The Plight of Undiagnosed Adults with ASD

by | May 20, 2021

People often ask me, are there adults who never got diagnosed with ASD and what happens to them?

My answer is that yes, there are many, many adults with ASD who have never been diagnosed.

That includes people of all ages: seniors, those in middle age, young adults and everything in between.

Most of these people are relatively high functioning, but struggling with relationships, fitting in to their world, or being able to cope, manage or succeed in some or many areas of life. And the key is that they don’t know why their life doesn’t (or in the case of older individuals – hasn’t previously) worked.

Recognize and Improve

We recognize them as people with issues, although we usually don’t pinpoint the autism. We may call them lazy, angry, unhappy, jerks, mean, stupid and a whole host of other nasty adjectives that describe our opinion of them. Unfortunately, most people don’t have enough knowledge to accurately identify the presence of the autism below the personality traits that are so objectionable.

That’s where we as family members, medical and therapeutic professionals, and good neighbors need to improve if the autistic community is to be supported.

Traditional forms of therapy may provide a temporary band aid that relieves some of their symptoms, but if the core issue of autism is never really addressed, success in therapy is either short-lived or very limited. Lasting change happens only when the therapist and client recognize and address how autism impacts the life of the person who has it. Successful autism therapy is different than traditional therapy. Learn how to do therapy with someone on the autism spectrum with our training for professionals!

Connecting the Dots

Based on the inordinately large percentage of stories I have heard of mental health issues, addiction, and incarceration, I am certain there is a connection. I believe there are many adults with ASD who have turned to alcohol, drugs, and self-destructive behavior to self-medicate their pain.

Some have ultimately found their way to organizations like Alcoholics Anonymous after self-medicating to the point where the problem became visible to them or someone in their life as addiction. AA works for many of them because of its divine combination of simple, clear, black and white rules, and the breadth of interpretation allowed of those rules.

Yet that may still not fully resolve the dilemma of someone on the spectrum.

The autism is what creates many of these qualities we label negatively, but we often blame the individual for possessing them, as if they consciously made a choice not to deal with or manage their issues to overcome them. And then we expect them to be able to recognize and manage those behaviors. That may work for someone not on the spectrum, but those with ASD may not be able to deliver on that expectation.

One of the saddest parts about an adult without a diagnosis, is that he or she is often left feeling so angry at the world, full of self-reproach, or at a loss as to how to live a satisfying life that they become hopeless and depressed.

“What ultimately happens to individuals with ASD that either are never diagnosed or are diagnosed but not supported properly through family understanding, environmental accommodations, and appropriate therapy?”

I have seen it in my own family and among the people I am in contact who are on the spectrum but not willing to accept a diagnosis. Life doesn’t work for them and they don’t know why.

What ultimately happens to individuals with ASD that either are never diagnosed or are diagnosed but not supported properly through family understanding, environmental accommodations, and appropriate therapy?

Unfortunately, the answer to this question is not a pretty one. Many end up lonely – living a life that is a constant struggle. Some become homeless, some turn to drugs, alcohol and other negative behaviors to cope with the frustration, aggravation, self-reproach, confusion and despair. Some commit suicide, some live under bridges after giving up, and some turn in desperation to self-destructive and illegal activities.

And it just doesn’t have to be that way!

Be that Support Group

These same individuals, given the proper support, understanding, and encouragement might very well be able to live happier and more successful lives, avoid the pitfalls of addictive behavior, and crime, and have solid and satisfying relationships.

But, as they say, it takes a village! That’s because autism by its nature inhibits the recognition of itself!

As the newest burgeoning generation of individuals with ASD begins to age out of the system in the next 10 years, the issues that are currently struggled with primarily by families will have an ever-increasing impact on our national and global communities.

When those of us without ASD begin to naturally recognize and provide the fertile ground that nurtures an individual on the spectrum, the gaping wound that autism has caused in our world begins to heal.

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