Do I "have” autism? Why so many adults go undiagnosed

Note: At NeuroSpark, we use identity-first language (e.g., autistic person vs. person with autism). We want to make assessment and diagnosis more accessible for autistic folks, and therefore want to capture all the individuals who are on their journey of self-understanding by welcoming the individuals who are using search engines to ask “do I have autism.” We support you.

Self-discovery is an important part of life, and it can continue well into adulthood. If you have asked yourself the question “Do I have autism?,” you may be on the path to discovering more about your identity. Autism can go undiagnosed through earlier years for a plethora of reasons. While autism should ideally be noticed in childhood, many adults are wondering if they were overlooked, undiagnosed or unidentified. Many adults can go through life knowing that they have unique traits and experiences, but are realizing later in life that these qualities align with the autism spectrum and begin exploring their neurodivergent identities. Receiving a formal diagnosis is not at all necessary to self-identify as autistic. Self-identification and self-diagnosis is valid. That being said, a diagnosis can help provide formal answers and validation to a person’s experience. A diagnosis may also be needed to qualify for certain benefits and programs. Many adults do decide to pursue an autism diagnostic assessment for various reasons.

Why do so many adults struggle to find autism-affirming assessment and diagnosis? The reasons are complex. The factors for each individual are different. However, there are a few significant reasons. Understanding why people go undiagnosed, or the barriers to receiving appropriate diagnosis, can help us better support self-diagnosed, formally diagnosed and autistic-exploring people. All routes to self-discovery are important. 

Why autistic adults can go undiagnosed

• Lack of awareness and specialized training — Limited awareness of autism still persists in many areas. In the medical community, a lack of awareness can lead to missed diagnoses, or even misdiagnosis. Even medical professionals can have misconceptions, or a lack of sufficient training, about the broad range of traits and characteristics that can be associated with autism. Autism also manifests differently between individuals. It is important to remember that autistic people do not all have the same presentations, which is why it is called the autism spectrum. This can make it difficult for those with limited knowledge of autism, and the various ways it presents, to make an accurate diagnosis.

• Bias and stereotypes — Biases can lead to misidentification or ignorance of symptoms. Autism is often stereotypically associated with boys and men. This can lead to underdiagnosis in women, trans and nonbinary individuals. Gender bias and other stereotypes ingrained in diagnostic criteria can further contribute to this skew. Autistic people from different backgrounds may present with diverse social communication patterns. It is essential for diagnosticians and neurodiversity-affirming therapists to combat these issues by fostering an informed, supportive and inclusive environment.

• Subtle signs — The signs of autism do not always get recognized at the same age for everyone. Some people may not receive a diagnosis until adulthood due to subtle signs that providers, parents and teachers just didn’t pick up on. Autistic adults who present more subtly may still have difficulty receiving a diagnosis. Fortunately, it is never too late. Adults who previously went undiagnosed can still seek evaluation. For those who want or need it, a diagnosis in adulthood can bring strong feelings of relief and validation. A diagnosis can also make it easier to access appropriate support.

• Masking and camouflaging — Growing up, autistic people can sometimes learn to hide the signs of autism. An undiagnosed adult may have developed mechanisms to camouflage in order to fit into societal norms. In most cases, this comes at the expense of their own well-being and even though they may present as 'normal' in public, it can be exhausting and draining. This is called masking. Masking means concealing autistic traits and mimicking neurotypical behavior. For example, making eye contact even though it is very uncomfortable for the autistic person. This can make it difficult for others, including health care professionals, to recognize the signs of autism.

• Self-identification — Not everyone wants a diagnosis. There is more than one valid path to self-discovery. Some people comfortably identify as autistic without having received a formal diagnosis. For those who make the personal choice not to receive a diagnosis, community support and resources are still important and available. Resources like neurodivergent-affirming coaching can yield great benefits whether you are formally diagnosed or self-diagnosed.

• Cultural factors — Neurodivergence can be perceived differently within different cultures. In some cases, cultural or social norms can influence the recognition of autism. It is important to note that much of the historical research and information about autism was gathered by white men using data from primarily white boys. Race, ethnicity and culture are extremely important factors in understanding the disproportionality of diagnosis for people of color. 

Find your path to self-discovery with NeuroSpark

Still wondering “Do I have autism?” NeuroSpark provides specialized culturally sensitive and LGBTQIA2S+ affirming assessment in a judgment-free environment. We understand for many autistic people formal diagnosis can be a double-edged sword. That’s why we only share your results with you. And only you. It is up to you to share (or not share) your diagnosis as you see fit. This way, you can realize the benefits of a formal diagnosis on your own terms. 

Do you “have autism”? NeuroSpark can help you take the next step in self-understanding and exploration. Our team works hard to ensure that your priorities are reflected in everything we do for this community. We understand the nuances of the autism spectrum and our diagnosticians are experts in autism evaluations for late-identified adults.