Dr. Elisheva Levin was 45 when she received her autism diagnosis. After a lifetime of struggling to fit in, the pieces finally clicked when her son was diagnosed with autism, and she realized that they shared many similarities. Her diagnosis gave her a deeper understanding of herself and a new perspective on the challenges she faced throughout her life.
“I spent a lot of my time as a young girl daydreaming,” she says.1 “I spent my young teenagerhood imagining that I was in fantasy worlds and not in the world that I was in, because the world I was in was so painful. When I got my diagnosis, I was actually relieved. All of a sudden, I could understand my life and my problems in a very different way, because I understood that my brain works differently.”
Now, Dr. Levin, Ph.D., devotes her career to disability policy. In her work as a senior research scientist, at the Center for Development and Disability in the University of New Mexico School of Medicine, she is bringing autistic representation to the field and using public health data to provide research that benefits people with autism and other developmental disabilities.
The Weight of Not Knowing
Like Dr. Levin, many autistic people live much or all of their whole lives, without a formal diagnosis. Growing awareness of autism spectrum disorder (ASD) has led to a rise in diagnoses among children,2 but for adults, getting a diagnosis remains a challenge. Autism Speaks’ Adult Autism Diagnosis Tool Kit,3 written by a team of autistic adults, can help people who suspect they may have autism, identify the signs and learn about next steps.
“There are approximately 5.4 million autistic adults in the U.S., yet the autism field’s understanding of aging across the lifespan is exceedingly low,” says Andy Shih, chief science officer at Autism Speaks. “It is increasingly clear that there is a large population of autistic adults who were not diagnosed in childhood and who were frequently misdiagnosed with other conditions. Our recent Thought Leadership Summit on Autism and Aging4 revealed that this has resulted in a critical absence of research and healthcare professionals capable of providing the specialized care needed for this unique population.”
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, struggling to succeed in certain areas, or masking their autism to fit in.
According to a Drexel report,5 autistic adults experience higher rates of co-occurring mental health conditions than their peers, including anxiety (28%), bipolar disorder (25%), ADHD (23%) and depression (22%).
“From talking to lots of adults diagnosed in adulthood, there’s good reason to believe that co-occurring anxiety and depression, in particular, could be a result of spending many decades of life feeling stigmatized, and not understanding the difficulties that they had in certain areas,” says Dr. Vanessa Bal, M.Sc., Ph.D., Karmazin & Lillard chair in adult autism and associate professor at the Graduate School of Applied & Professional Psychology at Rutgers University. 6 “The uncertainty of not having an autism diagnosis as a way to understand their experience could contribute to higher rates of these conditions.”
A study from Autism Research7 shows that age of diagnosis can have a major impact on mental health. People who were diagnosed over age 21 were 2.7 times more likely to have co-occurring mood, anxiety, personality or eating disorders than people who were diagnosed in childhood. These conditions greatly impact quality of life and can increase the complexity and cost of healthcare.
“Experts have claimed for a long time that autistic people are more prone to anxiety and depression, and that it’s somehow caused by their brains. But the fact is, that the world looks a lot different from the perspective of people with autism. If you don’t fit in, it makes sense that you’re going to be more anxious and depressed, because being social takes so much of your energy that you don’t get to live your life,” says Dr. Levin.
The Path To a Diagnosis
Screening for autism in adults can be challenging. Currently, there are few clinicians who specialize in adult autism, so it can be difficult to find someone who is comfortable with (and skilled in) diagnosing and treating autism in adults.
Dr. Cathy Lord, Ph.D., George Tarjan distinguished professor of psychiatry in the David Geffen School of Medicine at UCLA, recommends that adults seeking a diagnosis start by going to a general therapist, psychologist or psychiatrist.8 While these specialists will take self-referrals, a referral from a primary care physician could help speed up the process.
Another approach is contacting a clinician who specializes in autism in children. A developmental pediatrician, child psychiatrist or pediatric neurologist may be open to seeing older patients.
Though there are established diagnostic tests for ASD in adults, autism looks different for everyone, and many older adults learn how to mask their symptoms, making an autism diagnosis based on observation challenging. Over the course of multiple appointments, adults are typically asked to speak with the clinician about their childhood and present life, do various activities, and fill out questionnaires.
At Dr. Lord’s clinic, the process begins with a conversation about what the adult is seeking from the assessment. Then, clinicians speak with someone who knew the patient as 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,” she explains.
After the initial interviews, patients are asked to do a full assessment to test their cognition, executive functioning, and ability to make judgments. Lastly, clinicians do a social-emotional functioning interview to measure people’s ability to hold a job, make friends, and other social activities, as well as an adaptive behavior scale to measure independent living skills. They also screen for depression, anxiety and ADHD – common co-occurring conditions that accompany autism.
A formal diagnosis will come with a written evaluation that explains which autism criteria was met, the level of diagnosis, as defined in the DSM-5, and other diagnoses and suggested supports. This document could open the door to benefits or services from state, federal and other public agencies.
Signs of Autism in Adults
You may have spent your entire life not recognizing the signs of autism, or not realizing that some of the issues and feelings you have dealt with were related to autism. Here are what the three hallmark symptoms of ASD might look like:
- Feeling left out of social circles or not fitting in
- Difficulty interpreting what others are thinking and feeling
- Inability to pick up on or misunderstanding nonverbal cues, including eye rolls, shoulder shrugs, grimaces and other facial expressions used to convey emotion
- Inability to see things from another person’s perspective
- Difficulty carrying on a conversation
- Tendency to carry on monologues on a favorite subject
- Needing a high level of directness and honesty in conversation
- Preference to communicate via text or email
- Needing to keep household or other objects in a fixed order or place, and becoming upset if someone or something disrupts the order
- Needing strict consistency in your environment or daily routine
- Having an extreme interest in a certain topic
Read more in our Autism Speaks
Adult Autism Diagnosis Tool Kit: www.autismspeaks.org/AdultToolkit
The Work Ahead
While the medical profession has made huge strides in early diagnosis, much work remains in the field of autism and aging. There is a shortage of research into issues that affect autistic individuals across the lifespan, and a shortage of mental health professionals who are trained to provide support to autistic adults.
“We’ve made huge strides in early diagnosis, but we also need to do a much better job of training our general practitioners in the mental health field, to be prepared to see autistic adults,” says Dr. Bal. “We simply do not have the capacity as a specialty field, to assess and diagnose all the people who need to be seen. So we need to find other ways. Some people will continue to benefit from specialty care, but there ought to be a subset of people who can go and get a diagnosis from a more general mental health professional, who has enough training to help them map out their path forward.”
- Autism Speaks. Dr. Elisheva Levin shares her experience with masking and late diagnosis. 2023. https://www.autismspeaks.org/blog/dr-elisheva-levin-shares-her-experience-masking-and-late-diagnosis
- Maenner MJ, Warren Z, Williams AR, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14. DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1
- Autism Speaks. Adult Diagnosis Tool Kit. 2023. https://www.autismspeaks.org/adulttoolkit
- Autism Speaks. Autism Speaks hosts the Thought Leadership Summit on Autism and Aging. 2022. https://www.autismspeaks.org/science-news/autism-speaks-hosts-thought-leadership-summit-autism-and-aging
- Rast, Jessica E., Garfield, Tamara, Roux, Anne M., Koffer Miller, Kaitlin H., Hund, Lisa M., Tao, Sha, Kerns, Connor M., Rosenau, Kashia A., Hotez, Emily, Anderson, Kristy A., Shattuck, Paul T., and Shea, Lindsay L. National Autism Indicators Report: Mental Health. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University, August 2021.
- Autism Speaks. Expert Q&A: Dr. Vanessa Bal discusses gaps in mental health care for autistic adults. 2023. https://www.autismspeaks.org/blog/expert-qa-dr-vanessa-bal-discusses-gaps-mental-health-care-autistic-adults
- Jadav, N., & Bal, V. H. (2022). Associations between co-occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research. Autism Research, 15(11), 2112–2125. https://doi.org/10.1002/aur.2808
- Autism Speaks. Expert Q&A: What to expect when getting an autism diagnosis as an adult. 2023. https://www.autismspeaks.org/blog/expert-qa-what-expect-when-getting-autism-diagnosis-adult
ABOUT THE AUTHOR:
Marta Chmielowicz is the Content Manager of Mission Delivery at Autism Speaks, where she leads science communications to advance the mission of Autism Speaks to create an inclusive world for all individuals with autism throughout their lifespan.
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