In a global population of approximately 7.5 billion, just over one billion – or nearly 15 percent – have some type of physical or mental disability, making the disabled "the largest minority group in the world" (UN Department of Public Information, 2016). This disabled population is vast and heterogeneous, with a wide variety of healthcare needs. Patients with disabilities often require sensitive and nuanced mental health treatment and suicide prevention, since chronic physical and mental health issues can interplay with psychiatric needs. Disabled patients are also widely lacking accommodating primary care providers and basic preventative services, which leads to increased rates of infection and preventable disease. Not to mention the complex medical and psychiatric needs that are directly related to disability, which can require specialized, often expensive, care.
Because the disabled community is so diverse, it is simply not possible to capture the breadth and depth of this population’s healthcare needs in a single study. Instead, I have focused on the healthcare experiences of autistic patients—particularly autistic adults. The National Institutes of Health (NIH, 2016) defines autism, or Autism Spectrum Disorder (ASD) as "a group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction. The symptoms are present from early childhood and affect daily functioning." Autism is then, by definition, a multifarious disability that manifests differently in each patient.
There are many barriers to high-quality, accessible care for autistic patients, including diagnostic overshadowing, the tendency for healthcare providers to fixate on one issue while overlooking other symptoms. This is a consequence of stigma and ignorance that neurodiverse patients- those with disabilities like autism, ADHD, and mental illness- face in the doctors' office (Garey, 2013 p.1)(Mehta, et al., 2015). There is limited autism-specific research on the treatment, or mistreatment, of patients, but more than 14 studies exploring the treatment of individuals with serious mental illness found that neurodiverse patients received significantly worse care than the general population. In fact, the healthcare provided to those with psychological, social, and intellectual disabilities (including autism) is so poor that the World Health Organization (WHO) declared it a "hidden human rights emergency" in 2012. These healthcare obstacles exemplify the need for more research on accessible and accommodating care.
This need is even greater because there is a flood of conflicting, and often false, information in society about autism, which infiltrates (or even originates in) medical and research communities. In fact, there are only a handful of published healthcare-related studies on autism that are not focused on children or "low functioning" autistics. The lack of data on autistic adults and "high functioning" autistics leaves providers susceptible to misconceptions and stigmatized beliefs.
The purpose of this research was to explore evidence of inaccessibility when autistic patients had the opportunity to reflect on their healthcare experiences. Particularly, I wanted to learn how or if inaccessibility manifested in more abstract forms, like stigma and misinformation. Additionally, I wondered if accessibility is related to the health disparities that are prominent in the autistic population. Finally, I wanted to uncover what can be done to create more accommodating healthcare interactions.
This research reinforced the findings of similar studies and outlined many of the same concerns. Respondents revealed anxiety about medical appointments, and a tendency to avoid seeking care. There were accounts of dismissal and neglect, and the interviews revealed a significant theme of dehumanization. It is evident that the mistreatment of autistic patients has a real-world impact on health outcomes.
A neurodiversity perspective framed my research. Autistic self-advocates developed the concept of neurodiversity, which defines autism (and other neurological, cognitive, and psychiatric disabilities) as differencesin neurology—not as deficits. This framework does not see autism as a tragedy. Instead, it views ASD as a disability to be accommodated and understood—not cured and eradicated (Schaber, 2014) (Nicolaidis, 2012). The more optimistic perspective of the neurodiversity lens is apparent on every level- beginning with the definition of autism. Contrary to the doom-and-gloom description from the NIH, the Autistic Self Advocacy Network (ASAN, 2016) depicts ASD in a more positive light, describing it as a normal "neurological variation". Some of the autistic traits listed on ASAN's site include: "different sensory experiences..., non-standard ways of learning..., deeply focused thinking and passionate interest in specific subjects". The language chosen by ASAN is positive or neutral, and flips the script on the typically-catastrophic description of autistic characteristics.
Interpretations of the "spectrum" in ASD often depict a range of severity, dividing autistics into "high" or "low" functioning categories. However, these divisions are arbitrary, and requirements for classification vary. One common technique for assigning functioning labels is based on the existence of a co-occurring intellectual disability or low IQ score(Hirvikoski, et al., 2016), but more frequently, the criteria is vague. Neurodiversity-minded autistic self-advocates have explained that it is more accurate to interpret the spectrum of autism as a collection of common characteristics and symptoms, strengths and challenges, which recombine and express uniquely in each autistic individual-- creating a range of difference under the umbrella of one disability (AWN, 2011).
Along with disregarding functioning labels and deficit-based definitions of autism, autistic self-advocates also dismiss the use of "person-first" language. Instead, the neurodiversity movement has widely embraced the use of identity-first language. Rather than the "person with autism" phrasing often used by mainstream media and charity organizations, autistic self-advocates and neurodiversity-minded organizations largely prefer the phrasing "autistic person" (Brown, 2011).Therefore that is the terminology I have used in this study.
From recruitment to final analysis, the concept known as intersectionality guided my project. Kimberle Crenshaw coined the term in 1989 to conceptualize the unique struggles of multiply-marginalized individuals-- particularly women of color (Crenshaw, 1992). Intersectionality highlights how overlapping and intersecting identities relate to systemic inequalities and social structures.
In this research, it is evident that the intersection of gender, race, and/or sexuality with disability compounds the challenges of inaccessible healthcare. The medical system was designed for white, male, able, cisgender, neurotypical bodies. Anyone outside of those norms faces a range of barriers to equal physical and mental healthcare. Physicians often lack training in race or gender-specific health needs, and this leads to the perpetuation of misinformation and stigma, which directly impacts care. In one recent study, researchers discovered that a "substantial number" of white medical students and residents hold "false beliefs about biological differences between black and white people" (Hoffmann, Trawalter, Axt & Oliver, 2016). These false beliefs are certainly a factor in the (often disparate) treatment of pain in black and white patients. Hoffman and Tarzian (2001) showed that women also receive unequal treatment for pain, when compared to men, with clinicians often opting to prescribe sedatives for women instead of painkillers.Additionally, there are disparities in mental health care impacted by race, gender, and sexuality. For example, Hispanic Americans, Asian Americans, and African Americans are all significantly less likely to receive mental health treatment compared to white Americans (Yee, 2011).
These type of medical myths and inconsistencies in care have serious repercussions in the inadequate treatment of women and people of color—and those repercussions are multiplied with each layer of identity. So a black autistic woman faces obstacles when accessing care that a white autistic man would never have to contend with, including a higher likelihood of being dismissed by healthcare providers. There are significant healthcare inaccessibility issues for all autistics, but it is important to be mindful of additional challenges rooted in racism, misogyny, and other (often unconscious) biases. (Yee, 2011).
As a multiply-marginalized autistic activist, I have approached this research and analysis through a social justice-oriented lens. Rather than simply finding and analyzing trends, I have attempted to highlight problems, outline suggested solutions, and raise intersectional questions for further research.
The dramatic health disparities between autistic people and the non-disabled population – featuring disproportionate rates of suicide among the former group - highlight the need for more healthcare research. In particular, we need to better understand access. In numerous studies, healthcare providers and autistic patients have identified common accessibility barriers, including alternate communication needs and unwelcoming physical environments.
Ward, Nichols, and Freedman (2010) defined health disparities as "population-specific differences in the presence of disease, health outcome, or access to care" (pg 281). Overall, people with intellectual and developmental disabilities experience higher rates of diabetes, gastrointestinal disorders, asthma, arthritis, osteoporosis, and cardiovascular disease (Autistic Self Advocacy Network [ASAN], 2014, p. 1-2). Studies of autistic adults have revealed that they are much more likely to have their physical and mental health needs overlooked (Nicolaidis et al., 2013), with much lower rates of preventative care (Lewis, Lewis, Leak, King & Lindemann, 2002, p.179)(Nicolaidis et al., 2013).
Autistic adults also experience disproportionate rates of mental illness (Robertson, 2010, p. 12).Research on autism and suicide has found staggering results, with a 2014 UK study reporting that two-thirds of autistics experienced suicidal ideation (Cassidy, Bradley, Robinson, Allison & Baron-Cohen, 2014, p.142-147),and a 2013 U.S. survey revealed that autistic children are 28-times more likely to contemplate or attempt suicide than their non-autistic peers (Mayes, Gorman, Hillwig-Garcia & Syed, 2013). Most recently, a large study in Sweden examined health and mortality in patients with ASD, and the findings demonstrated significant disparities across the board. Researchers discovered premature mortality rates 2-10 times higher, and a mean age of death 16 years younger, in autistics compared to the general population (Hirvikoski, 2016 p. 232-235). The study divided autistic Swedes into "high" and "low" functioning categories, and there were no significant intragroup differences in mortality—except for a highly elevated rate of death by epilepsy in the "low functioning" group, and a dramatically elevated and "largely avoidable" rate of suicide among the "high functioning" group (Hirvikoski, 2016 p. 235).
On the other hand, physicians prescribe many adults with developmental disabilities disproportionate doses of psychotropic medication- even when lacking a documented psychiatric diagnosis (Lewis et al., 2002, p.177). These disparities in overall health are not always rooted in the biology of autism, rather, they are more often created and perpetuated by social barriers (ASAN, 2014, p.2). Increasing physicians' knowledge of autism and the unique needs of autistic people would go a long way toward reducing barriers and increasing the quality of healthcare (Nicolaidis et al., 2015) (Robertson, 2010, p.12) (Lum, Garnett, O’Connor, 2014, p. 1719).
Previous studies on autism and healthcare access have focused primarily on concrete accessibility barriers. Warfield (2015) looked at accessibility on multiple levels: from the healthcare system at-large to individual providers. In their findings, physicians identified many barriers to care, including: a shortage of providers and financial disincentives to caring for autistic patients, potentially sensory-overloading waiting rooms, and differences in communication methods, including atypical expression of pain and other symptoms (Warfield, Crossman, Delahaye, Der Weerd & Kuhlthau, 2015, p. 2212-2215). Much of this research culminated in a range of recommendations from providers, including: utilization of alternative methods of communication—such as written conversations or sign language, simplified explanations, and visual “social stories” (Aylott, 2010) (Mills, 2012, p.16); increased financial incentives for providers (Lewis et al., 2002, p. 183); better awareness and accommodation of sensory processing differences (Aylott, 2010); and improved training on autism and accessibility (Zerbo, Massolo, Qian &Croen, 2015) (Bruder, Kerins, Mazzarella, Sims & Stein, 2012, p. 2502).
When researchers ask autistic adults about healthcare and accessibility, their answers offer an expanded view of the issues raised by clinicians. For example, physician respondents in the Warfield (2015) study brought up waiting rooms as a potential site of sensory overload (Warfield et al., 2015, p. 2213), and many autistic patients also mentioned waiting rooms repeatedly (ASAN, 2014) (Nicolaidis et al., 2012) (Nicolaidis et al., 2015, p. 4). However, in the patient’s description of problematic waiting areas, they expand on accessibility needs beyond the option of an alternate room, and mention specific concerns like: harsh lighting, distracting background noise, and extended wait times, which exasperate sensory hyper or hyposensitivity (Nicolaidis et al., 2015, p.4).
Regarding communication challenges and accommodations, autistic adults also provide insights that enhance the observations and recommendations of providers. S.E. Smith is an autistic writer, and their analysis of the “hierarchy of communication styles” is very applicable to patient-provider interactions in healthcare settings (Smith, 2014). They identify “lesser” forms of communication- many of which are utilized by autistic individuals- including text-to-speech technology and sign language; non-disabled people often treat these alternative methods of communication as an inconvenience (Smith, 2012, p. 1). Even less-understood and accommodated are those individuals who are perceived as unable to communicate—the “non-verbal”, “non-speaking”, “low-functioning”, autistics. Smith’s thesis centers on the question of whether it is “really an issue of ‘can’t communicate’, or ‘won’t communicate in a way that satisfies you?’” (Smith, 2014, p.1), and they emphasize the need to accommodate every individual, with any perceived level of “functioning”, in the same way a speaking, non-disabled, person would be accommodated (Smith, 2014, p.2). In a healthcare setting, this means providers must find a way to connect with each and every patient. A study of physicians in Massachusetts asked for perceptions of the “difficulty” of patients with various disabilities, and patients with communication impairments were rated as the most challenging, and were least likely to be served by providers (Bachman, Vedrani, Drainoni, Tobias & Maisels, 2006, p. 133); which illustrates room for improvement in understanding and accommodating autistic patients, especially those who utilize non-verbal communication.
There are several lists of suggestions for patients, caregivers, and providers that combine research and analysis on the varied healthcare access needs of autistics. The discovery of these concrete accessibility barriers led the researchers at Academic-Autism Spectrum Partnership in Research and Education (AASPIRE) to create an online toolkit, which contains practical suggestions, checklists, worksheets, and a wide range of informational resources (autismandhealth.org). It is a thorough and incredibly valuable resource for patients and providers.
However, some common – yet critically important - concerns around accessibility are difficult to address in concrete ways. These barriers are more abstract, and revolve around misinformation, stigma, and rigidity.
Clinicians overwhelmingly report a lack of formal training on autism (Zerbo et al., 2015) (Bruder, 2012). Even when they reported “actively” providing care to autistic patients, providers expressed concern about a shortage of autism-specific education during medical school or residency (Warfield et al., 2015, p. 2213-2214). The need for in-depth, strengths-based, training on autism is most eloquently highlighted by physicians who are also parents of autistic patients. In an op-ed from one of the AASPIRE researchers, Nicolaidis recalls her experience as a mother and primary care physician. She recounts when her son first received his autism diagnosis, and the vast amount of misleading and stigmatized information she encountered (Nicolaidis, 2012). She suggests that physicians can learn from autistic patients aboutautistic patients, and encourages a shift away from a deficit model toward a neurodiversity framework that “sees autistic individuals possessing a complex combination of cognitive strengths and challenges” (Nicolaidis, 2012, p. 503). Another physician published a series of intimate anecdotes recounting a few his son’s unfortunate healthcare experiences (Mills, 2012). He does not use the same neurodiversity terminology as Nicolaidis (2012), but it is clear that their articles both emphasize the ways that embracing neurological differences can improve patient-provider interactions (Nicolaidis, 2012) (Mills, 2012).
Experiences reported by autistic adults reflect the lack of training and abundance of misinformation present in results of provider studies. One large-scale study in the UK reported that 74% of participants believe autistic patients receive "worse" or "much worse" care than non-autistic peers, and 65% think that providers "rarely" or "never" understand autism (Christou, 2016). Interview and survey research from Australia and the U.S. returned similar concerns. When asked about their healthcare accessibility needs, autistic patients described experiencing misconceptions regarding the presentation of autism in adults (Lum, 2014); a tendency for providers to attribute unrelated symptoms to autism rather than investigate their true cause (ASAN, 2014) (Nicolaidis et al., 2015); and a hesitance to seek accommodations due to fear of stigma (Lum, 2014). Autistic patients also reported poor experiences with physicians, citing disrespect, dehumanization (ASAN 2014) (Nicolaidis et al., 2015), and discrimination (Lum, 2014), as the main causes of the negative interactions.
The connections woven between the responses of healthcare providers and autistic patients in existing research glaringly illustrate how inadequate formal education on the lived reality of autism can lead to misinformation among providers. These misconceptions can vary from benign—an autistic patient’s obesity is the result of a lack of social skills—(Zerbo, 2015, p.8); to harmful— autistic patients have a higher pain threshold since they do not show discomfort like most patients —(Zerbo, 2015, p.7); to dangerous— autistic patients do not have sex or drink alcohol, and therefore need no relevant information or warnings—(Zerbo, 2015, p.8).
Inaccurate information can also lead to stereotypical or biased ideas about autistic individuals. Lack of understanding can lead to dehumanization, and dehumanization can lead to less-adequate care (Nicolaidis, 2015) (ASAN, 2014). Autistic individuals- even "low functioning"- are not ignorant to their own mistreatment. The fear of misinformed providers and stigmatized healthcare can cause patients to avoid seeking treatment (Lum, 2014), which explains at least some of the health disparities in the population (Nicolaidis, 2015). The root of health inequality and early mortality is often social, rather than biological, (Hirvikoski, et al., 2016) (ASAN, 2014, p.2), suggesting that more solutions for improving autistic health outcomes may exist in societal changes than in the biology of autism.
This research project consisted of a short demographic survey, and a four-question interview discussing participants' healthcare experiences.
I recruited a convenience sample by reaching out to a variety of organizations within the United States that target autistic adults via email, Facebook, and Tumblr. Half a dozen groups distributed the call for participants to their followers or listservs. Forty-four people completed the pre-interview survey, which collected demographic data and asked about accessibility needs for the interview. Fourteen of the survey respondents returned the consent form and participated in the final interview process. I used pseudonyms in this report for all interviewees.
In order to be eligible, participants needed to be US residents between 18 and 64 years of age, and identify as autistic. To account for the fact that a large percentage of autistic adults are lacking a formal diagnosis (Brugha, et al., 2011), I did not ask for any evidence of diagnosis outside of their Autism Quotient score (Baron-Cohen, Wheelwright, Skinner, Martin & Clubley, 2001), which has been used by other researchers who include self-diagnosed participants. The intention was to collect the most intersectional sample possible, and so Tumblr was used as a recruitment sources because of the diversity of the users of that site (Pew Research Center, 2015).
The demographic survey consisted of open-ended questions, allowing participants to self-identify in the areas of race and ethnicity, gender, sexuality, and disability. The resulting participant base looks quite different from the typical straight, cisgender, able-bodied, male that is so often represented as the face of autism in research and the media. Twelve of the fourteen participants are not straight, and the same number are not male. At least three are not cisgender and another three are not white. At least eleven of the fourteen are disabled in some way besides autism, and those that disclosed their diagnoses revealed a fairly even split between physical and mental disabilities. Participant ages ranged from 18 to 59, with a mean of 29. The pre-interview survey also asked their age of autistic diagnosis (or self-diagnosis), and interestingly, every participant was diagnosed in adolescence or adulthood- rather than in early childhood. Ages of diagnosis ranged from 12 to 57, with a mean of 24. This could be reflective of the gender of the sample, and the tendency for autistic girls and women to go undiagnosed or be diagnosed later in life (Kim, 2013).
Typically, people of color, women, and other minorities are diagnosed later in life. It is not necessarily that rates of autism are lower in these groups, but more likely that they are simply disproportionately underdiagnosed, or "hiding in plain sight", as autistic advocate Cynthia Kim (2013) described the phenomenon. There are several theories about the cause of this trend of underdiagnosis. Since much of the early research on autism was based on young white boys, women and people of color do not fit the "typical" model of an autistic patient in popular culture or medical research. Additionally, minorities may develop scripts and other coping skills in order to "pass" as neurotypical, especially since women and people of color often receive more social instruction on how to behave "properly" than their white male peers. Another possible cause of misdiagnosis or underdiagnosis is the existence comorbidities, like the high frequency of mental illness in autistic patients, which can overshadow an ASD diagnosis (Kim, 2013; Hirvikoski, et al., 2016).
The interviews in this study consisted of four prompts rather than a long list of questions. My goal was to let the participant share their stories. Prompts included requests for accounts of: 1) A good, pleasant, or positive healthcare interaction; 2) A bad, unpleasant, or negative healthcare interaction; 3) A description of an “average” interaction—whether it is positive, negative, or somewhere in between; and 4) A description of an ideal healthcare interaction. I asked follow up questions as needed. The aim was for experiences of systemic inaccessibility to arise organically in the storytelling process—rather than asking specifically for these issues. The resulting interviews demonstrate how macro-level concepts of ableism and stigma are present in micro-level patient-provider interactions.
Because this was a study focused on autistic adults, it was essential for it to be as accessible as possible for the participants. The questions were designed to be specific enough to avoid confusion, yet open-ended enough to allow flexibility. The pre-interview survey asked for preferred method of contact, and preferred method of interview. Most participants chose email for the initial contact and consent form distribution, with a few preferring text messaging.
For the interviews, I offered a range of platforms, including: email, instant messaging (via Facebook, WhatsApp, or other applications), text messaging, phone, and video (via Skype or Facetime). The final interviews were split over a range of methods: seven chose email, two chose text messaging, three chose the phone, and two participants chose video conferencing. For those conducted verbally, rather than in writing, I sent the list of prompts the day before so participants had time to review the questions and think of experiences to share without on-the-spot pressure. For email and text message interviews I sent all four prompts at once, waited for a reply, and then sent follow up questions as needed. I introduced each interview by explaining that I was looking for personal stories, with as little or as much information as they were willing to share, and ended each by asking if they had questions or wanted to add anything else.
A key of neurodiversity is presuming competence. In other words, a belief that all autistic people (regardless of their perceived “functioning level”) are capable, and can communicate for themselves. Therefore, this research focused on actual autistic adults, and did not involve caregivers or non-autistic loved ones, with the assumption that autistics can communicate their experiences and express their needs with adequate accommodations.
The interviews in this study reinforced existing research on barriers in healthcare access. It is apparent that providers' lack of training and misinformed notions about autism impacts the quality of care they provide for physical and mental illness in autistic patients.
Stigma and Disclosure
Multiple participants expressed concerns about the stigmatized views held by providers regarding their autistic diagnoses. I asked each interviewee whether their doctors are aware that they are autistic, and the majority reported that they prefer not to disclose their diagnosis, or do so only when it is relevant. As Blake, a 25-year-old participant, put it: "I have just gotten tired of ableist doctors so I don't disclose unless absolutely necessary." Several interviewees noted that they have the autistic diagnosis in their chart, but they do not go out of their way to bring it to the attention of the physician. Others reported that they hesitate to disclose any neurodiversity, not just autism.
"Sometimes the doctor doesn't read the little she's autistic' note or they ignore it, and those kind are better." (Kara, age 20)
"I become somewhat wary of telling them I have psychiatric diagnoses right off the bat because then there are a lot of assumptions" (Dylan, age 35)
There was only one participant who said they make a point of disclosing their autism to each healthcare professional. Elliot, the 20-year-old interviewee explained that he tells his physicians because he wants to make sure they have "the most accurate information" about how his "body/brain works before proceeding with any kind of treatment." However, the result is not always understanding and accommodating... He reports delaying or avoiding care because of disclosure-related anxiety, explaining: "I have missed (or just not set up) appointments with therapists and psychiatrists for fear of them not understanding or dismissing my diagnosis, or trying to say that I 'actually have THIS instead'". So before even getting to the physical or psychological reason for an appointment, disabled patients like Elliot must already navigate difficult decisions related to disclosure.
A study from the UK Westminster Committee on Autism found that an overwhelming 95% of participants would like a note in their chart to notify healthcare providers of their autistic diagnoses (Christou, 2016 p.22). This result stands in stark contrast to the responses of the interviewees in this research, and the work of Lum (2014),where participants shared concerns about stigma and stereotypes, and expressed a hesitancy to disclose. The Westminster report argues that alerting physicians to patients' autism diagnoses would encourage them to be more accommodating. Yet, disclosure is only effective if the patient is working with an informed and compassionate physician.
Other Interviewees brought up how misinformation about autism factored into negative healthcare interactions. As Warfield (2015) discovered, there are many inaccurate notions among healthcare providers about what autism is and how it presents. Multiple participants discussed their difficulty getting an autism diagnosis, and several reported electing to forgo the official declaration altogether, citing the challenge of being believed as "high functioning" adults. One person recalled an ignorant physician in their diagnostic process: "I brought up the fact that, hey I think I'm autistic. And he was 'well you can talk so obviously you're not.' He expected me to be a lump that was just sitting there...". Another individual described an incident where a clinician reacted to the autism diagnosis in her chart with disbelief, saying "there's no way you're autistic, you're a girl and you talk so well!" This reaction reflects gender-related autism stereotypes and misinformation.
Like the neurodiverse patients who reported diagnostic overshadowing in prior research, several participants reported physical symptoms that had been overlooked or blamed on anything but the actual issue. Some were told they were being manipulative when seeking mental health care; others had (sometimes serious) physical illnesses blamed on weight, "drug-seeking", anxiety, or other psychiatric issues. When describing their ideal appointment, one individual stated their frustration with this phenomenon: "I would not have my symptoms blamed on my neurotype". It is apparent that stigma and misinformation not only impact the quality of care patients receive, it also influences the way patients approach their healthcare interactions.
Anxiety and Avoidance
A substantial amount of anxiety was present in the reflections of interviewees. Nearly every participant mentioned discomfort or fear in healthcare settings, and this anxiety cut across every demographic. There was also a repeated theme of avoidance. Individuals in this research reported that they stopped seeing providers, changed clinics, cancelled appointments, and delayed seeking care out of fear of mistreatment or because of past "traumatic" experiences. Casey, a 28-year-old participant, described a particularly bad experience where her parents were told she was manipulative and faking her symptoms. She explains, "It destroyed any trust I had left in medical professionals, something that carried over for years". She ended up hiding the psychiatric issues that led her to seek treatment in the first place, which had serious repercussions and "destroyed what was left of [her] high school years". Other participants reported a combination of touch aversion and health care-related anxiety. Avery, a 40-year-old woman, reported that she "couldn't stand for doctors to touch [her]", which led to avoidance that lasted into her "later 20s and early 30s". This reflects the anxiety and hesitancy discussed by autistic respondents in earlier research. (Robertson, 2010; Lum, et. al, 2014)
Interviewees also revealed other responses to negative healthcare interactions, including a tendency to minimize symptoms out of fear of being dismissed. Several people mentioning worries about being labeled a hypochondriac, or being seen as "dramatic". Others reported experiencing shame, frustration, or embarrassment. Marley, 27-years-old, described the emotional aftermath of a particularly bad experience: "I left the appointment angry and frustrated - at the doctor, and at myself for being perceived as such a difficult nuisance. I started to see myself that way too." These negative interactions, and the resultant tendency to fear and avoid medical providers, are undoubtedly linked to the physical and mental health disparities found in the autistic population.
The World Health Organization described the healthcare of neurodiverse people as "inhuman and degrading treatment", explaining that "people are often stripped of their dignity and treated with contempt" (WHO, 2015). It is difficult to know how much the disproportionate rates of illness and suicide in the autistic population would shift if providers treated all patients with respect, humanity, and equal levels of care. However, I speculate that rates of health would improve quite significantly if all clinicians were well-informed and free of subconscious bias. Improved training could potentially bridge the gap between patients and providers by working to combat deeply-rooted stigma and inaccurate beliefs.
The interviewees' reports of negative healthcare interactions varied from casual dismissal, to humiliation, to outright physical assault—but dehumanization was a shared theme among all the reports of bad experiences. Respondents repeatedly lamented a desire to be treated "like a person", sharing tales of infantilizing medical professionals:
"Most doctors are so condescending" (Elliot, age 20)
"When they don’t answer my questions thoroughly, or they brush them off, or don’t tell me what they’re going to do or explain anything…anxiety.... I know a lot about the human body and I know a lot of chemistry, so I want real answers. I don’t want to be patronized—that just pisses me off" (Lake, age 29)
"Usually [the appointment] ends in me not being treated like the 20 year old person I am" (Kelly, age 20)
This kind of dehumanization can have very real consequences. Violence and abuse happen in many contexts, but power imbalances and dehumanizing views are common catalysts—and this manifests in medical and psychiatric settings as well.
Sadly, there were multiple participants who reported experiences of physical assault at the hands of healthcare "professionals". The youngest interviewee recalled a disturbing incident from an inpatient hospitalization:
"I was dragged across the floor tied down drugged and stripped by opposite sex staff members who watched me mostly out of site (head only in view) and grunted for 4 hours despite my agreeing to take an Ativan and follow them because I did not verbally say it but instead nodded and started to follow. In addition, male staff members made rude comments about my breasts" (Niki, age 18)
Another participant experienced a violent misunderstanding with first responders:
"I had a meltdown, and a lot of times when I have a meltdown I am not able to speak. My boyfriend at the time called 911 because I was locked up and everything. So the EMTs come and I am conscious, and I am aware of what is going on and everything. They're telling my boyfriend that I am on drugs, and he has been with me all day so you know he knows I wasn’t, and he told them I was autistic. Basically they took me and slammed my head up against the wall and put smelling salts under my nose and were yelling at me and stuff." (Oakley, age 29)
In both incidents, the victimized women were punished, at least in part, for displaying autistic characteristics (e.g.: meltdowns, nonverbal communication). I could not find any research specifically focused on rates of medical abuse committed against autistic adults. In fact, any combination of terms I used in academic research databases or online search engines overwhelmingly returned results describing how to manage offenses committed byautistics. Often, the "abusive" behaviors described were, to the autistic eye, obvious symptoms of sensory overload or meltdowns. These articles recommended restraints, high doses of psychotropic medications, and problematic behavioral therapy techniques as ways to stop or prevent autistic "behaviors". It is hard to imagine experts condoning the same extreme parenting or therapeutic practices for non-disabled patients. Even when searching specifically for data on autistic victims, available information overwhelmingly portrayed autism as the problem.
Descriptions of the type of provider-inflicted violence that appeared in my interviews may be largely absent from available research, but that does not mean they are a rare phenomenon in reality. Intracommunity conversations are full of accounts of abuse at the hands of the medical industrial complex. There are entire hashtags and blogs dedicated to the subject, including one titled "Medical Abuse Survivors Anonymous", with submissions detailing emotional, physical, and sexual abuse perpetrated by healthcare practitioners. The lack of neurodiversity-minded resources and approaches to autistic "behaviors", contributes to the pathologizing of autism—and the dehumanization and abuse of autistic people.
Dismissal and Distress
Perhaps less dangerous on the surface than physical abuse, dismissing patient concerns has great potential for harm. By overlooking symptoms and perpetuating the cycle of anxiety and avoidance, providers exasperate the health disparities found in the autistic population. The dismissal of patients takes many forms, including diagnostic overshadowing, infantilizing adult patients, and denying legitimate autistic diagnoses. In the interviews, participants shared multiple accounts of physicians holding back important information, ignoring obvious symptoms, and otherwise minimizing their concerns. Several interviewees recalled patronizing doctors and experiences of dismissal:
“Simply put, he was a jerk. He addressed me in a childlike voice, even though I was 19 at the time. He patted me on the head and told me to just keep living life the best I can”. (Marley, age 27)
“I don’t know if he thought I wasn’t intelligent enough to understand my own health or if he thought I was on some other drugs but he didn’t seem to respond to me like I was an adult human being capable of discussing my own healthcare. Which was very upsetting”. (Dylan, age 35)
“When I said that I had been on antidepressants for migraines in the past at a low dose and they made me more depressed and caused suicidal thoughts, he asked if they were really that bad and kept bringing it up even after I asked him not to”. (Blake, age 25)
The physicians in these reflections not only dismissed the physical symptoms and concerns of the patient, they also caused emotional distress in the process.
This type of reaction only piles onto the microagressions already faced by autistics, and perpetuates feelings of distress. It is difficult to know exactlywhy a physician may overlook or disregard certain patients or certain complaints. From an intersectional perspective, this is particularly difficult to discern when the autistic patient is multiply-marginalized. But regardless of the reasoning, the reality of providers' dismissal has concrete consequences. It is no wonder that the health outcomes of autistic adults lag behind their non-disabled peers when they feel set up for failure before even setting up an appointment.
The frustration over being dismissed was palpable in the interviews. Participants were asked to describe their positive and ideal healthcare experiences, and one of the most common themes was simple: respect. These patients just want to be heard:
“I found a psychiatrist who actually listened to me. She didn't discredit anything I was saying or try to minimize my concerns- she actually listened. It was amazing”. (Casey, age 28)
"In the ideal doctor's visit, I would have a person who takes me at my word and knows I'm not just lazy, or just fat, or just trying to get drugs. I would have someone who I felt comfortable discussing my mental health issues with as well without them then ignoring all my physical problems and thinking that my symptoms are imagined." (Francis, age 23)
"(In an ideal appointment) all of my concerns would be taken seriously. That is literally it. I am so tired of doctors dismissing what I have to say" (Elliot, age 20)
Autistics and other minorities and multiply marginalized individuals must fight harder than neurotypical peers for the same level of care and consideration. In order to combat health disparities, physicians must experience a paradigm shift and put more trust in the ability of their patients, autistic or not, to accurately convey their concerns and explain their symptoms. The World Health Organization has called on providers to better engage with neurodiverse patients, and encouraged clinicians to "emphasize the key elements of autonomy and participation of service users in all aspects of their treatment" (WHO, 2015).This means that medical professionals must adopt more flexible practices, focus on more patient-centered care, and move beyond the knee-jerk reactions that come from a lifetime of deeply-rooted stigma and misunderstanding. Subconscious biases are at the root of dismissal, leading physicians to see autistic patients as less than human, and therefore unworthy of full consideration. Providers must confront these beliefs head-on in order to unlearn old ways of thinking and embrace a more affirmative neurodiversity-centered approach.
One manifestation of patient dismissal is communication breakdown; implementing practical adaptations could greatly improve patient-provider interactions. One hallmark of autism is atypical communication(ASAN, 2016), and autistic patients have the deck stacked against them when they are expected to communicate in "normal" neurotypical ways, especially in high-stress settings like doctors' offices and hospitals. The participants addressed their need for accommodations in several ways, from extra time to answer questions, to increased clarification, to adapted methods of nonverbal communication.
Many interviewees noted that they need patience in order to adequately answer questions, and since time is often in short supply in healthcare settings, they are left flustered and feeling like their complaints aren't truly being heard. Dylan, a 35-year-old, woman described how being less rushed has improved her healthcare experiences:
"It has made a world of difference to have a doctor who sits down and talks with me at length and doesn’t seem to be trying to get the information out of me as quickly as possible, which is invariably something that causes me to freeze up."
She explained that in her usual appointments she is left thinking of answers to questions long after they are asked, and so the extra time to discuss and think has been extremely beneficial. Others expressed their own frustrations at being "always rushed" and the lack of adequate time to communicate their concerns:
"I usually get the feeling that the doctor is anxious to wrap up our appointment quickly and move on to the next patient... In the ideal doctor's appointment, there is no rush or hurry on either end- both of us aren't stressed for time and can go through all my symptoms and concerns as we think of them" (Marley, age 27)
Hayden, a 59-year-old participant summed up the issue well, explaining that in his ideal appointment he would have more time, and providers would really listen, because he is fully capable of providing good information, "they just have to know how to draw it out of [him]". This goes back to the neurodiversity principle of presuming competence. Autistic patients are aware of what is happening in their bodies and their minds, and they can often communicate those issues if they are given the time and the right accommodations to do so. Feeling rushed is likely a complaint of most patients in the modern healthcare system, neurotypical or not. The difference is that autistic patients experience the same time crunch, but often with more difficulty articulating their thoughts and processing information than their peers.
Another suggestion from participants for improved healthcare experiences emphasized the importance of specific detail in patient-provider communication:
"I really like them asking specific questions, I get a lot of very general questions and it is harder for me to answer those because it is a little more open to interpretation and I am never sure if I am telling them what they need to know." (Oakley, age 29).
Others said that in their ideal visits providers would offer detailed explanations of tests, medications, procedures, and medical terminology. Healthcare settings and medical forms are ripe with opportunities for autistic patients to misunderstand or unintentionally miscommunicate. One woman explained how questionnaires and forms can be confusing in their lack of detail, and expressed a desire for more information on what is to be expected in adolescence and aging, stating: "I would like some in depth descriptions of what normal body processes are supposed to be like". Mental health screening tools are an example of a lack of clarity where an autistic person might have a need for detail. One potential issue arises when an autistic patient answers "yes" to questions like "do you hear things other people do not hear?", because many autistics with heightened sensory sensitivity dohear noises that do not bother neurotypicals, like the humming of lights or buzz of electronics, and may not realize that the question was referring to hallucinations. This type of communication breakdown is only exasperated by a tendency for providers to perceive non-verbal patients or those with atypical communication as "difficult" (Bachman, et al., 2006).
Several participants described a need for detailed communication in examinations and physical interactions, as well. Some noted touch aversion as a factor, which is common in autistics (ASAN, 2016), and wished that healthcare providers would at least alert them or ask permission before performing physical exams.
"(Ideally) if a physical interaction is happening, I know exactly what and why before anything." (Lake, age 29)
"[The doctor] grabbed my arms and put them together in a rudimentary test used to see if patients have carpal tunnel, touching me without my permission and humiliating me in front of a med student who was training with him that day." (Francis, age 23)
In the latter example, the problem was not so much that the doctor touched her, but that touch happened without warning, and in an effort to dismiss her concerns and "prove" that her complaints (which turned out to be somewhat serious) were not legitimate. Autistic patients might need extra communication to be comfortable in healthcare interactions, or maybe all patients- disabled or not- would benefit from more open communication and compassionate care.
Autistic patients can also benefit from understanding and flexibility with regard to the use of atypical or alternate means of communication. Providers' willingness to work with patients who may use augmentive and alternate communication (AAC), sign language, iPads, writing, or other methods opens doors to vital communication. When autistics are able to describe their symptoms in the way that works best for their particular neurodivergency, they are able to convey their concerns and needs more clearly than if they are forced to adapt to more traditional methods.
None of the participants in this research are fully nonverbal, however several individuals mentioned struggling with verbal communication at times and a handful discussed how writing improves their ability to fully express themselves.
"She doesn't care how I express myself once I'm there, whether through talking or writing, and she is not ever afraid when I rock, flap, tic, or otherwise stim" (Casey, age 28)
"One other thing I would mention is having doctors willing to read something I bring in as prepared information. I think a lot of the time I can explain something better through writing than through speech, especially when I am nervous or rushed. So often it (the written material) doesn’t end up getting used because they don’t have time for it..." (Dylan, age 35)
These two interviewees reflect different communication needs and preferences; Dylan prefers to prepare written material ahead of time when she has the time and space to think clearly, while Casey sometimes finds it beneficial to communicate by writing throughout the appointment.
Some autistic patients need an abundance of information to feel comfortable and increase understanding—for others that would be overwhelming. Providers may need to adapt their communication style based on the needs of each individual in their care. Smith (2014) and Nicolaidis, et al. (2015) have suggested ways to improve accessible communication, including embracing a myriad of alternatives to verbal speech, being open to new accommodation options, and respecting all forms of communication instead of classifying some as less acceptable (). Above all, flexibility in communication is key to successful healthcare interactions. And it is the responsibility of providers to accommodate and understand the health needs of each individual under their care.
While much of the existing discussion on accessibility focuses on a checklist of specific accommodations, it is often more complicated than that. Flexibility is a crucial part of all healthcare accessibility, which was apparent in the number of participant concerns that came down to rigidity and a providers' refusal to adapt. Clinicians must take the responsibility to ensure access—even if that requires adopting unorthodox practices or deviating from protocol.
Scheduling was one area of repeated concern brought up by the participants, including the ability to see a doctor soon after making the call to schedule, multiple options for communicating with the office (phone, online, etc.), and the ability to cancel or reschedule without being fined. Difficulty with executive function, including the ability to start or complete small tasks, is a significant part of autism (ASAN, 2016). Providers can empower patients and mediate some of the challenges of executive dysfunction by accommodating those who may call at the last minute, run late, or miss appointments, rather than punishing them. When possible, the importance of patient care should take priority over inconveniencing the physicians' office.
Another common complaint among interviewees had to do with waiting areas and physical spaces. Although there were similarities in their concerns (most specifically mentioned preferring no television) the needs of individual respondents varied, which reinforces the idea that flexibility is key to a truly accessible space.
"Ideally the office would be quiet, with mostly adults, and a real waiting room without televisions playing or loud music. Maybe something soft if people really needed it." (Francis, age 23)
"The biggest changes I'd make would be to the waiting rooms: no TV screens or loud background music." (Jessie, age 30)
"The ideal doctor’s appointment would begin by not having to sit in the waiting room and the lights being dimmer." (Kelly, age 20)
"(Ideally) the waiting rooms are quiet for the most part. I wear headphones & listen to music to help calm me down as a certain noise level just drives me up a wall." (Geri, age 25)
These responses mirror concerns of patients and providers in other studies, where patients named waiting rooms as a significant source of stress and sensory overload in doctor appointments (Warfield et al., 2015; Nicolaidis et al., 2015). While responses vary, common suggestions for improvement included having quiet or private waiting areas, and minimizing wait times as much as possible.
Again, personalized solutions are ideal. If the goal is to increase the frequency of care received by autistic patients, then they must be greeted from the onset of the appointment with a welcoming and accommodating atmosphere. Healthcare providers are responsible for creating a culture that prioritizes patients.
This study contains many limitations that could be addressed by future researchers. The sample size was small, and non-representative. The intersectional demographics provide an interesting perspective, but it may be useful to find a balance that is less- skewed toward multiply-disabled LGBTQ women. It would also be useful to have a non-autistic control population in future studies, and to ask for the same four experiences: positive, negative, typical, and ideal. The inability to compare responses to a non-autistic control is a major limitation of this research. The interviews could also be expanded to include more follow-up questions to explore the stories of healthcare interactions more deeply with the participants.
Discussion of Results and Questions for Future Research
The results of this research project support prior studies on healthcare accessibility for autistic adults. Participants shared concerns about the stigma surrounding autism and neurodiversity. The tendency of interviewees to withhold their autism diagnoses from providers adds to a body of conflicting research surrounding disclosure. There is a stark contrast between the answers in this study and that conducted by Lum (2014) in Australia- where respondents shared a hesitancy to disclose- versus the research conducted by the UK Westminster Commission (2016) - where an overwhelming majority of respondents expressed that they would like all healthcare providers to be aware that they are autistic. Perhaps there is an intersectionality factor at play here, since the majority of my participants (and all of those in the Lum study) were women, while the UK study had a more balanced gender representation. It is possible that autistic womenare specifically more inclined to withhold disclosure.
Participants in this research expressed a great deal of anxiety connected to healthcare interactions, and a subsequent inclination to avoid care. Previous surveys of autistic patients have revealed similar concerns, and there is a distinct correlation between health disparities and avoidance. It would be interesting to explore this connection more explicitly, and attempt to create concrete accessibility suggestions rooted in addressing the anxiety of autistic patients.
When exploring health disparities, disproportionately-high rates of suicide indicate that a specific inquiry is needed into mental health care access and barriers for autistic patients. Each new study on suicide and autism reveals a startling need for further investigation into the epidemic. It is a complicated issue, and will require complex solutions. Research is needed urgently to better address the mental health needs of the autistic population.
Earlier interview and survey research, as well as intracommunity discussions and anecdotal evidence, point toward a definitive trend of mistreatment committed by healthcare providers against autistic patients. This study revealed accounts of physical violence that have been largely absent from other research-- although it is hardly a rare phenomenon. Further research into the violence of the medical-industrial complex and harmful healthcare providers is needed to uncover exactly how widespread the abuse is. There cannot be a solution for a problem before a problem is revealed, therefore it is important to pull back the curtain on this quiet epidemic of violence so that it may be addressed. This is a complex issue, with a wide range of factors and variables, and so any research will only be scraping the surface. An autism-specific study examining physical and sexual violence perpetrated by physicians could be a good place to begin.
A more in-depth examination of diagnostic overshadowing and dismissal of patient concerns could provide insight into health disparities in the autistic population. There is a correlation between reports of dismissal and reports of avoidance, indicating an area of further research that could help provide solutions for inferior care and health outcomes of autistic patients- especially multiply-marginalized patients. Additional research is needed to more thoroughly examine the intersectional layers of health disparities and inaccessible care, and to address the epidemic of minimizing the concerns of certain patients.
Participants in this study supported the responses in prior research by pointing to communication challenges as a significant barrier to accessible, high quality, healthcare interactions, and flexibility in providers as an essential component of an accommodating experience. It is significant that interviewees in this research brought up so many of the exact concerns raised by previous studies, because the questions in my interviews were quite broad and allowed for infinite possible responses-- yet they landed on the same specific issues and suggestions present in earlier research with more specific and/or leading questions.
Above all, this research and the studies that came before have emphasized the need for autistic patients to be respected and taken seriously. Yes, there may be unique challenges, and patients may need outside-the-box accommodations, but addressing these concerns should be a part of providing high-quality, person-centered medicine. As one participant explained, "I would like more focus to be put on how I am feeling rather than how I look or how I act, and not just be treated like I am "difficult" because my disability is more complex than having a cold". Autistics, "difficult" or not, need access to care, and until the harmful trend of providers dehumanizing and dismissing patients is addressed, health disparities and premature mortality rates will persist.
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Activism focused on disability rights and healthcare access, taking care of my 4 dogs and 4 cats, and spending time with my family .
A combination of my sociological research methods class and my independent disability rights advocacy.