Autistic Self Advocacy Network (ASAN) defines autism as “a neurological variation that occurs in about one percent of the population.” This percentage equates to about one in every 59 children in the United States.
Though autism is diagnosed on a spectrum, individuals with the variation experience a few common characteristics: different sensory experiences, non-standard ways of learning and approaching problem-solving, deeply focused thinking and passionate interests in specific subjects, atypical – sometimes repetitive – movement, the need for consistency, routine and order, difficulties in understanding and expressing language as used in conventional communication (both verbal and non-verbal) and difficulties in understanding and expressing conventional social interaction.
In short, autism makes people different in certain ways, but this difference is something to be embraced and appreciated, not eradicated or fought against.
Individuals with autism, precisely because of their diagnoses, have something unique to add to this world. It is important that we work to reframe our discussion of neurodiversity to reflect the complex ways prior understanding has influenced our judgment of those who are neurologically atypical.
Over the years, the well-known autism advocacy organization Autism Speaks has garnered much backlash. The nonprofit’s iconic blue puzzle piece has become synonymous with the general campaign of autism awareness, and yet, some of its practices have proved concerning.
In 2017, the organization spent only 1.6% of its budget on Family Service grants aimed at funding services for affected families, instead using 32% of its funds to do research that includes looking for genetic biomarkers of the disorder.
Similarly, many make the argument that the group does not consult or give leadership roles to enough individuals with autism. Of its 26-person board of directors, only two members have autism; the 24 others represent major corporations like current and former CEOs and senior executives of PayPal, Samsung, CBS, Goldman Sachs, White Castle, Viacom, American Express, FX Networks, Virgin Mobile, SiriusXM and Sprint.
Perhaps as a direct result of this primarily neurotypical leadership, the organization has continually presented autism as a problem needing to be solved rather than a natural variation in the human genome.
The organization’s video released in 2009 and titled “I am Autism” presents the disorder as a guaranteer of divorce, an emotional wall between parent and child and a producer of endless barriers to happiness. Ultimately, the video makes the argument that autism is an antagonistic and menacing force that can ruin lives.
Not only does such framing position individuals with autism as innately bad or burdensome, but it also makes the argument that autism inherently cannot be a facet of a fulfilling, happy life. These arguments are simply untrue.
The misunderstanding of neuro-difference within the linguistic frameworks that Autism Speaks and others have promoted both spreads judgment about those who are not neurotypical and undercuts the real impact these individuals can have on our society.
Though a component of autism involves an affected ability to interpret social cues, many individuals on the spectrum have the ability to learn common but non-innate methods of communication.
Greta Thunberg, notable climate activist and 16-year-old with Aspergers (a relatively mild form of the variation which falls under the broader term of Autism Spectrum Disorder) is a profoundly impactful young person in our society today. Though she may experience moments of particular social awkwardness as a result of her disorder, she is thoughtful, well-spoken and incredibly influential.
Nonetheless, conservative commentator Michael J. Knowles recently called Greta “mentally ill” in an attempt to argue that the plight for climate change awareness is unfounded and led by those both easily susceptible to manipulation and lacking in critical thought.
Perhaps Greta has proved so powerful precisely because she ignores any imposed social expectation that she, and other young people, should “calm down” about our changing climate. She refuses to be convinced her concern about the environment is anything other than legitimate because her primary instinct is to listen to the scientific fact, not social cues that might otherwise police this worry as “hysteria.”
That the Fox News commentator would discredit her activism by reducing her mind to one that is somehow lesser for being different exposes the severe misunderstanding of neurodiversity that permeates our society.
Individuals with autism can engage in what is defined as camouflaging as a “natural adaptation strategy to navigate reality,” according to Kajsa Igelström, assistant professor of neuroscience at Linköping University in Sweden. Camouflaging is a behavioral pattern in which those with autism mimic the behavior of those not on the spectrum.
Doing so can help these individuals maintain jobs and relationships, but it can also take an emotional toll. Camouflaging requires constant and elaborate effort and can induce anxiety whenever one needs to be “on.”
Assistant Professor of child and adolescent psychiatry at the University of Toronto Meng-Chuan Lai and his team of researchers released a study in 2016 which found that women with autism camouflage more than men. Women are also diagnosed four times less than men, perhaps because they tend to mask their behavioral patterns that much more heavily.
In a society that positions neuro-difference in such an abject light – the way Knowles, perhaps subconsciously, viewed Greta’s Aspergers as a detriment to her rational thought – camouflaging can prove a tactic of a “desperate and sometimes subconscious survival battle,” says Igelström.
We must work to shift our perceptions of autism and other manifestations of neurodiversity from being problems to being opportunities for society to embrace the very differences that continually push it to be better.
The Ram is working to better represent these voices in our own community through increased news coverage and space in our opinion section. We welcome all feedback on our previous content, as well as op-ed submissions for future publication, and aim to serve as a platform for anyone hoping to recount their experience or uplift their voice.
Fordham has its own Autism Speaks chapter at Rose Hill: Autism Speaks U–Fordham University (ASUFU). Some members of the club and those impacted by its work have noted their engagement to be a beneficial experience, while others have chosen different ways to work within the autism community to avoid interacting with the organization.
It is a complicated matter to question the morality of supporting a meaningful local branch of a flawed national organization. Regardless, we must all revise the discourse surrounding neurodiversity and work to combat harmful misunderstandings of what it means to be neurologically atypical.