Adult Autism for those who suspected later…

“Some of us were left behind…”

Many of us grew up before anyone was looking for us. The author of this page and the owner of AutisticOrNot was born in 1978, male, UK. This is right in the middle of the period where testing was rare, many were dismissed and the term wasn’t known at all in many social circles.

School reports said bright but difficult, sensitive, distracted, intense, shy, disruptive, anxious. Careers drifted or stalled for reasons nobody could quite explain. Relationships were confusing. Everyday life took far more effort than it seemed to for other people. Yet because we spoke well enough, coped just enough, or learned to copy the people around us, we passed through childhood without being recognised.

The system was not designed for adults who learned to survive by adaptation. Diagnosis pathways still TODAY focus on children, clear presentations, and tidy histories. Real lives are rarely tidy. By the time many of us began asking questions, we had jobs, partners, families and responsibilities, but no language for why ordinary things felt exhausting or overwhelming and always had.

This space exists for people who suspect they were missed. And there are so many of us.

AutisticOrNot and this section were created by autistic adults who have lived decades without a framework, then slowly built one. We are not here to label anyone or replace clinical care. We are here to help you reflect, understand patterns, and decide what fits your experience. That’s your right and something we wish we had back then. If nothing ever quite made sense, you are not alone, and you are not imagining it.

This page has been reviewed by autistic adults.

Sometimes it’s not just anxiety…

 

Some were the children who did well on paper. They read early, memorised facts, followed rules, and rarely caused disruption. Teachers described them as mature or self contained. What was not seen was the cost. Lunchtimes spent alone, scripts prepared before conversations, panic at small changes, and exhaustion after holding it together all day. As adults they often become competent professionals who cope publicly and collapse privately, wondering why life feels like constant translation.

Others were the social ones. Chatty, friendly, even funny. They learned people by observation rather than instinct, building personalities from borrowed pieces. Because they could talk, nobody looked further. Yet friendships felt fragile, misunderstandings repeated, and burnout arrived early in careers that depended on reading a room they never truly read. Many were told they were too sensitive, dramatic, or overthinking, and learned to apologise for reactions they did not understand.

Then there were those labelled difficult. The anxious child, the defiant teenager, the adult cycling through jobs or relationships. They were treated for behaviour, mood, or motivation, rarely for processing. Noise hurt, plans changed without warning, and demand felt like threat. Support focused on fixing attitude rather than recognising difference. Decades later, many are still searching for an explanation that fits better than every label they were given before.

Adult Autism Information

  • Autism is a lifelong neurodevelopmental difference. It affects how people communicate, process information, and experience the world. Autism is not an illness or something to be cured. It is simply a different way of being. Traits often include differences in social communication, sensory experiences, and repetitive or focused behaviours. Every autistic person is different, which is why we call it a spectrum. It is life long and does not come and go.

  • ASD is the current medical term used in most formal settings. It appears in the DSM-5 (used mainly in the United States) and the ICD-11 (used worldwide by the World Health Organisation). ASD replaced older separate diagnoses such as “Autistic Disorder,” “Asperger’s Syndrome,” and “PDD-NOS.” Today, all of these are considered part of one spectrum. The word “disorder” is controversial, and many autistic adults prefer simply “autism” or “autistic.”

  • Until 2013, Asperger’s was often diagnosed separately, usually given to people who showed autistic traits but did not have significant language delays or intellectual disability. Under DSM-5 and ICD-11, Asperger’s is no longer used as a separate condition. Instead, it is recognised as part of the autism spectrum. Many adults still identify with the word “Asperger’s” because it reflects their personal history, and that is completely valid.

  • Autism has always existed, but for a long time it was not widely recognised or understood. The way society has seen autism has changed a lot over the last century. Public and private testing has improved but with the improvement has come long waiting lists and high costs for clinics. AutisticOrNot is another option for those who do not need or want a clinical certificate but still seek clarity as an adult (especially having already completed education or beyond specific assistance needs).

  • From the 1990s onwards, diagnostic manuals began to widen the definition of autism. Terms like Asperger’s Syndrome gave recognition to people with fewer language delays, though this label was later absorbed into Autism Spectrum Disorder. With these changes, more people started to receive diagnoses, especially in adulthood.

    If you grew up in the 1970s, 1980s, or 1990s, it is very likely that autism was not recognised in your school or community unless it was very obvious. Many adults taking tests like this today are discovering autism for the first time because the knowledge simply was not available when they were children.

  • The short answer is that no single cause has been found. Autism is understood today as a neurodevelopmental difference that begins in early brain development. Scientists agree that it is shaped by a combination of genetic and biological factors.

    Genetics

    Research shows that autism often runs in families. Large genetic studies suggest that many different genes are involved, each contributing a small effect. This means there is no “autism gene,” but rather a complex set of genetic patterns that make the brain develop differently.

    Brain development

    Brain imaging and developmental studies show that autistic brains process information and connect networks differently from early childhood. These differences appear before a child is old enough for outside influences to play a major role, which supports the understanding that autism is innate.

What does NOT cause autism: It is equally important to be clear about what does not cause autism. Scientific studies have consistently shown that:

  • Vaccines do not cause autism. This idea has been thoroughly disproven and is considered harmful misinformation. Sorry Mr Trump but this is a dangerous suggestion that belongs in the past.

  • Parenting does not cause autism. In the past, some believed “cold” or “refrigerator mothers” were responsible, but this theory has been rejected completely.

  • Trauma does not cause autism. Trauma can create behaviours that look similar to autism in some areas, but autism itself is a neurodevelopmental difference present from early life.

For those left behind.

Today’s world is incredibly hard for those adults missed by autism diagnosis opportunities. We’re doing our part to help.

Living as autistic adults in the modern world…

  • Many adults first arrive at the idea by accident. A child is assessed, a partner shares an article, or a late night search about burnout leads somewhere unexpected. At first it feels unlikely. Then familiar patterns begin to line up across decades, and the relief sits beside grief for how long it went unnamed.

  • Some people start understanding or suspecting autism with sensory changes rather than identity. They swap harsh lighting for softer bulbs and notice immediate and significant relief, choose clothes by texture, or schedule recovery time after social events. Nothing dramatic, just small adjustments that suddenly make ordinary days manageable in a way they never were before. Some people make these changes BEFORE understanding that autism also describes them for many adults living without a diagnosis or clarity.

  • Others begin to understand autism through their own communication. They notice how much effort goes into guessing tone, timing replies, and rehearsing conversations. Learning to ask direct questions and accept direct answers reduces conflict and removes a layer of constant vigilance they assumed everyone lived with. This is especially difficult in the work environment for some. Many have “masked” for years or worked out strategies to cope. Or, more often, lost jobs, failed interviews or even broken friendships due to this difficulty.

  • Work is often the turning point for many adults considering if they have autism and then, when gaining that clarity, making changes. If you suspect you have autism, a report like ours also contains specific identification of sensory issues and work processing. Clear expectations, written instructions, and predictable routines can transform performance. Many discover they were never incapable or “unduly stressed”, only operating without the structure their brain naturally needed. Productivity improves once the environment matches the person. It should for everyone with or without autism but this is not an equal world.

  • Friendships also change shape when we realise we have autistic traits. Instead of large, frequent gatherings, some choose fewer people and longer gaps between meetings. Relationships become steadier because they are no longer built on endurance. Energy is spent on connection rather than recovery. This is a common switch for many who have been through the AutisticOrNot reflection programme and the founder has documented his own experience in this area deeply on our facebook page.

  • For some, formal diagnosis matters. It offers access to legally bound workplace adjustments, healthcare understanding, or simple validation. It’s also critical for children to access educational support. For others, reflection and practical change are enough. The goal is not a certificate for all but a framework that explains experience. Some claim that the term autistic ONLY belongs to those in a medical setting. This is not true. Every human deserves clarity and many autistic adults invest incredible time and effort into formal research whilst waiting or being excluded from the clinical option by cost or geography. More people understanding their own link to autism takes nothing away from those who were diagnosed generationally or today. Understanding and clarity grow in a fair and positive world, rather than diminish. We believe every human has the right to see the questions, foundational science, notes and real life experience that can and should be shared to all, in a way that many more can access and reflect on.

  • Modern life adds a new layer to an already complex experience. Constant messaging blurs boundaries, social media rewards performance over clarity, and tone is judged at speed. Many autistic adults prefer precise communication yet are expected to imply, hint, and react instantly. Dating apps compress connection into rapid decisions, while discussions about consent, desire, and intimacy often rely on unspoken signals rather than explicit agreement. Technology can help by offering space to think and communicate in writing, but it can also overwhelm through endless input and comparison. Learning to set response times, choose platforms carefully, and speak plainly about needs, attraction, and limits allows relationships and sexuality to become safer and more genuine rather than a guessing game played at digital pace.

    Additionally, those of us who are already older may not have access to our parents or early year teachers to actually report on our childhood traits. This new world and the old are not the same. Foundational science has been extended with lived experience in this project and others to reflect that reality.

Further help

Trauma & Mental Health

Autism is not the only explanation for feeling different for a long time. Post-Traumatic Stress Disorder (PTSD) can create lifelong patterns that mimic parts of autism. Both can involve social withdrawal, sensitivity to sound or crowds, and reliance on routines for safety. Unlike autism, PTSD traits usually follow specific traumatic experiences, and symptoms often change over time. Dissociation is another response to trauma where people feel detached from themselves or their surroundings. It can resemble autism in sections such as Social Communication (difficulty connecting), Sensory (numbness or altered perception), or Camouflaging (hiding distress). The difference is that dissociation is a protective state the mind uses after trauma, rather than a lifelong neurodevelopmental pattern.

Autism and ADHD also often overlap. Many people are diagnosed with both, and some traits can look similar, such as difficulty focusing, social timing issues, or problems with organisation. Our test does not measure ADHD directly, but if your results suggest strong differences in areas like executive function or focus, ADHD may be worth exploring alongside autism.

Mental Health Support

Mind UK
National mental health charity with resources on trauma, anxiety, and co-occurring conditions.
https://www.mind.org.uk

Substance Abuse and Mental Health Services Administration (SAMHSA)
Provides U.S. resources and treatment locators for trauma and mental health.
https://www.samhsa.gov

Sidran Institute
Specialises in trauma, PTSD, and dissociation education and resources.
https://www.sidran.org

If you or anyone you know are in need of medical attention, please call emergency services immediately. This website is not a replacement for medical advice of any sort.

Autism Support Charities

National Autistic Society
The UK’s leading autism charity, offering information, helplines, and services for both children and adults.
https://www.autism.org.uk

Autism Alliance UK
A network of autism charities providing local and specialist support across the country.
https://www.autism-alliance.org.uk

Ambitious about Autism
Supports autistic children and young people through education, services, and advocacy.
https://www.ambitiousaboutautism.org.uk

Autism Independent UK
Provides advice and resources for autistic adults and their families.
https://www.autismuk.com

Autism Society of America
A long-standing nonprofit providing nationwide services, resources, and community support.
https://autismsociety.org