XANDRA H
I am often asked what I think about the rise in autism diagnosis over the last few years and if it is really true that more people are being born autistic than in past times or are the medical profession just better at diagnosing it, or even over diagnosing it.
Mental and developmental health, and what constitutes it, is a complicated problem which is affected by, amongst other factors, the social climate that we live in. It is important to bear in mind that long term stressful social circumstances can lead to all sorts of “odd behaviour” that could be classed as a developmental or mental health disorder in children and adults according to today’s criteria. However, when circumstances change, these behavioural expressions change too because they are not part of a lifelong problem, but an individual’s way of coping with current personal and societal pressures and challenges.
With regard to autism, it is important to look at two things. Firstly, what autism is described as in its original form and secondly, the rise of the DSM (diagnostic and statistical manual for mental health), from a set of agreed guiding principles for psychologists and psychiatrists when diagnosing problems, to a check list to be adhered to when assessing a patient.
Autism is considered a developmental disorder because it prohibits the organism developing in a way one would expect of the species. But it is not only social disadvantages that cause problems for autistic individuals. The external environment in general is problematic. Sights and sounds that to non- autistic individuals seem ordinary or just background, are intolerable to them, and seem fragmented because they cannot make “the whole”, out of what they see outside themselves. Severely affected individuals do not develop speech and external stimulation of any kind is unbearably painful and frightening to them. By the time they are two to three years old, they have usually completely withdrawn as a form of self protection.
Bleuler, Sukarhever and Kanner did early work on identifying autism and separating it from schizophrenia as a distinct condition. Asperger later on identified a similar, but not as specific a set, of behaviours for which he is well known. The DSM’s treatment of autism has changed dramatically over 70+ years, from a single word buried under childhood schizophrenia to a fully defined neurodevelopment spectrum condition. The evolution of autism in the DSM is given below:
DSM‑I (1952) — Autism as a Symptom of Schizophrenia
• The word “autism” appears only once, and only as a feature of childhood schizophrenia.
• Autism was conceptualised as withdrawal from reality, echoing Bleuler’s 1911 use of the term.
DSM‑II (1968) — Still Under Schizophrenia
• Autism again appears only as part of “schizophrenia, childhood type.”
• No independent diagnostic category.
• Still framed as a psychotic disorder of childhood.
DSM‑III (1980) — Autism Becomes Its Own Diagnosis. This is the first time autism is formally recognised.
• Introduced “Infantile Autism” as a distinct disorder.
• Placed under Pervasive Developmental Disorders (PDD).
• Focused criterion: social withdrawal
• communication impairments
• restricted behaviours
• onset before 30 months
Why it mattered: This is the birth of autism as a diagnostic category.
DSM‑III‑R (1987) — Broadening the Concept
• “Infantile Autism” becomes “Autistic Disorder.”
• Criteria broadened, increasing the number of children who met the diagnosis.
• Removed strict onset-before-30-months requirement.
Impact: Prevalence rose — not because autism increased, but because the definition expanded. This enabled children who had shown normal development past the 30-month point and then started to regress, to qualify for this diagnosis. It also led to other possible reasons often being discounted.
DSM‑IV (1994) and DSM‑IV‑TR (2000) — The Era of Subtypes
Because of this problem with widening, the DSM‑IV introduced five separate PDD diagnoses:
1. Autistic Disorder
2. Asperger’s Disorder
3. PDD‑NOS (Pervasive Developmental Disorder – Not Otherwise Specified)
4. Childhood Disintegrative Disorder
5. Rett Syndrome
Why it mattered: This created the “subtype era,” but also confusion and inconsistent diagnostic practices.
DSM‑5 (2013) — The Spectrum Model; A major reorganisation.
• All PDD subtypes were merged into Autism Spectrum Disorder (ASD).
• Introduced two core domains:1. Social communication and interaction
2. Restricted, repetitive behaviours
• Added severity specifiers and support‑needs levels.
• Introduced Social (Pragmatic) Communication Disorder for cases without repetitive behaviours.
Impact: This was the most controversial change, but it aligned with some research showing autism is dimensional, not categorical.
DSM‑5‑TR (2022) — Refinement, Not Redefinition
• Autism Spectrum Disorder criteria remain unchanged.
• Text updated to reflect newer more social research.
• Language made more culturally sensitive.
I think the most important point here is that the rise was due to the criteria expanding, which some argue led to a different set of diagnostic problems. Now autism is not only on a spectrum but is being classed socially as a “superpower” which contributes to the wellbeing of society in general. By seeking to de-stigmatise those who have the condition and by wrapping all odd or socially inept behaviours under the general term of autism; those that actually have it as a specific disorder are often ill served. Far from making things more explicit, diagnostic confusion still occurs.
If we go right back to the beginning of this timeline, we can see how autism has gone from being a specific condition diagnosable in early childhood to encompassing anyone who is awkward or behaves oddly in social situations. This has emerged by “including “ anyone who shows odd behaviour or feels internally restricted in some way when encountering others, including family members.
Autism, as it was first discovered, was classified as infantile schizophrenia because of the fragmented and chaotic way the infant/child responded to the external environment. This caused acute distress to the sufferers as well as their parents and could not in any way be described as a superpower. These children were suffering and often could not be soothed.
Repetitive behaviour, head banging and withdrawal, inability to tolerate loud sounds and multiple voices were the child’s way of trying to cope with an external environment that seemed frightening and alien to them. However, some children, because of their repetitive and locked in behaviour became very good at some things. A small number of such children have become good artists, mathematicians and musicians, because they have concentrated only on that one aspect of life to the exclusion of everything else around them and have been lucky enough to have had this facilitated.
This also provides evidence that most children with autism are developmentally impaired and not necessarily cognitively impaired. Whatever it is that is standing between them and the external world is not affecting their ability to learn but is acting more like a blockage to expressing that learning to others in the normal way and making something of it for themselves. It is not known how much of this exceptional learning is due to finding an activity they can take comfort from and block out the world, and how much is genuine talent as ascribed to normally developed individuals. Perhaps it does not matter.
What does matter is that for every one of these, there are hundreds that do not find such an elegant way of coping with the external environment and yet the current response to autism is to see all people with this condition almost as misunderstood geniuses or following alternative ways of seeing the world and that it is society’s fault for not understanding their differences. My personal test, which is not in any way an agreed protocol, is to see if they can understand a joke. If they can, in my opinion they are not autistic and any problems are a result of something else.
In the late nineties, psychology training started to focus more on the social rather than biological aspects of mental illness, which mirrored the changes in the DSM. Although social circumstances have always had an influence on mental health conditions, the slow takeover of psychology by sociology has meant that all problems concerning mental health were seen from a sociological perspective. The teachings of Foucault in particular have influenced sociology greatly. He would opine that “madness”, or mental health problems are only social constructions and there is no agreed definition of what constitutes the correct mental health to measure it by.
Whilst there is a certain amount of truth in this when considering aspects of mental health at the margins, there is no doubt that there are developmental disorders and mental illnesses that definitely do not constitute alternative lifestyles and ways of being in the world, which the sufferers would very much like to go away. Many people who have either acute anxiety, an all pervasive phobia, OCD, generalised social anxiety or other anxiety based problems now feel that they locate on the autism spectrum and can usually fill enough of the expanded criteria to attain a diagnosis. The use this fulfils in making their lives less stressful seems to be that instead of working through their anxiety problems; they can demand exceptional treatment from society. Thus, their anxiety becomes societies problem and not their own. ADHD has gone down a similar route; but we can look at that another day.
There is no doubt an explosion of adults claiming undiagnosed autism, which is most troubling considering the appalling lack of facilities for autistic people once they leave childhood.
In my opinion and looking back at the history of the DSM, they should not have rolled all PDD’s and odd behaviours into one spectrum. It makes it more difficult to get the right treatment for those who are autistic and it stops people who are not autistic, but maybe have a bit of an odd personality, or are acutely anxious, from getting treatment that might help them overcome their non-autistic problems.
