Definition: What is commonly referred to as Autism, is clinically described as Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects communication, behavior, sensory experiences, and social interaction in different ways from person to person. While clinical definitions help describe autism, lived experiences often reveal a broader and more personal picture. Other historically popular names include Aspergers, infantile autism and autistic physiopathy.
Autism History
The word “autism” didn’t begin as a diagnosis. It started in 1911, when Eugen Bleuler used it to describe something he observed in people with schizophrenia, a turning inward or a retreat into one’s inner world [1] [3] . At the time, it wasn’t understood as its own condition. It was just a symptom associated with another disorder.
Another contributor, Grunya Efimovna Sukhareva (Груня Ефимовна Сухарева), was already noticing something that didn’t yet have a shared name. In her 1925 and 1926 papers, she described children with what she called “schizoid psychopathy,” highlighting traits such as deep focused interests, differences in social interaction, and heightened sensory responses [8] [*] . She later refined her observations when working with girls, updating the term to “autistic psychopathy.” [8] [*] Although her work was highly detailed and remarkably early for its time, it was not widely recognized internationally during that period.
In the 1940s, Hans Asperger documented children who communicated and interacted differently from expected social norms of the time. They interacted with the world in ways that stood out. His work, published in 1944, helped shift the conversation. His work argues that autism wasn’t simply symptoms of another disorder, but part of a distinct way of developing and experiencing the world[2]. Over time, his observations became associated with what many came to know as Asperger’s syndrome.
Around the same time, Leo Kanner published a landmark 1943 paper describing what he called “early infantile autism” [2] . His work contributed to recognizing autism as a distinct clinical condition, separate from other psychiatric diagnoses. Kanner described several shared characteristics among the children he observed, including differences in social interaction, a strong focus on objects, repetitive behaviors, differences in language, and what he described as an “anxiously obsessive desire for the maintenance of sameness.” [2]
However, understanding develops gradually over time. It often progresses step by step and may involve some obstacles along the way. As we acquire more knowledge through research, personal experiences, and medical advancements, our perspectives on autism have also evolved and expanded.
It wasn’t until 1980 that autism formally appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III) as “Infantile Autism” [5] . As research grew and perspectives shifted, so did the language. The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) expanded categories like “Autistic Disorder” [6] , reflecting an attempt to better capture the range of experiences being observed.
Autism Defined
The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) introduced the term “Autism Spectrum Disorder (ASD),” recognizing something many individuals and families already understood: autism isn’t one single, fixed presentation but a spectrum [7] . That language continues today in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) [4] .
What started as a misunderstood concept tied to severe psychiatric illness has gradually become recognized as a neurodevelopmental difference varying from person to person.
Today, clinical definitions still matter. Autism Spectrum Disorder is described as “characterized by persistent deficits in social communication and social interaction across multiple contexts,” along with patterns of restricted or repetitive behavior [4] . Additionally many other conditions both occur with ASD or look similar to, making diagnosis difficult. Diagnosis such as ADHD occurring with Autism wasn’t even possible until recently. Clinical definitions can assist individuals with autism in understanding their strengths and challenges, providing guidance to help them navigate a world that may not always be tailored to their needs.
Severity Levels
With the new update to Autism Spectrum Disorder in the DSM, additional severity levels were added to help describe the amount of support the individual may require within their daily life. These levels are not meant to define their intelligence, worth, abilities or potential. It was designed to help clinicians further define Autism within the spectrum to provide more individualized support for their communicative differences in social communication challenges and restricted or repetitive behaviors while recognizing that autism presents differently from person to person.
Each individual support needs are unique and may also change depending on environment, stress, communication demands, sensory challenges, and available accommodations.
Here is a partial copy of the 2022 DSM-5-TR Severity Levels and descriptions are as followed:
Level 1: Requiring Support
“Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. “ [4, p58]
“Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.” [4, p58]
Level 2: Requiring Substantial Support
“Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. “ [4, p58]
“Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.” [4, p58]
Level 3: Requiring Very Substantial Support
“Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.” [4, p58]
“Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action. ” [4, p58]
A typical person may have difficulty understanding what these levels mean. This is why many who suspect they or a loved one may have autism should seek professional help to fully help understand this condition and how it may relate to them or to their loved ones.
What Autism Can Look Like in Everyday Life
Clinical definitions only tell part of the story as ASD isn’t just something written in a manual rather it is something lived.
To some, ASD may look like:
- A child who avoids eye contact
- A child that seems to have no interest in social activities
- Someone who prefers routines or sameness
- A person who communicates differently
One common misconception is that the symptoms of ASD always look the same. In reality, the presentation of the symptoms vary widely between individuals. Many of those diagnosed with ASD many not match the common stereo types and sometimes it looks like the following:
- A parent noticing small developmental differences over time
- Someone masking their behaviors to fit in by appearing social expectations
- Internal overwhelm that others may not see
- Internal struggle to do what others seem to do with ease
From the outside, ASD can be misunderstood or oversimplified. Formally, it is defined through a specific criteria. Internally, however, it is a deeply personal experience that varies from person to person.
A child who does not display hand flapping (a typical sign) but runs often when excited or happy does not fit into stereotypical ASD description. Neither does a working, financially stable adult that prefers to stay at home that is predictable and less crowded.
Often ASD individuals hear responses such as “you don’t look autistic” but the truth is autism does not have a “look”. It is known to be difficult to distinguish clinically due to the overlapping criteria within other diagnoses. It even has a history of being misdiagnosed because of this. Therefore, it can be reasoned that, to an average person, this may be even more challenging.
ASD is like a colorful, spinning sculpture. A detailed artwork that shows new and interesting details to anyone who takes the time to really look.
However, to each person who sees it, the picture is different, shaped by their own point of view, experience and knowledge. It’s a beautiful and complicated mix of colors and shapes that are always changing, encouraging us to look deeper and appreciate what makes each of us special in our own way.
Although researchers and communities have learned a great deal about autism, there is still more to understand about its cause, related conditions, and a wide range of lived experiences associated with it. As the research continues to grow, the perspective of autistic individuals, caregivers, clinicians and researchers will help shape how autism is understood today and the future.
References
- Evans B. (2013). How autism became autism: The radical transformation of a central concept of child development in Britain. History of the human sciences , 26(3), 3–31. https://doi.org/10.1177/0952695113484320 .
- Czech H. (2018). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular autism , 9, 29. https://doi.org/10.1186/s13229-018-0208-6
- Bleuler, E (1911) Dementia Praecox: Or the Group of Schizophrenias. International Universities Press.
- Diagnostic and Statistical Manual of Mental Disorders , Fifth Edition, Text Revision. Washington, DC, American Psychiatric Association, 2022
- American Psychiatric Association. (1980). Diagnostic and statistical manual of mental disorders (3rd ed.).
- American Psychiatric Association. (2000). D Diagnostic and statistical manual of mental disorders (4th ed., text rev.)https://doi.org/10.1176/appi.books.9780890420249.dsm-iv-tr. .
- American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596 .
- Sher, D.A., Gibson, J.L. Pioneering, prodigious and perspicacious: Grunya Efimovna Sukhareva’s life and contribution to conceptualising autism and schizophrenia. Eur Child Adolesc Psychiatry 32, 475–490 (2023). https://doi.org/10.1007/s00787-021-01875-7 .
Psychopathy Note: When Sukhareva’s paper was written, the word “psychopathy” was used to describe certain ways of thinking, social ways of behaving, and personality traits. It didn’t refer to the modern idea of violence, deceit, or criminal actions often linked to the term today.
Disclaimer
The information provided on this website is based on my personal experiences or information gathered at the time the post was created. It is not intended as professional advice in any field, including but not limited to medical, legal, or financial advice. I am not a licensed medical professional, attorney, or financial advisor, and the content should not be construed as such. Readers are encouraged to consult with qualified professionals before making any decisions based on the information provided. By using this site, you agree that I am not responsible for any actions taken based on the information found here.
Frequently Asked Questions
Is autism spectrum disorder or ASD a mental illness?
No. Autism is classified as a neurodevelopmental condition rather than a mental illness.
Can autism look different in adults and children?
Yes. Autism traits often appear differently based on a range of factors such as age, environment, coping strategies, and support needs.
Can autistic individuals live independently?
Sometimes. This varies for many on the ASD scale as their support levels differ widely. However, there are many autistic individuals who live independently, while others may need varying levels of support throughout life.