How To Pursue an Autism Diagnosis as an Adult

Thanks to growing awareness of autism spectrum disorder (ASD), diagnoses have been on the rise among children. At the turn of the millennium, the U.S. Centers for Disease Control and Prevention (CDC) reported that 1 in 150 8-year-old children had an autism diagnosis. By 2018, the number was 1 in 44. As of 2020, the number was 1 in 36.

But what about adults?

It wasn’t until 2020 that the CDC released its first adult-focused data, reporting that an estimated 2.21% of adults in the U.S. are autistic. That report recognizes that children diagnosed with ASD in the early 2000s are now transitioning to adulthood. It also acknowledges that there isn’t currently a good way to collect data on how many adults are actually autistic.

Adult psychiatrist Rachael Ferrari, MD, talks about what you can do if you think you’re one of them, and how to pursue a diagnosis.

Pursuing an autism diagnosis as an adult

If you weren’t diagnosed with ASD in childhood, you may have spent an entire lifetime overlooking traits, behaviors and challenges consistent with autism. And not seeking out resources designed to help.

Depending on your age and your coping mechanisms, you may feel like you’re “too old” to bother with a diagnosis, especially if you’ve figured out healthy ways to navigate through life. But Dr. Ferrari says it’s still worth looking into getting diagnosed.

“Getting a diagnosis can lead to personal empowerment and an understanding of your strengths versus weaknesses,” she encourages. “It also opens the door to potential services, supports and communities where you can meet other autistic people.”

How to get diagnosed with autism

Parents and caregivers who are having their kids assessed for autism see healthcare providers who are trained to do specific screenings, evaluations and observations. They include specialized pediatricians, child psychologists and speech-language pathologists.

But because so many behavioral health professionals specialize in autism for children, it can be difficult to find someone who’s comfortable with (and skilled in) diagnosing and treating autism in adults.

“Many autism centers are primarily child-focused, so as you age out of them and move into adulthood — especially if you have characteristics that weren’t caught as a child — finding support can become a huge issue,” Dr. Ferrari acknowledges.

Try finding a psychiatrist or psychologist in your area who works with autistic adults. If you can’t find one (especially if you live in a more rural area with fewer healthcare providers), he recommends reaching out to a pediatric psychiatrist or psychologist. Ask if they’re comfortable assessing for and diagnosing ASD in adults.

And keep in mind that the answer may be “no.”

“Psychologists are skilled at doing specific cognitive testing, but you’ll have to find one who is OK with assessing adult patients and adapting ASD tests for adults,” she continues.

If you can’t find a psychiatrist or psychologist that specifically treats autism, Dr. Ferrari recommends starting with a general psychiatrist, therapist or your current primary care provider.

“More generalists are being trained to do adult autism screenings these days,” she explains. "The providers can also identify other co-occurring psychiatric conditions that may need to be addressed and treated as part of the process.”

Whoever you end up working with, here are some of the things they’re likely to look at:

• What you’re like today. Your doctor will ask about your interests, how you communicate with others, your sensory awareness and any repetitive behaviors — anything that will help them get a clearer picture of whether you fit the criteria for ASD.
• What you were like as a kid. Your doctor may ask if they can speak with a parent or sibling who can give them insight into your childhood behaviors. “Some of those childhood traits of ASD may be hidden away now, but if we talk to family members long enough, we can get some really helpful insight,” Dr. Ferrari says.
• Whether you have any other conditions. Autism spectrum disorder can occur alongside other medical conditions, so your initial healthcare provider may transfer your care or bring in other specialists if they suspect you have another diagnosis (either instead of or in addition to ASD).

There’s one thing your provider definitely won’t ask you about: the many quizzes and tests you’ll find bouncing around on social media that claim to reveal whether you’re neurodivergent.

There’s nothing wrong with using the internet to learn more about other autistic people’s experiences. But all the videos, quizzes and infographics are no substitute for a formal diagnosis by a trained healthcare professional. And they could end up pointing you in the wrong direction.

It’s hard when you want answers. But approach the diagnostic process with your mind open to all the possibilities.

Finding the support you need

It can be stressful to go through the process of pursuing an autism diagnosis as an adult. But it could be more challenging to spend your life trying to adapt on your own.

Dr. Ferrari recommends looking for community resources and trying to connect with other autistic people. Not only can it help you feel less alone, but it can also encourage you to become a self-advocate who speaks up for yourself and your needs.

“It’s important that autistic people at all stages, including adults, have the opportunity for an excellent quality of life, including having meaningful work and quality relationships,” she says. “It can be really empowering to get a diagnosis that allows you to see your differences as strengths.”