Adults with Autism: The Difficulties and the Strengths

Autism is a neurological profile characterized by a distinct way a person thinks, communicates, and perceives the world. Autism is a spectrum, which means that autistic people can have distinctly varied presentations. While autism is something a person is born with and is often apparent in early childhood, it is not uncommon for it to take years, or even decades, for one to receive a formal diagnosis. 

With this in mind, we spoke with David Lynch, PhD, and Liliana Valvano, LMSW, clinicians at Columbia’s Lieber Recovery Clinic, which offers an array of group-based supports designed to be neuro-inclusive, gender-affirming, and person-centered to get their insights on some common questions related to experiences of autism across the lifespan.

Why are some autistic people not diagnosed in childhood?

There are many reasons why some children may fly under the radar. While the diagnostic criteria have been more clearly outlined over the years, by its very nature, presentations of autism vary tremendously from person to person. The diagnostic criteria for autism spectrum disorder (ASD) were expanded in 2013, and many medical providers may be less familiar with new criteria, leading them to miss traits in children who do not fit an older conception of autism.

Another reason some children may not be identified as autistic is that cisgender girls are diagnosed less frequently than cisgender boys. Some speculate this is because gender roles are more strongly imposed on cisgender girls, leading them to learn to camouflage autistic traits. Additionally, children in under-resourced and overpopulated schools may not receive the specialized attention needed to identify autism traits and may instead be categorized as ‘difficult children.’

What difficulties can children who are not diagnosed face? What are common misdiagnoses?

Children who are not diagnosed will not receive needed support and accommodations and may face immense difficulties coping with day-to-day life. They may be subject to isolation and bullying at school, categorized as ‘difficult’, ‘dramatic’, ‘picky’, or a ‘troublemaker’, and behaviors may be met with punishment rather than understanding and support. These experiences of unmet needs and isolation in early childhood can lead to severe mental health issues in adolescence, demonstrated by the higher suicide rate in autistic adolescents as well as diminished academic success.

What difficulties do undiagnosed people have in adulthood?

Living as an undiagnosed autistic adult can be difficult because the individual lacks a sort of context for the challenges they have faced in life.

This can lead to an internalized sense of failure and low self-esteem, as well as an increased risk of depression, anxiety, and suicidal ideation. Undiagnosed adults may compare themselves to neurotypical peers, feeling that there must be ‘something wrong with them’ as tasks are so challenging to them but not others. Undiagnosed autistic adults may be misdiagnosed with other psychiatric disorders, which often results in treatment that may not address the whole picture. Additionally, many state supports, such as OPWDD, require that a diagnosis be given before age 22, barring those diagnosed late from one of the most expansive support programs. 

What is the process like for an adult to be diagnosed? What barriers do people face?

The gold standard for autism diagnosis is comprehensive. Providers start by looking at the developmental history of the adult. The provider also assesses how the patient thinks and behaves and reviews self-report questionnaires completed by the adult.

It can be hard to find people who can assess adults. Often, these assessments are costly and may not be covered by insurance. And even then, sometimes clinicians can have a singular perspective of what autism looks like and may not consider differences that can present due to gender, culture, class, and other identity factors. For example, low-income autistic adults may have cultivated social masking skills as a necessity for survival while working customer service jobs, leading them to have less observable autism traits.

How can an autism diagnosis benefit an adult?

Individuals who receive an adult diagnosis of ASD sometimes report looking back at their childhood, schooling, and interpersonal experiences with a new perspective. With this knowledge, autistic adults can also navigate and advocate for their current support needs. While emphasizing autonomy and a strengths-based approach, seeking academic and workplace accommodations can also increase success and decrease burnout and mental health consequences. Lastly, adults gain access to a rapidly growing neurodiversity community where they can build meaningful peer relationships, find sameness, and become involved in advocacy, which gives many a sense of purpose.

What is the world like today for autistic adults?

Society is rapidly evolving about autism acceptance, especially as the neurodiversity movement pushes for a shift away from seeing autistic people as disordered and toward understanding autistic people as valued contributors to the fabric of society. There are workplace initiatives in many large companies to welcome autistic adults, community centers for autistic people to make friends and gain enrichment, and even autistic dating apps! Life is not as limited for autistic people as it was even just ten years ago. A diagnosis can lead to better self-understanding and self-compassion, expanded opportunities, and a richer, fuller life. And while autistic people may have specific difficulties, they also often have immense strengths. With a combination of support, self-advocacy, community, and acceptance, autistic people can thrive.