Adult autism diagnosis

Phil M.

Most people are diagnosed with autism in childhood. However, as autism becomes better understood, more adults are getting a diagnosis later in life.

There are many reasons why autistic adults may remain undiagnosed. Some may not be aware that their behaviors are related to autism. Others have learned coping strategies that allow them to navigate their differences in their daily lives. Still others may find the cost of a diagnosis to be inaccessible.

Many adults who show signs of autism but are not formally diagnosed live happy and full lives, but others may find certain aspects of life difficult. They may struggle to build meaningful relationships or have satisfying careers, despite wanting these things. Undiagnosed adults may also feel alienated and different without understanding why. In these cases, getting a diagnosis can provide a sense of relief, offering answers to life-long questions about identity.

For a complete overview, check out our Adult Autism Diagnosis Tool Kit.

The only way to know for sure if you are autistic is to get a formal diagnosis. The gold standard is to obtain a diagnosis from a psychologist, psychiatrist or similar trained clinician who specializes in ASD, but you may want to start by making an appointment with your primary care physician. You should expect your doctor will want to rule out other conditions or uncover conditions that commonly co-occur with autism.

You can also check with a respected autism center in your area, like those in Autism Speaks ACNet; search by your zip code in Autism Speaks Resource Guide; reach out to the Autism Speaks Autism Response Team; or ask your insurance provider.

Adult autism testing

There is not one autism test for adults. Instead, an autism evaluation typically consists of multiple appointments with a clinician. Unlike many health care visits, you won’t be asked to change into a gown or go through any scans or blood draws. Instead, you will talk with the clinician, do some cognitive activity-based tests and be asked to fill out a couple of questionnaires.

Getting a diagnosis as an adult can be more challenging than getting one as a child. Oftentimes, health care professionals ask adults seeking a diagnosis or their loved ones questions about their early development, which some people may not have answers to. A history of other diagnoses may also complicate getting an autism diagnosis.

To find out what to expect from the diagnostic process, read this Expert Q&A with Dr. Catherine Lord, clinical psychologist and member of the Autism Speaks Medical and Science Advisory Committee.

Benefits of getting an adult autism diagnosis

Infographic that lists the benefits of getting an autism diagnosis

One reason to pursue an ASD evaluation is that an adult with a formal diagnosis could be eligible for supports, services and protection under the Americans with Disabilities Act (ADA). The act spells out specific rights, including the right to reasonable accommodations at work and school, and protection against discrimination based on difficulties associated with autism.

A diagnosis could also lead to state-provided vocational support services. This can include vocational rehabilitation programs that provide counseling and job placement services for people with disabilities, including autism.
An official diagnosis can also help answer questions you may have had about yourself and your behavior for many years. For some, it is simply a relief to know that these behaviors can now be explained with the diagnosis. It can help you focus on your strengths and work around your challenges.

You may want a formal diagnosis if:

  • You need a specific type of therapy or other service that is only offered to those with a current autism diagnosis.
  • You want to access disability services and legal protections offered through the federal government or your state and are without another diagnosis that allows you to access them.
  • Your source of funding for services (health insurance, grants or government programs) is limited to people with autism.

Note: The rise in availability and ease of accessibility to information about autism has resulted in an increase in the number of people identifying with autistic traits. Given the barriers to getting a diagnosis, some people opt to self-identify as autistic after exhaustive research and careful self-reflection. Some may even identify as “self-diagnosed.” However, a diagnosis can only be done by a qualified professional. Importantly, a major limit to self-identification is that it prevents you from accessing autism services and legal protections.

At 44 years old, I would not have been an easy diagnosis except for the fact that as a child, my mother had kept a diary of my development. And there was evidence of all these autistic traits, like how I lined up my toys in a row starting at age 2.5 or how I would perseverate on my special interests. There could be very little doubt then. After over 10 years of suspecting, I had finally nailed it.

- Karl Wittig, a retired electronics engineer, reflects on his late diagnosis and career journey

Looking for support and resources?

You're not alone. Check out these resources:

Find your community

Join our private Facebook group, Adulting on the Spectrum, created to provide a space for autistic adults to cultivate friendships, find support and have fun. The moderators of the group are autistic adults.

Contact the Autism Response Team

Autism Speaks' Autism Response Team can help you with information, resources and opportunities.

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