Adults with autism say they always felt 'different' growing up. Why they say getting the diagnosis later in life was a 'relief.'
Gavin Bollard always considered himself to be "different" from other kids growing up. For many years, he says, he put it down to being deaf. "My best friend in my primary school years was also deaf, however, and his struggles were quite different to mine," Bollard, a 53-year-old father of two grown kids, tells Yahoo Life. "I've always felt alien, like I didn't belong anywhere."
It wasn't until Bollard was 36 years old that he was diagnosed with autism. And that's only because of his eldest son, then aged 5, who was having a hard time at school. "We had a couple of pediatricians look at him and they were only picking up ADD, the non-hyperactive form of ADHD," he says. "My son's teachers kept telling us that we were missing something huge and they said a few times, 'The apple doesn't fall far from the tree.' At the time, I was quite confused by their fruit references, but it became clear eventually."
Bollard says he and his wife would argue about their eldest son "because to me, his behavior was 'normal' — it was everything that I'd done as a child."
Eventually, their son's pediatrician diagnosed him with autism spectrum disorder (ASD). "He then told me that I was clearly also on the spectrum," says Bollard. Getting his own diagnosis "set me on a path to being able to understand myself," he says.
Like Bollard, Sarah Nannery, a 35-year-old mom of two, knew that she was "different" somehow, always feeling like "the odd one out," she tells Yahoo Life. "I could never find my place socially, while academically I excelled."
By the time Nannery got to college, she learned about what used to be called "Asperger's syndrome" (the doctor it was named after, Hans Asperger, had ties to the Nazis; it’s now more commonly referred to as high-functioning autism, although some argue that classification should be abandoned as well). She realized that sounded close to what she was experiencing. "But it wasn't until after I graduated, went on to graduate school, got married, started in my career and finally had my first child that it became clear that I really was needing extra help and something more significant than just 'quietness' or 'quirkiness' was going on," she says.
For Rebecca Dingwell, who had "long suspected my brain worked differently than many of my peers," she started to realize she might be on the spectrum after reading various autistic writers and bloggers. "I recognized myself in many of their stories," she tells Yahoo Life.
"Having a word to describe my way of being was empowering"
When Dingwell was diagnosed with autism two years ago, at 28 years old, she says, "Mainly, I felt relieved." It's a common refrain when adults (and children) receive their autism diagnosis. "Society does a very good job of making you feel 'crazy' or useless if you don’t function or behave in a way that's perceived as normal," she says. "Having a word to describe my way of being was empowering."
Nannery — who co-wrote the book What to Say Next: Successful Communication in Work, Life and Love with Autism Spectrum Disorder with her husband — says that getting her autism diagnosis at 31 ended up being "one of the best decisions of my life," adding: "It has clarified so many things about me and who I am, and why I think the way that I do and why I might struggle with certain things more than others."
It's something poet, artist and musician Morgan Harper Nichols, who received her autism diagnosis two years ago at age 31, can relate to. She tells Yahoo Life that getting diagnosed as an adult was "incredibly meaningful," calling it "a significant turning point in my life."
"For so long, I struggled to understand why I experienced the world in the way that I did," Nichols says. "The diagnosis gave me the language and framework to better understand my experiences and challenges. It allowed me to finally seek out support by finding the right specialist, which was life-changing."
For Bollard, however, the diagnosis led him to wrestling with his identity for years. "I was terribly sad that all of the things that I'd grown to love about myself and my 'uniqueness' could be put down to a medical condition rather than 'creativity,'" he shares. “I struggled for at least another 10 years after the diagnosis in coming to terms with who I was and which parts were 'me' versus 'autism.'"
But, he says, his own diagnosis was also a "huge relief" because it gave him an important perspective as a parent of a child with autism: It showed Bollard that his son's diagnosis was nothing to worry about. "After all, I had myself as a model and I'd turned out OK," he says. "My wife and I made a decision to tell him as early as possible and to live with autism rather than trying to hide it. It was the best decision we ever made."
How common is it to be diagnosed with autism as an adult?
An estimated 5.4 million (or 2.21%) of adults in the U.S. have autism spectrum disorder, according to the Centers for Disease Control and Prevention. "We believe that many adults who meet criteria for diagnosis of autism have not been formally diagnosed," Dr. Christopher Hanks, the founding medical director of the Center for Autism Services and Transition (CAST) at the Ohio State University Wexner Medical Center, which is one of the nation's largest clinics dedicated to treating adults on the autism spectrum, tells Yahoo Life. "Therefore, it is not unusual for an adult to be diagnosed as on the autism spectrum."
But why does it seem like more adults (and children) are getting diagnosed with ASD now? Hanks says there are multiple reasons for this. "As awareness of autism has increased, we are seeing increasing rates of diagnosis in children," he says. "This increase is largely due to better screening and recognition. However, many people who are now adults were not identified when they were younger because health care providers and families were less aware of the manifestations of autism" than they are now.
Social media also plays a role, with many people on these platforms encouraging others to pursue an autism diagnosis or even self-diagnose. "I think this has driven more people to seek a possible diagnosis as well," says Hanks. "The neurodiversity movement is decreasing the stigma associated with autism, allowing people to feel more comfortable exploring this as a possibility. While I do not encourage self-diagnosis, I do think decreasing stigma and moving society to a more accepting and accommodating place is important for the health and wellbeing of autistic individuals."
What are the most common signs of autism?
Getting an autism diagnosis is based on two key components, says Hanks: a difference in social communication and interaction, and repetitive or restrictive patterns of behavior, interests or activities. "Although signs and symptoms are present in early childhood, they may not become obvious until later in childhood, or adulthood, when demands increase," he says.
How these traits show up vary from person to person and can present differently in women than in men. For example, a person on the spectrum may struggle with back and forth conversation or have challenges with non-verbal communication, such as making eye contact and reading body language, says Hanks.
It's something Nichols herself has struggled with. "It has taken decades of practice to try and make sense of the tone in other people's voices," she shares, adding that the effort she needs to put into both speaking and making sense of others — whether it's while hanging out with a friend or at the grocery store — is "incredibly exhausting, and I often need a lot of recovery time."
People on the spectrum can also have a hard time developing and maintaining relationships. "Growing up, I went from friend group to friend group trying to find the right fit," Dingwell says. "It took me many years to understand what healthy relationships — both platonic and romantic — looked like. Most of my close relationships today are with other neurodivergent people, which helps."
Other signs can include repetitive movements — sometimes called "stimming" — or an "insistence on sameness" and a "need for routine," says Hanks. "It can also manifest as fixated interests with high levels of strengths and/or focus," such as a deep knowledge about animals or numbers or an intense interest in trains or music.
Sensory input can also be a challenge. "I am very sensitive to light, sound, touch, et cetera, and can get overwhelmed very easily by sensory stimuli," says Nannery, whose son also has autism. "So having a couple of loud, messy, chaotic kids running around my house is hardly an ideal sensory situation. But what we do is make sure to incorporate downtime for me where I can be by myself in a quiet, dimly lit room for a little while to recuperate from near-constant sensory overload around the kids."
Hank notes many individuals with autism — including adults — may benefit from therapies, whether that's speech therapy to work on communication skills or occupational therapy to improve their ability to self-manage. But social acceptance — not just trying to "fix" things — is also important. "As an example, if an autistic individual finds eye contact while communicating with others to be uncomfortable, rather than focusing on a therapy to teach them to make eye contact, interaction with people who accept that eye contact is not preferred by that individual is more likely to be beneficial," he says.
Hanks emphasizes that all of these traits aren’t necessarily negative and can actually be helpful in some ways. "I think it is important to recognize that these key components may be strengths of an individual," he says. "A high level of focus or interest in something is not necessarily bad. It can be extremely beneficial in some areas of employment. The same is true for other components of autism. Although they are differences, they are not necessarily 'deficits' or 'disorders.'"
What people on the spectrum wish others knew
There's a saying that if you've met one person with autism, you've met one person with autism. "It's a spectrum for a reason," says Dingwell.
Nannery agrees, saying: "Autistic people are not a monolith. Just like anybody else, we are vastly diverse, of different genders, races, nationalities, ages, personalities, strengths and challenges."
Many more adults are discovering that they are autistic, says Nichols, and "I believe it's important to recognize that each of our stories are different." She adds: "I think that empathy, awareness, acceptance and compassion play an important role. And my hope is that all autistic people can receive the support they need."
Wellness, parenting, body image and more: Get to know the who behind the hoo with Yahoo Life's newsletter. Sign up here.