Getting an Autism Diagnosis as an Adult

January 15, 2020
By Zawn Villines

Although most autism literature focuses on children, autism is a lifelong spectrum condition that affects about 1% of adults. People who are diagnosed with autism in adulthood may have a range of reactions. Some may feel confused about their identity, while others might feel peace of mind now that they have an explanation for their unique cognition. No single reaction is “right,” and many people bounce from one emotion to another following a diagnosis.

Autistic adults who did not receive supportive services in childhood may have struggled in school or with relationships. While finding support can be difficult, a wide range of organizations offer help to autistic adults. Many organizations focus on helping autistic adults see their diagnosis as a unique way of thinking—not a disease or syndrome.

Barriers to Official Diagnosis

A generation or two ago, many people had their autism go unnoticed, especially if their symptoms were relatively mild. Even as recently as 2000, just 1 in 150 children were diagnosed with autism, compared to 1 in 59 in 2014. This apparent increase in the autism rate is likely due to better early diagnosis and detection. The shift toward greater awareness of autism means that people who did not get diagnosed in childhood may pursue diagnosis as adults.

Even as early diagnosis becomes more prevalent, some groups are less likely to be diagnosed as children:

Adults may miss autism symptoms in girls, particularly since most media coverage of autism focuses on boys. A 2017 study found that autistic girls may have better social skills than their male peers, masking symptoms of the condition. This can delay diagnosis, sometimes into adulthood.
Racism may lead to underdiagnosis of autism in children of color, especially black children. Children of color are diagnosed later than their white peers, and black children are more likely to be misdiagnosed, leading to inadequate or inappropriate treatment regimens.
Poverty and classism can reduce access to appropriate health care. Children who attend underserved public schools may not have the resources that wealthier children possess. Additionally, without quality doctors or adequate insurance coverage, parents may delay seeking treatment for unusual symptoms in their children. Even in adulthood, financial woes may deter a person from seeking mental health care or make it difficult to find a competent clinician.

Self-Diagnosis

As autism awareness spreads, some people self-diagnose with autism spectrum conditions. This practice is controversial. Supporters of self-diagnosis point to the many barriers to official diagnosis, emphasizing that even when a person can afford treatment, they may not receive an accurate or timely diagnosis. Some other arguments in favor of self-diagnosis include:

Neurodivergence as identity. Many adult autistics view autism as a type of neurodivergence, not a disease. They see autism as something that brings both benefits and challenges, and they embrace autism as an identity. Many disability activists herald the right of a neurodivergent person to self-identify as such.
Potential for improved accuracy. An autistic person knows their own symptoms better than anyone else. Armed with sufficient research and a sound understanding of autism, a person may be able to accurately diagnose themselves. In fact, they may do so faster than a professional.
Stress of diagnosis. Getting a diagnosis often requires many long and involved tests. It also requires numerous interactions with medical professionals, receptionists, insurance representatives, and other people involved in managed care. These interactions can be highly stressful, especially to some people with autism.

Conversely, the arguments against self-diagnosis include:

Potential reliance on autism stereotypes. Stereotypes about people with autism are pervasive and often paint an inaccurate portrait of the diagnosis. While some autistic people struggle with social interactions and cues, others do not. Autism is a continuum of symptoms, and people who rely on media portrayals or popular articles as their primary source of information may get the diagnosis wrong.
Fear of appropriation. Some autistic self-advocates feel that people who self-diagnose are co-opting another person’s identity and lived experiences. There is a concern that some self-diagnosed individuals might present themselves as representatives of the autistic community without understanding its history.
Lack of access to support. Some forms of support may require an official diagnosis. A person seeking accommodations at work, for example, may need a letter from a doctor.

Members of the same community who share similar values often have significant disagreements about the value of self-diagnosis.

Reacting to the Diagnosis

People diagnosed with autism should know that the diagnosis does not change anything about who they are. It merely gives them a label to apply to their symptoms and experiences.

There is no “normal” or “right” reaction to an autism diagnosis. Indeed, many people cycle through a wide range of reactions. Some quickly join self-advocacy communities and become disability rights activists. Others feel embarrassed or ashamed. Some are angry that they did not get a diagnosis earlier. Still others feel comforted because they finally have a label that describes the challenges they have experienced.

Newly diagnosed autistics may find that processing the diagnosis with friends, family, or a therapist helps them manage their emotions.

Finding Autism Services for Adults

Autistic adults often struggle to find services, since many advocacy organizations and public health agencies focus on children. The right doctor or therapist may be able to offer a referral to local organizations. The Autistic Self Advocacy Network offers a rich variety of resources, including tips on advocating for oneself and talking about autism with others. The Asperger/Autism Network has compiled a list of resources specifically for adults.

Autistic adults should know that discrimination against people with autism is a form of disability discrimination. The Americans With Disabilities Act prohibits employers from making hiring or firing decisions based on disability status. It also requires that, in most cases, employers offer “reasonable” accommodations to people with disabilities, including those with autism. In some cases, a lawyer may be a valuable resource who can help with identifying specific rights and accommodations to which a person may be entitled.

Therapy can help autistic adults in many ways. Therapists who specialize in autism can connect autistic people to additional services, offer coping strategies, and educate adults about life on the spectrum. A therapist can also help autistic adults talk to others about their diagnosis and manage relationship challenges. In addition, therapy can help a person cope with the social or economic barriers that may have delayed their diagnosis.

You can find a compassionate autism therapist here.

References:

Dababnah, S., Shaia, W., Campion, K., & Nichols, H. (2018). “We had to keep pushing”: caregivers’ perspectives on autism screening and referral practices of black children in primary care. Intellectual and Developmental Disabilities, 56(5), 321-336. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/30273522
Data and statistics on autism spectrum disorder. (2019). Retrieved from https://www.cdc.gov/ncbddd/autism/data.html
Murphy, C., Wilson, C., Robertson, D., Ecker, C., Daly, E., & Hammond, N. et al. (2016). Autism spectrum disorder in adults: diagnosis, management, and health services development. Neuropsychiatric Disease and Treatment, Volume 12, 1669-1686. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940003/
Sarrett, J. (2016). Biocertification and neurodiversity: The role and implications of self-diagnosis in autistic communities. Neuroethics, 9(1), 23-36. Retrieved from https://link.springer.com/article/10.1007/s12152-016-9247-x
The Americans with Disabilities Act of 1990 (ADA). Retrieved 8 January 2020, from https://www.carautismroadmap.org/the-americans-with-disabilities-act-of-1990-ada/

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