The blog-a-book project continues!

Mothers who blog about autism do so in a social and political context in which the meanings, experiences, and voices of autism are contested. Although it is an oversimplification, I summarize here two distinct discourses of autism that are prevalent in traditional media coverage and in online spaces: autism as deficit and autism as difference. By “discourse” I mean a system of assumptions, meanings, metaphors, narratives, and voices that show up across a variety of “texts” (e.g., in television, film, news coverage, everyday conversation, images).  Discourses are evident both in the explicit content of particular texts and also in the between-the-lines inferences we draw because of our familiarity with the discourse. Because my interest in this topic is part of a larger project that examines blogs by mothers, I will also comment on the significance of online spaces for representing autism as difference and give a few examples of ways that parents have participated in online autism discourses.

Autism as Deficit

The dominant discourse in authoritative sources such as the New York Times and in nonprofits such as Autism Speaks is concerned with autism as a tragic deficit we should treat and prevent (Billawalla & Wolbring, 2014; Hughes, 2015; Huws & Jones, 2011). Autism is seen as a medical condition characterized by deficits, abnormalities, and developmental delays.  Debates transpire over scientific evidence of cause (e.g., whether vaccines cause autism) and the efficacy of treatments.

For example, the National Institute for Mental Health (2016) defines autism as a developmental  disorder and characterizes it as a spectrum because autistics have a wide “range of symptoms, skills, and levels of disability.” NIMH lists “signs and symptoms” falling in the categories of “restrictive/repetitive behaviors” and “social communication/interaction behaviors.”  The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria include “persistent deficits in social communication and social interaction,” and “restricted, repetitive patterns of behavior, interests, or activities” that are present from childhood and cause impairment in functioning (Centers for Disease Control and Prevention, 2016).  The specific language of the diagnostic criteria is informative.  For example, the DSM-5 gives these illustrations of communication and social interaction behaviors (I have added the red lettering to draw attention to particular words):

1. Deficits in social-emotional reciprocity, ranging, for example from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or making friends; to absence of interest in peers (CDC, 2016).

The language presents autism as deficit, failure, abnormal, poor, lacking, difficult, and absent—all words with negative connotations.

Image of a blue puzzle pieceThese definitions are taken up in particular ways in the broader public discussion of autism as tragedy, mystery, and threat (Broderick & Ne’eman, 2008). Reports on medical research treat autism as a mysterious condition whose causes must be solved or a threat that must be prevented or fixed (Rocque, 2010). News coverage emphasizes medical themes such as symptoms, statistics, and treatments (Billawalla & Wolbring, 2014) and is more often negative than positive (Jones & Harwood, 2009), portraying autistics as both vulnerable and dangerous, and as sources of suffering to their parents (Huws & Jones, 2011). Mainstream media turn for expertise to medical authorities, government, family, and nonprofits and seldom quote autistics themselves (Billawalla & Wolbring, 2014; McKeever, 2013). News about parents who kill or attempt to kill their autistic children centers on the parents, whose actions are represented as understandable, given the difficulties associated with autism (Hughes, 2015). Non-profits such as Autism Speaks represent autism as an “epidemic” that “plague[s]” children, an “urgent global health crisis,” more common than life-threatening illnesses such as AIDS, cancer, or diabetes (Hughes, 2015). Kidnapping, military, barrier, and death metaphors abound (Gross, 2012). The negative representation of autism in public discourse aligns with funding priorities, in which more resources go to research on cause and cure than to supports and accommodations for adults (Durbin-Westby, 2010; Singh, Hallmayer, & Illes, 2007).

Autism as Difference

Infinity symbol in rainbow colorsA competing discourse redefines autism as a form of neurodiversity that entails strengths as well as impairments that need acceptance and accommodation rather than cure (e.g., Broderick & Ne’eman, 2008; Bascom, 2012). Neurological differences (including but not limited to autism) are seen as “natural, healthy, and valuable forms of human diversity” which should be considered as similar “to other forms of human diversity (e.g., diversity of race, culture, gender, or sexual orientation)” (Walker, 2012, p. 156).

For example, the Autistic Self Advocacy Network (ASAN) website describes “characteristics typical of autism” in language that suggests difference, rather than deficit (I have added purple lettering to draw attention to some key words and phrases):

  1. Different sensory experiences. For example, heightened sensitivity to light, difficulty interpreting internal physical sensations, hearing loud sounds as soft and soft sounds as loud, or synesthesia.
  2. Non-standard ways of learning and approaching problem-solving. For example, learning “difficult” tasks (e.g., calculus) before “simple” tasks (e.g., addition), difficulty with “executive functions,” or simultaneously gifted at tasks requiring fluid intelligence and intellectually disabled at tasks requiring verbal skills.
  3. Deeply focused thinking and passionate interests in specific subjects. “Narrow but deep,” these “special interests” could be anything from mathematics to ballet, from doorknobs to physics, and from politics to bits of shiny paper.
  4. Atypical, sometimes repetitive, movement.This includes “stereotyped” and “self-stimulatory” behavior such as rocking or flapping, and also the difficulties with motor skills and motor planning associated with apraxia or dyspraxia.
  5. Need for consistency, routine, and order. For example, holidays may be experienced more with anxiety than pleasure, as they mean time off from school and the disruption of the usual order of things. People on the autistic spectrum may take great pleasure in organizing and arranging items.
  6. Difficulties in understanding and expressing language as used in typical communication, both verbal and non-verbal.This may manifest similarly to semantic-pragmatic language disorder. It’s often because a young child does not seem to be developing language that a parent first seeks to have a child evaluated. As adults, people with an autism spectrum diagnosis often continue to struggle to use language to explain their emotions and internal state, and to articulate concepts (which is not to say they do not experience and understand these).
  7. Difficulties in understanding and expressing typical social interaction. For example, preferring parallel interaction, having delayed responses to social stimulus, or behaving in an “inappropriate” manner to the norms of a given social context (for example, not saying “hi” immediately after another person says “hi”) (ASAN, n.d.).

It is apparent that some similar phenomena are being described by the earlier NIMH and DSM-5 language and the items on this list; however, the wording produces a different impression.  “Different,” “non-standard” and “atypical” have less negative connotations, and the list shows the possibility that difficulties, disabilities, and anxieties may be paired with “gifts,” “heightened” abilities, and “pleasure.” The DSM-5 language of “insistence on sameness, inflexible adherence to routines” is characterized more neutrally in ASAN’s list as “need for consistency, routine, and order.” Likewise “highly restricted, fixated interests” becomes “deeply focused” and “passionate interests” that can include shiny things and doorknobs as well as mathematics, physics, ballet, and politics. Quotations marks are used to draw attention to assumptions that are embedded in calling some tasks “difficult” versus “simple,” some interests “special,” or some behaviors “stereotyped” or “inappropriate.”

Acknowledging neurodiversity does not deny autism is a disability, but emphasizes “that disability is as much a social as a medical phenomenon” (Ne’eman, 2012). Following the disability rights movement, advocates seek to locate disability, not in autism, but in a society that does not accommodate autistics. Many advocates prefer “autistic” to “person with autism” because they see autism as an integral part of a person, akin to race or gender (Brown, 2011). Autism advocates seek public voice and funding and policies that prioritize support and accommodation across the lifespan (Orsini & Smith, 2010). Many see preventing autism as eugenics and seek to shift attention from searching for a cure to providing the supports necessary for full participation in society.

Neurodiversity Online

Online interaction plays a central role in the neurodiversity movement, enabling individuals who are geographically separated to find common cause and identity (Bagatell, 2007) and to coordinate offline meetings (Davidson, 2008; Sinclair, 2012). Engaging in advocacy on the internet also challenges stereotypes by demonstrating autistics speaking for themselves and forming relationships (Davidson, 2008) and enables autistics to claim expertise and identity (Brownlow, Odell, & Taylor, 2006). For example, the Autism Network International Listserv began in 1994 as an autistic space with separate forums for autistics and parents (Sinclair, 2012). The Autism Women’s Network hosts a blog, blog talk radio, and Facebook page and Wrong Planet hosts forums and blogs. Some autistics find online text-based media especially hospitable because they free interaction from eye contact, the constraints of synchronous processing, and the demands of managing and interpreting body language (Davidson, 2008).

Online spaces are also sites for dissemination of competing expertise and contested representations of autism. In fact, some autistic advocates frame their advocacy in terms of struggles for expertise and representation through counter-narratives (e.g., Broderick & Ne’eman, 2008). In her study of the online neurodiversity movement, Hughes (2015) identified two main discursive strategies: language awareness (e.g., changing the conversation, ending misrepresentation, reframing, rethinking autism) and perspective-taking through first person accounts that show autistic people in a different, more diverse light. “Sharing stories, voicing opinions, and representing the voices of other members of the autistic community are ways of reclaiming the right to self advocate” (Hughes, 2015, p. 127).

Examples of online advocacy abound. For example, organizers of This is Autism Flashblog identified a single day for bloggers to write about what autism meant to them and link their post to a central site that was then promoted across social media. The hashtag #ActuallyAutistic is used on various social media platforms to signal that the post is by an autistic, rather than others seeking to speak for or about them. In the wake of mother Kelli Stapleton’s attempted murder of her autistic daughter, Issy, hashtags such as #IamNotKelliStapleton and #WalkInIssysShoes marked writing that criticized news coverage and provided alternative interpretations; the online campaign was eventually picked up in mainstream media. Advocates have also taken over comment threads or hashtags that originated with dominant organizations such as Autism Speaks (e.g., #AutismSpeaks10), using their tags to proliferate neurodiversity messages instead. Some online activism spills over offline, such as Disability Day of Mourning, a yearly day of remembrance of disabled people killed by parents or caregivers that includes vigils online and in various US cities. When a prominent New York clinic launched an ad campaign with a fear-based ransom note theme, a combination of online and offline protest resulted in revoking the ads (Kras, 2010).

Parents Navigating Online Autism Discourse

Parents of autistic children participate actively in online communication about autism, though their alliances are varied (Orsini & Smith, 2010). Parents are central participants in the online presence for Autism Speaks, the largest and best-funded autism organization. Other parents align with autism acceptance through sites such as the collaboratively authored blog, Thinking Person’s Guide to Autism, or the Facebook page, Parenting Autistic Children with Love & Acceptance. High profile parents have used social media to express their views. For example, Stapleton blogged about her difficulties prior to the attempted murder and the blog has been continued by friends since her incarceration.

By going online with their stories, parents who blog must navigate the competing discourses of tragic deficit versus neurodiversity, and the identities and communities that align with these discourses. Online conflicts have erupted among parents with differing beliefs about cause (e.g., MMR vaccines) or the efficacy of various treatments. Debates also occur between parents and autistic advocates, who have criticized parents for supporting organizations that view autism as tragedy, for posting negative accounts that violate their children’s privacy and contribute to negative stereotypes, and for speaking on behalf of autistics rather than working to put autistic voices center stage (Chamak, 2008; Hughes, 2015). These debates have been heated (Hughes, 2015) and have public policy implications for issues such as vaccination (Diresta & Lotan, 2015) and autism funding priorities (Broderick & Ne’eman, 2008).

Next up? I am working on essays about parents’ position with respect to autism, consciousness-raising and counternarrative, lots of stuff.  Please stay tuned.


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