Expert Q&A: What to expect when getting an autism diagnosis as an adult
Growing awareness of autism spectrum disorder (ASD) has led to a rise in prevalence among children. But for adults, getting a diagnosis remains a challenge. Many adults who are not formally diagnosed do not realize that some of the things that make them unique are related to undiagnosed ASD. Some learn to navigate their differences very well, achieving major milestones like being in relationships or building successful careers. Others spend their lives feeling out of place and struggling to succeed in certain areas.
In this Q&A, Dr. Catherine Lord, Ph.D., clinical psychologist and member of the Autism Speaks Medical and Science Advisory Committee, discusses what to do if you suspect you have autism as an adult. She talks about how autism symptoms look different in adults and what to expect from the diagnostic process.
Dr. Lord is the George Tarjan distinguished professor of psychiatry in the David Geffen School of Medicine at UCLA. She is a practicing clinical psychologist focused on autism across the lifespan. Her research and clinical work are aimed at improving methods of identifying strengths and difficulties in people with ASD in order to maximize independence and well-being.
Why do adults usually pursue an autism diagnosis?
Adults typically seek out a first diagnosis because they want to understand themselves. They often feel that people don’t understand them, and sometimes have a history of being bullied, teased or misunderstood. They may have a demanding job where they’re exhausted from the social demands of the job. Or they may have children and struggle to deal with the unpredictability of meeting somebody else’s needs.
Often, the people we see in our clinic have difficulty with something and can’t quite figure out why. They feel like people are giving them feedback that they’re not doing things right when they think they are. For example, we recently saw a professor who keeps getting notes from his students that he’s rude during his lectures, but he can’t understand why.
What does undiagnosed autism look like in adults? How is it different from autism in children?
The people who are getting first diagnoses as adults typically have both strengths and challenges. The children we see in our autism clinic range from very bright to very intellectually impaired, but if an adult grew up without being referred for a diagnosis, chances are that they are pretty strong intellectually. They might have executive functioning problems, but they do not have significant cognitive impairment.
Undiagnosed adults also tend to have far fewer overt repetitive behaviors than kids do. They’re not clapping their hands, spinning or doing things we might see in a 3-year-old. The sensory issues they experience are often very real, but they’re more subtle.
Another difference between autism in children and adults is language. One of the major reasons why kids get referred for autism diagnoses is delayed or unusual language. They may repeat words, recite things from television or make grammatical errors. Many of the adults I’ve seen for first diagnosis did not do that—their challenges are typically more subtle. For example, they may have a very strong vocabulary but trouble understanding how to adapt their speech to different audiences, so people may think that they’re pedantic or arrogant.
What does the diagnostic process look like for adults?
Typically, we begin the process by meeting the adult virtually and talking to them about what they are looking for and why they want the assessment. Then, if the adult is comfortable with it, we get information from someone who knew them when they were a child. That is very useful because autism is a developmental disorder, so we are looking for something that has always been there but may not have caused difficulty until later in life.
Then, we do a 3-hour assessment face-to-face. With kids, we’re often looking at language delays and intellectual disability, but that’s less the case with adults. For adults, we do some standard cognitive tasks to see the person in action, because so many of the issues that come up for autistic adults are related to executive functioning and making judgments. For example, we recently saw a 30-year-old young man who has a degree in physics. We did a test where we asked him to define certain words and he was incredibly good, but he had a hard time knowing when to stop. He’d get started on a definition and go on for 10 minutes, not realizing that what we really needed is one sentence.
Then, we do an Autism Diagnostic Observation Schedule (ADOS) assessment. The ADOS isn’t perfect—certainly, it can miss people. The smarter you are, the more likely you are to get missed, whether you’re 14 or 40. But it allows us to do a series of tasks designed to create contexts in which many people with autism have some difficulty.
Lastly, we do a social-emotional functioning interview. It’s nothing fancy—we ask simple questions like where you work, how you got your job, what you like, what’s challenging for you, how you met your friends, what you look for in a friend, etc. We also do an adaptive behavior scale to measure independent living skills: Do you do laundry? Do you go to the grocery store? Who takes care of ordinary functions in life for you? We also may screen for depression, anxiety and ADHD—the most common co-occurring conditions that accompany autism.
If someone suspects they might have autism, where should they go?
They could go to a general therapist, a psychologist or a psychiatrist. But one of the problems is that almost everybody in those fields doesn’t take insurance. So that makes it really hard to get a diagnosis—it’s expensive. At our clinic in UCLA, an assessment costs around $5-6k (but we take insurance).
Once an adult receives a diagnosis, does that open some doors in terms of services?
Some, but not many. A fair number of private practices that offer diagnoses also offer consultation and case management. It’s not free, but they may be able to help the person get into a job training program or get accommodations at work. If people want practical help, they should ask the provider beforehand what kind of support they offer.
- Dr. Elisheva Levin shares her experience with masking and late diagnosis
- Karl Wittig, a retired electronics engineer, reflects on his late diagnosis and career journey
- Watch Dr. Lord's presentation on her research with autistic adults at the Autism Speaks Thought Leadership Summit on Autism and Aging: