado T et al.Time trends in autism diagnosis over 20 years: a UK population‐based cohort study.Journal of Child Psychology and Psychiatry. 2021. doi:10.1111/jcpp.13505Huang Y, Arnold SR, Foley K-R, Trollor JN.Diagnosis of autism in adulthood: A scoping review.Autism. 2020;24(6). doi:10.1177/1362361320903128
Atherton G, Edisbury E, Piovesan A, Cross L.Autism through the ages: A mixed methods approach to understanding how age and age of diagnosis affect quality of life.Journal of Autism and Developmental Disorders. Published online September 4, 2021. doi:10.1007/s10803-021-05235-x
Howlin P, Taylor JL.Addressing the need for high quality research on autism in adulthood.Autism. 2015;19(7). doi:10.1177/1362361315595582
Russell G, Stapley S, Newlove‐Delgado T et al.Time trends in autism diagnosis over 20 years: a UK population‐based cohort study.Journal of Child Psychology and Psychiatry. 2021. doi:10.1111/jcpp.13505
Huang Y, Arnold SR, Foley K-R, Trollor JN.Diagnosis of autism in adulthood: A scoping review.Autism. 2020;24(6). doi:10.1177/1362361320903128
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