Dr. Vera Bernard-Opitz
There is a heated debate regarding the diagnostic label „Autism Spectrum Disorder“ (ASD) and the term „Neurodiversity“ (ND). The following blog tries to clarify some of the misunderstandings and find some common ground.
What is the history of Neurodiversity and its relation to Autism?
What ist the agenda of the „ND-Movement“?
Why is there a divide in parents and researchers from both „camps“?
What are possible solutions?
What is the history of Neurodiversity and its relation to Autism?
"Old wine in new glasses?" Minimal cerebral Dysfunction and Neurodiversity
When I was a student at the University of Göttingen, Prof. Erna Duhm, Head of Clinical Psychology, went through the rows of students counting in blocks of three. She mentioned that every third person has a „Minimal Cerebral Dysfunction“ (MCD). I was reminded of my deficit in remembering directions, while others complained about losing their attention easily, being disorganized or having a diagnosis of dyslexia. Prof. Duhm made clear that MCD affects the higher functions of the brain and should not be confounded with major brain damage. It is associated with ADHD and learning disorders, such as Dyslexia and Dyscalculia. She mentioned that problems can be reduced with a clear diagnosis.
Fast forward to 1997, when the term „Neurodiversity“ was coined. Judy Singer, an Australian sociologist, who described herself as being on the Autism Spectrum, went beyond the MCD notion. She also described a high frequency of diversity in behavior, thought and emotional processes in the neurotypical population, but stressed in addition, that people with „different brain wiring“,were often treated unfairly. She argued that diversity is normal and can be enriching and demanded that conditions classified as mental disorders should be considered as differences rather than illnesses requiring a medical diagnosis.
In retrospect Judy Singer recognized that her mother, who had been a holocaust survivor, and herself showed odd or eccentric behavior. While she considered her mother’s behavior unusual, it seemed likely related to her traumatic experiences and did not conform to any other diagnoseable illness. Even her young daughter showed unexpected behavior patterns, being more interested in playing with leaves instead of peers. On the other hand, she was a very cheerful and affectionate child. While having slightly different characteristics, all three family members did not match the picture of Kanner‘s Autism known at that time.
In 1943 the Viennese psychiatrist Leo Kanner described a group of young children who were mainly non-verbal, socially withdrawn and often intellectually disabled. He established the diagnostic category “Kanner Syndrome” or “Early Infantile Autism”.
In 1981 things changed after Lorna Wing introduced the concept of Asperger’s Syndrome to the English-speaking world. Judy Singer recognized that Asperger’s was much closer to her family issues since individuals had normal or even above-normal intelligence and adequate language.
What is the agenda of the „ND-Movement“?
With the rise of the internet Judy Singer created the neurodiversity movement. She considered it as a political movement comparable to other oppressed communities. The ND proponents demanded tolerance and support from society instead of change of the individual. Some questioned the term „disorder“, and instead elaborated on advanced unusual skills of their community. They would rather see the general society be more tolerant about unexpected/odd/queer behavior of affected individuals than therapies stressing behavior or cognitive change.
The ND movement has obviously piggy-backed on the widespread public interest and media trend for groups with different kinds of divergence. Talks and books now tend to focus on self-diagnosed individuals with high-functioning autism or Asperger’s while taking the space for Kanner’s original autism group. The diagnosis “Asperger” has often become a fashion label (see also https://www.autismnewseu.com/en/post/fashion-diagnosis-asperger).
Recently a “Global Autistic Taskforce” (GATFAR) has criticized a Lancet article supported by top scientists (Lord et al, 2022) for not including individuals with Autism/Neurodiversity in the selection of research programs. Instead of focusing on individuals with a classical autism diagnosis, medication and behavior intervention, they demand research emphasis on mental health, poverty, access to services etc. (Rodrigez Mega, Nature, 2023).
Why is there a divide in parents and researchers from both „camps “?
It can be argued that ND can be considered an umbrella term for both ends of the Autism Spectrum as well as known learning disabilities, such as ADHD, Dyspraxia, Dyslexia and Dyscalculia. When even including associated problems under this umbrella such as Stress Intolerance, boundaries to neurotypical behavior get obscured and concrete help for specific groups gets replaced by tolerance for a big melting pot.
Staying within specific diagnostic categories has made it possible to offer concrete adaptations for children and students on the Autism Spectrum as well as students with ADHD, intellectual disabilities or specific learning issues. Simplified learning material, visuals or increased test support has become a right for affected individuals in educational settings and often workplaces. Positive behavior support, behavior and cognitive therapies have been provided for many children, teenagers and even college or university students with a clear diagnosis. Where this is missing, individuals seem to fall through some gaps.
And there is also the other side: Parents and teachers of non-verbal or semi-verbal children, teens and adults with Early Infantile Autism and low IQ often face daily challenges with severe behavior problems, lack of self-help, play and leisure skills as well as social isolation. While many receive help through behavior interventions, such as ABA/ABT, these therapies have been officially criticized by some highly verbal speakers for the ND movement. The critique focusses on questioning learning laws, quoting outdated aversive interventions as well as confounding behavior change with attempts to change the personality of the child/student/client.
Unfortunately, the obvious lack of understanding of the problems of individuals with a high demand for therapy and support as well as misinformation about ABA/ABT have made it difficult for parents and affected individuals to feel supported within the NB community. It cannot be excluded that incompetent, self-proclaimed “behavior-therapists” and lack of adequate supervision has led to some questionable behavioral treatments. These definitely are not within the ethical guidelines of the overseeing professional BCBA or IBA boards. Report of misconduct to these boards is therefore encouraged. (https://www.bacb.com/wp-content/uploads/2022/01/Ethics-Code-for-Behavior-Analysts-230119-a.pdf https://theibao.com/ethics).
On the other hand, spreading misinformation by NB members and rumors can jeopardize developmental opportunities for young children and individuals with severe problems and hopes for a more “normal life” by their families. Even though there is wide acceptance of Evidence-Based Therapies for individuals with autism and organizations, such as the American Academy of Pediatrics. Sadly, through misinformation by so-called “Aspies” funding for services has sometimes been blocked.
Members of the “Collaborative on Science and Reason in Autism” have argued against the above critique and pointed out that ABA tries to improve the lives of people with Autism and their families by focusing on their needs and strengths aiming at independence, self-determination, communication and social skills (see also Lang, 2023). (see Facts and Fiction about ABA/ABT: https://www.autismnewseu.com/en/post/fact-or-fiction-aba-abt).
What are possible solutions?
Obviously both involved groups want to be accepted and supported by society, which is a joined basis. The needs of children and their families with severe challenges requiring intensive behavior support shouldn’t be jeopardized by individuals, who are questioning Evidence-based treatments and behavior change. On the other hand, defined subgroups within the ND movement, such as students with learning disabilities require special programs and these have a clear behavior basis. Also, individuals on the wider ND spectrum often want change through various forms of intervention, such as skill training, stress reduction or cognitive behavior interventions.
Instead of disputes within the community, support for each other can make the movement more credible and stronger. To get research attention, basic research on core groups shouldn’t be questioned. We need to know more regarding the diagnosis for subgroups within the heterogenous ND group; we need more knowledge regarding the genetic makeup as well as neuronal circuits, which make life difficult for affected individuals as well as medications and therapies for everybody who wants change. And this is not to question claims that the wide spectrum of individuals with “different brain wiring” shouldn’t get the tolerance that we all want – and here I would like to remind of the count in groups of three by Prof Duhm regarding Minimal Cerebral Dysfunction. Many of us are sitting in the same boat, even though each may need a different kind of direction and different support systems or therapeutic services.