What is Late Identified Autism

I offer an interview series called “Late-Identified Autism Interviews.” In it, late-identified autistic individuals share about their experiences of learning they are autistic.

I’m always looking for more autistics to participate in my interview series. Recently, an individual emailed me to say they would be interested in participating, but they weren’t sure what I meant by “late identified.”

I appreciated their frankness, for it’s a term I’ve been using with the assumption that everyone knows what it means.

I consider a person a late-identified autistic when they do not find out they are autistic until adulthood (age 18+).

Why does it matter to have a separate name for this category?

When someone doesn’t know they are autistic until adulthood, it means an individual went their entire childhood without knowing they were autistic. This has profound implications on an individual. Some examples include:

• Feeling they are broken

• Not receiving needed accommodations in school

• Living within a family that does not understand their needs

• Experiencing difficulty socializing

• Not having the skills or tools to work with their autistic minds

• Living with nervous system overload on a daily basis

• Reaching levels of autistic burnout, without knowing the cause

Furthermore, many unidentified autistics experience bullying and other traumatic experiences because of being othered. It is doubly traumatic because they cannot understand why they are different.

An identification of autism is life-altering because it means a person can finally understand how their brain works. They can understand why they feel different from others.

One of the biggest benefits is that a person can begin to explore how to work with their brain. Many unidentified autistics spend their entire lives trying to change their brain to be like others. An identification of autism provides freedom for a person to accept who they are and release shame.

In my personal experience and therapeutic work with late-identified autistic clients, the biggest shift is that people can finally honor how their brain works and make pivotal changes in their lives that lead to dramatically improved happiness and wellbeing. For example, some people make shifts that include:

• Limiting time spent in overwhelming sensory environments

• Changing their work schedule

• Altering their physical environment

• Giving themselves permission to say no to social obligations

• Having conversations with close friends and family members about how this impacts their relationships

"Multiple Impacts" Acrylic painting by Jackie Schuld

While these are wonderful benefits, a late-identified autistic person also has to grapple with unique emotions and experiences:

• Grief over the identification. Many autistics go through a period of mourning as they accept that this is the way they are and it will not likely change

• Grief and anger over the past. Many autistics mourn how different their lives could have been had they known they were autistic

• Processing new information. Regardless of the positive or negative associations an individual has with autism, a new identification is a lot of information to process. Furthermore, there is still a lot of information to learn, such as what an individual’s unique autistic profile/characteristics are

• Discussing identification with others. It can be very difficult for existing relationships to accept or understand a person’s autism identification. It can be equally as difficult for a newly identified autistic to navigate people’s responses and varying levels of support or dismissal

• Making changes and adaptations in life. There are many positive ways that an autistic person can alter their lives, actions, or behavior. It takes effort, time, and experimentation to find what works best with each person’s unique autistic mind. Even if it is a positive experience, the amount of energy required can be draining.

While there are general themes experienced by every late identified autistic, the specific experiences vary from person to person. This is one of the reasons I began my late-identified autistic interviews. I wanted to show more ways of how this happens and looks for different people.

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