Lauren K. Hickman, 2023Clinical Intern at Nova MHS The term neurodiversity was coined in 1998 by Judy Singer. At the time she was an Australian sociology student, a mother to and a daughter of neurodivergent individuals. The revolutionary recognition that everyone’s brain develops uniquely has shifted the diagnostic narrative. No two brains, just as no two fingerprints, are alike. As autism diagnosis has increased since the 1980s, there are heated debates about which came first: is autism increasing? or do we have better diagnostic criteria to recognize autism sooner? The anti-vax movement in the late 1990s did much damage in widely spreading rumors that autism was caused by childhood vaccinations. Though the pervasive theory was debunked numerous times, the blame lives on. It is the opinion of this author that blaming vaccines for creating a divergence from the neurotypical narrative is a form of ableism.
Ableism has been problematic forever. In ancient history courses, we learn that the Spartans threw out their weak infants; from occult studies, the false myth of the changeling and the resulting infanticide of a disabled child. The delusion of normalcy results from patriarchal and capitalistic values. We live in a culture that sings praise for individualism, yet demands conformity. Neurodivergent children and adults who struggle to meet “normal” standards of behavior may be criticized or subjected to harmful corrections. Additional support may be required to navigate a world designed for the neurotypical majority. Commonly, those under the neurodivergent umbrella are ostracized or othered by mainstream culture. Allistic people not accepting variance in behavior resulting from neurological differences demonstrates ableism. Seeking a “cure” for autism is probably the most problematic belief manufactured in the last twenty years. Autism Speaks, the largest autism awareness society in the United States, has been criticized on multiple occasions for framing Autism as a disease that needs to be fixed. Founded by Bob Wright of General Electric a year after his grandson was diagnosed, power players like Home Depot Founder Bernie Marcus donated $25 million to the organization. They fund the Autism Genetic Resource Exchange, a DNA repository for autism research. I’d like to note that the predecessor organization affiliated with the genetics lab was called “Cure Autism Now,” creating an immediacy surrounding the “problem” of neurodiversity. On two occasions, Autism Speaks has been called out for producing what could be considered propaganda videos, framing Autism in a negative light. The shorts Autism Every Day (2006) and I am Autism (2009) were both pulled from the website for the handling of the portrayal. The producer of Autism Every Day was found to have instructed the families portrayed to not comb their hair or vacuum or have a therapist present to truly capture the difficulties of having autistic children— clear manipulation of the subjects. This organization with its puzzle-piece logo has major influence and financial power, making it one of the first organizations to populate a Google search on neurodiversity or autism. The puzzle piece provides a nod to “the problem” of autism, it was as recent as 2016 that they removed “cure” from their rhetoric. In the past, they based their model on the mainstream medical view that autism is a disease that “has taken our children away.” In response, autism activists counter the argument that they are “different but not diseased” and challenge the mainstream to reframe how they conceptualize these medical conditions. The Wikipedia page titled “Controversies in Autism” speaks to how highly polluted this field is in perception. Science has concluded that ASD is inheritable with genetic research, specifically in fraternal and identical twins. With that information in hand, autism activists are speaking out against genetic research and testing that suggests bias against autism and neurodiversity, alongside the scientific potential to wipe out a whole neurocognitive dimension of the human species. Other hot topics include the “treatment” of autism in children. Tayler Clark, MSW LCSW explained to me that Applied Behavioral Analysis (ABA) was being connected with trauma in adults who experienced the method of therapy. ABA encourages high masking behavior and is a rigorous and intensive therapy that involves around-the-clock behavioral corrections. This includes “reinforcing appropriate speech and actions, tallying rewards for everything done right and demerits for everything done wrong” (Solomon, 2008). ABA is the number one therapeutic suggestion for parents with autistic children. Positive outcomes for those caring for the child can be a decrease in meltdowns — but one could posit that that emotion is being internalized and repressed by the child. Camille Clark (blogger “Autism Diva”) shared with journalist Andrew Solomon in the 2008 New Yorker article The Autism Rights Movement that ABA’s goal was objectionable in that it was designed to make an autistic child “indistinguishable from his peers.” Camille continues that there is no way to train a kid to be “normal inside” using ABA training methods (Solomon, 2008). The US has come a long way since that 2008 article. Neurodiversity as an umbrella is inclusive of dyslexia, a diagnosis the article author identifies with. Neurodivergence includes ADD/ADHD (Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder), ASD (Autism Spectrum Disorder), Dyslexia, Dyspraxia, and other characteristics of neurodivergence such as Sensory Processing Disorder. “Diagnosis first" language has replaced the “person first” language of the past, elevating that the experience of Autism is central to a person's identity. Activists compare “a person with autism” to describing a man as “a person with maleness” (Solomon, 2008). Autism Awareness is now celebrated as an annual holiday (April 2nd), Autistic Pride Day (18 June), annual retreats, and celebrities in the media who disclose their autism diagnosis— Greta Thunberg being most notable. Just as with all post-woke subject matter, media portrayal continues to be in its early days of evolution. Reality Series like Love on the Spectrum may normalize and simultaneously patronize those with ASD. Atypical on Netflix included autistic actors (not the main character who is portrayed as such) and included autistic creative consultation throughout its production. This show was remarkable in centering the atypical in both neurodivergent awareness and bringing a nonbinary and pansexual character to the forefront of the story arch. The autistic main character comes out of his shell and his sibling comes out of their closet. The neuroqueer identity overlap is emerging into mainstream awareness. Sia, the famous songwriter, and singer, was criticized for producing a film with an autistic and nonverbal lead character portrayed by a neurotypical actress. The over-dramatized behaviors were problematic, to say the least. Sia apologized and some months later came out in public as having an autism diagnosis. The controversy surrounding Sia may or may not be worth paying attention to. Centering autism-informed portrayals is an important part of the movement, and employing autistic actors to portray these roles as well as provide representation. Autistic Self Advocacy Network is one such organization that focuses primarily on inclusivity, coining the phrase “Nothing About Us Without Us” —meaning that autistic people need to be involved whenever autism is discussed. This self-advocacy is demonstrated in making policy changes, educational material, and providing artistic input, as described above. ASAN also makes a clear statement on Genetic Research and its potential harms—such as eugenics. They are more concerned about protections against discrimination of people — not genetic material. ASAN states that autism “is a developmental disability” (ASAN, 2023) and impacts the way neurodivergent people move, communicate, and experience the world. To try and make autistic people “less disabled” is society not accommodating people with disabilities. Their primary motivation is to make sure people with disabilities can access what they need and promote autonomy and self-determination in autistic children and adults. The horrifying research statistic in France found that 9 of 10 women who have been prescreened for autism have experienced sexual violence was a shocking and sobering reminder of how disenfranchised the experience of neurodivergent folks is. Police stops and resulting violence are troublingly problematic, particularly in Autistic people of color. ASAN has a whole section of their website devoted to education on Violence and Police that the proposal of “autistic identification cards” is not helpful and that education of police and public servants —as well as accountability— is the preferred route. When comparing ASAN to the Australian Autistic Led Organization Reframing Autism, there was a clear self-advocacy component that felt more evolved than many of the American organizations “fighting” autism— even the term “fighting” leans American. ASAN acknowledges stimming, sensory processing differences, moving differently, communicating differently, and socializing differently. Reframing Autism, another Austrian organization, offers helpful self-identification criteria that may lead to diagnostic support and the relief of the lifelong struggle to be identified. Neurodiversity and the expression of autism is vast in its manifestations. Reframing Autism states that it is not a disease, that autistic people are not ill because of their autism, and that it cannot be diagnosed with a blood test or cured with medicine (Reframing Autism, 2023). Sonny Jane Wise, i.e. @livedexperienceducator is one of a myriad of neurodiversity educators and activists based in Australia. Sonny’s bright and open online persona makes them an accessible resource to Gen Z. They’ve written a DBT workbook for Neurodivergence, a helpful resource and tool for therapists and mental health care providers, and anyone interested in understanding the umbrella of neurodiversity and its expressions. With the internet (TikTok, specifically), there has been a surge in self-identifying and seeking care, support, and diagnostics. A simple YouTube search will yield thousands of videos offering shared personal experiences of neurodivergent-identifying individuals. There are the breakthrough relief accounts of a generation of adult AFAB with late diagnoses of ADHD who have been suffering beneath their masking (only exacerbated by gender norms) and those explaining the dual diagnosis of Autism and ADHD and helping others feel seen and not alone. As amazing as this shared experience movement is, there is much criticism surrounding neurodiversity as “trending.” This parallel in the LGBTQIA+ hetero perception that trans identity and pronouns are “just a trend”. Would anyone freely elect to be a marginalized person? or a neurodivergent person for that matter? Critics will say it's an excuse for laziness, or substance-seeking behavior due to the use of stimulants to aid symptoms in ADHD brains. Disability is a natural part of life. There is a vast spectrum that neurodivergent people exist within and that nothing about us needs to be “fixed.” Neurodiversity activism and social media are changing the dialogue around disability or neurocognitive differences. Gen Z and its enthusiastic consent model, anti-capitalist motifs and mental health awareness is changing the narrative for all of us. Those of us who went undiagnosed suffered under the script of conformity and were prescribed a way of being that was considered normal when we were anything but. References: Reframing Autism | Celebrating & nurturing Autistic identity. (2023, June 12). Reframing Autism. https://reframingautism.org/ Research - Autistic Self Advocacy Network. (n.d.). Autistic Self Advocacy Network. https://autisticadvocacy.org/research/ Solomon, Andrew. Autism Rights Movement. The New Yorker. May 2008. https://nymag.com/news/features/47225/ Wikipedia contributors. (2006). Autism speaks. Wikipedia. https://en.wikipedia.org/wiki/Autism_Speaks Wikipedia contributors. (2023a). Controversies in autism. Wikipedia. https://en.wikipedia.org/wiki/Controversies_in_autism
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11/9/2024 08:49:27 am
Thank you for providing access to this informative health blog.
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11/9/2024 08:50:42 am
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