Growing up with undiagnosed autism is increasingly being recognized as a distinct source of chronic, complex trauma, also known as, C-PTSD. When a child’s fundamental way of experiencing the world is dismissed, punished, or misunderstood, it creates an environment of invalidation. This interferes with a child’s basic process of getting to know themselves and being able to express their own feelings, needs, and preferences, which is so essential to social adjustment.

Undiagnosed autistic adults become quite skilled in passing for “normal.” Below are some of the chronic and often traumatic misunderstandings, with which they may be quietly burdened. They have shared many of them with a concerning consistency and this has led some clinicians to the conclusion that they are among the most underserved populations in the world: 

As you read, ask yourself “Does this feel familiar?”  

Internalized Self-Loathing and Confusion: Without a diagnosis to explain why they think and feel differently, undiagnosed children often internalize their struggles as personal, moral failures. Many developed a sense of being unlovable that is difficult to shake. 

The “Alien” Phenomenon: A pervasive, lifelong feeling of being completely different from everyone else, or operating without a “human manual.” Sometimes they have wondered who they can ask, without risking judgement.

Defectiveness: Believing they are inherently broken, lazy, stupid, or “crazy” because basic tasks and social interactions seem to require agonizing effort. This can contribute to a saddening loss of interest in relationships. They are too difficult.

Hyper-vigilant Self-Analysis: Constantly over-analyzing their own behavior and guessing what they did wrong, leading to a habit of over-apologizing for their mere existence. It is important to remember that children who have endured hardships, whether autistic or not, often develop these habits, but for autistic kids it is an additional problem, one that is layered on top of the others.

The Trauma of “Masking”: Masking, or camouflaging autistic traits to pass as neurotypical, is a survival mechanism that carries a massive psychological toll over time. This has been called a burden similar to carrying an invisible suitcase all day. 

Loss of Identity: Suppressing natural thoughts, body movements (stimming), and expressions for so long that the individual completely loses touch with their authentic self. Sometimes individuals will appear “out of touch” or aloof, when they are just trying to cope. 

Physical Disconnection: Learning to completely dissociate or numb themselves to block out distressing sensory inputs.

Autistic Burnout: A state of total mental, emotional, and physical exhaustion resulting from years of relentless effort to fit in, sometimes culminating in a sudden inability to cope with daily life. 

Nervous System Dysregulation: Living in a permanent state of “fight, flight, or freeze” because social interactions feel like high-stakes performances where safety is never guaranteed. 

Everyday, science is shedding more light on what happens to a developing brain that has been exposed to stress beyond its comprehension, from infancy onward. Helping neurodirse individuals understand that they may be in that steRecognizing that those with autism, may be in that state and that it is understandable, often helps them to learn to relax. 

Invalidated Sensory Overload: Because their sensory differences are invisible and undiagnosed, children are often forced to endure environments that cause them physical pain. 

 It is disturbing to think of a child in a classroom, experiencing pain in response to the type of lighting and afraid to tell anyone. These students are enduring discomfort and fearing reactions from teachers and classmates at the same time, which discourages them from attempting to explain. 

Enforced Tolerance: Being told they are “too sensitive” or “dramatic” when distressed by sounds, lights, textures, or smells. As a former guidance counselor I would point out to adults that this terminoloy is a form of gaslighting because it contributes to a negative view of a nervous system the student did not choose.

Punished Meltdowns: Sensory overload or emotional breakdowns are frequently mislabeled as “tantrums,” leading to punishment or isolation rather than comfort and co-regulation. Punishing a tantrum is abusive. Children who were punished for this involuntary release, are left with intimidation, not solutions. This can cause them to avoid other adults such as teachers, coaches, mental health professionals and even partners, later. 

Chronic Bullying and Ostracization: Frequently being mocked, excluded, or targeted by peers for missing subtle social cues.  As a result of what has happened on social media, the general public understands the profound effects and that it is extremely damaging. It is often worse for children on the spectrum. My experience is that these wounds are carried into adulthood.  

Professional  Disconnect: Being labeled as defiant, lazy, or combative by teachers and authority figures who misinterpret autistic traits such as a lack of eye contact or executive dysfunction, disconnects that child from much needed support and comfort. I refer to this as, “disconnection” , because emotional connection to others is crucial to mental health and because it affects learning. When people present for counseling, it is almost a given that they feel disconnected. For the young, it can be an untenable position.

Medical and Mental Health Misdiagnosis

Before finding out they are autistic, many adults spend years cycling through the mental health system receiving treatments that don’t quite fit.

The “Wrongly Diagnosed” 

I have taken the liberty of borrowing this terminology, “Wrongly” from our legal system, which has agencies for those who are being punished for something they did not do. The public often finds out about them  through TV shows like, “ Law and Order”, “When They See Us”, “True Crime News” and many others. The Wisconsin Innocence project, Equal Justice Initiative, Center For Wrongful Conviction, and state departments for Review, etc. are established across the country. Some of the worst damage has been done when parents have sought help at the school and been told that their child is “oppositional”, too young to diagnose, or that a child is, “oppositional” which could not be farther from an appropriate view. Often these parents are wondering if they too are on the spectrum. I have been told that a parent was told he was too old. When someone reaches out for help in this way, it is possible that it took them a long time to have the courage, only to be dismissed.

Sometimes a partner has exerted all of their patience in supporting their spouse to be open to the idea that some things are not their fault, because they seem to be autistic. They have encouraged their loved one to seek a professional opinion, which has sometimes been met with hurt or anger. Both of these partners need and deserve all of the support they can get. It is a special situation for a couple, possibly a vulnerable moment for the relationship itself, which can be difficult and painful, but conversely an inspiration and a relief when navigated with experienced guidance in an atmosphere of emotional acceptance. For others, it has even been called, “the Diagnosis we love to get.” When it is missed, it is a mistake; a misdiagnosis.

Children, adolescents, and adults whose diagnoses are inaccurate, experience punishment that is equally damaging. When this occurs, it is one of the most painful and damaging parts of growing up autistic. 

Common misdiagnoses are: Generalized Anxiety Disorder, Major Depressive Disorder, Borderline Personality Disorder (BPD), Oppositional Defiant Disorder, PDD, (Pervasive Developmental Disorder)mood disorders and in rarer cases serious mental health disorders like schizophrenia, schizoaffective, etc. These are inappropriate. When someone is on the spectrum,  a special individualized treatment plan which continually assesses areas and behavior that is connected with or caused by autism is necessary. The very common approach called, “CBT” is usually actually destructive. 

Engaging in therapies (like standard CBT) that might inadvertently gaslight the patient by challenging “irrational thoughts” that are actually very accurate perceptions of their neurodivergent reality. 

I often think I would not have clients at all, if it were not for those injured by our mental health system. Be it ineffective therapy or therapists, clients have related to me how they were told they were lacking in some way. They have sometimes been told that it was their fault they did not do better in therapy, when the therapy did not address being on the spectrum at all.   

In their book “Is This Autism?”, Donna Henderson, Sarah Wayland and Jamell White, wrote what I found to be unprecedented. The problem of appropriate treatment is addressed for the first time to my satisfaction. They wrote, 

“We have countless clinicians who confide that they are confused and intimidated by autism.” There is now research to support this observation, suggesting that many therapists have misconceptions about autism, have received significantly less education about autism than other diagnoses, and often do not feel confident to work with autistic clients.

These studies are consistent with reports from autistic adults who describe difficulty accessing diagnosis and treatment. They report that the most frequent reason mental health professionals declined to take them as clients is the professionals lack of knowledge about autism. Autistic adults also reported mental health professionals have difficulty understanding that their physical and mental health challenges are often related to their autism.” 

In short autistic individuals do not have the same access to care as non-autistic individuals and healthcare professionals. The juxtaposition of finally receiving a diagnosis in adulthood, only to face barriers and frustrations in finding appropriate and useful support, shows the dire need for changes in healthcare.