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AccessibleAcademia

Who: Morgan
Journal: PSU McNair Scholars Online Journal
Published: 2019
Title: Connections Between Sensory Sensitivities in Autism; the Importance of Sensory Friendly Environments for Accessibility and Increased Quality of Life for the Neurodivergent Autistic Minority

Full paper: https://pdxscholar.library.pdx.edu/cgi/viewcontent.cgi?article=1212&context=mcnair

“There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.”

• Roy, 2004

TW: brief mentions of suicide & sexual abuse.

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Autistic Population as a Minority Group

A minority group is defined as
“those who because of physical or social and cultural differences receive differential treatment… who regard themselves as a people apart. Such groups characteristically are held in lower esteem, are debarred from certain opportunities, or are excluded from full participation in our national life. Certain groups within our society occupy not merely a disadvantageous objective position but also tend to develop a conception of themselves as inferiors, as aliens, and as persecuted groups, which significantly affects their roles in the collective enterprises of the nation.”
Louis Worth, 1941

3/22

Autistic people are a neurominority, and they are a marginalised group. Like many marginalised communities, they have developed resilience, culture, community, & they continue to navigate a world which is not built for them.

“Many of the barriers faced by Autistics and others with disabilities arise not from the condition itself, but from prejudice and stereotypes that have the effect of excluding us from full participation as citizens with equal rights and responsibilities in society… When the message of autism awareness becomes one of stigma, dehumanization, and public hysteria rather than one of civil rights, inclusion, and support, we face a grave threat to our efforts to be recognized as full and equal citizens in our communities.”
Autistic Self Advocacy Network, 2019

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Autistic people has experienced continual oppression in the forms of ableism, paternalism, lack of employment opportunities, reduced personal agency, lack of appropriate accommodations in healthcare settings, and violence in education settings. Autistic people are at a higher risk than the general population for childhood abuse, sexual abuse, and sexual assault. This results in higher rates of psychiatric conditions in this population.

The roots of injustice begin with an imbalance of power. Those with power can define what is to be considered “normal”, and these definitions of normal provide the opportunity to define others as “less than”, “broken”, “sub-human”, or “savage”.

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One of the most significant forms of power held by the weak is “the refusal to accept the definition of oneself that is put forward by the powerful”
Elizabeth Janeway
quoted by bell hooks, 2000

“The question of person-first language is definitely important and cannot be disregarded. The way we use language affects those around us — in our immediate communities and in society at large. Trends of language have the power to transform ideas and attitudes. To dismiss this as “a silly semantics argument” denies the power of language.
Lynda Brown, 2011

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The marginalisation of the autistic population is increased by overlapping marginalised identities, such as gender, race, and class. This plays a role in the underrepresentation & underdiagnoses of autism in people of colour, and women & girls. The origins of the autism diagnosis was based upon the observation of middle class white male children.

For example, research has shown that where white children were diagnosed with developmental delays or learning disabilities, African American children were diagnosed with conduct disorders or adjustment disorders. They were also diagnosed 1.5 years later than their white peers.

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Chronic Stress

Therefore, autistic people navigate the world in a state of chronic stress. Stress may be caused by marginalisation, sensory divergence, social challenges, communication differences, or a number of other factors. Chronic stress is a lifelong experience for autistic individuals. This has a deteriorating effect on mental, emotional, & physical health.

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Co-Occurring Mental Illness & Suicidality

Autistic adults are 2.9 times more likely to be diagnosed with depression.

They are 22 times more likely to be diagnosed with schizophrenia.

66% of autistic individuals are considering or have considered attempting suicide.

35% have attempted suicide.

0.31% have died by suicide (compared to 0.04% of the general population).

Those at the highest risk of suicide are Black or Hispanic autistic men.

9/22

“Of particular concern is the fivefold higher rate of diagnosed suicide attempts we observed among adults with ASD compared to controls. Nearly half of the adults with ASD with a diagnosis of attempted suicide did not also have a diagnosis of depression, suggesting that depression may be underdiagnosed in the autistic population, resulting in lack of needed treatment.”
Croen et al, 2015

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Physical Impact of Chronic Stress

Long term exposure to stress can lead to a breakdown of body systems, and lead to ill health later in life, such as heart disease, hypertension, dementia, anxiety & depression, and compromised immune systems.

Autistic adults have a higher rate of medical conditions than the general population.
Commonly reported are:
immune conditions, gastrointestinal and sleep disorders, seizures, obesity, dyslipidemia, hypertension, and diabetes.

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Sensory Differences

Autistic people experience sensory stimuli differently to the general population.

Hypersensitivity refers to having a lower threshold for sensory input, and can lead to overstimulation.
Hyposensitivity refers to having a higher threshold, and therefore one is less affected by the external sensory environment, & requires more sensory input to register sensory sensations. This hyposensitivity results in less recognition, discrimination, registration of sensory input, and increases the craving for specific types of sensory stimuli. Individuals with hypersensitivities report more reactions to external stimuli, while individuals with hyposensitivities report more reactions to internal, body stimuli; combination of both hyper/hypo is reported by many autistic individuals.

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Sensory Experiences, Anxiety, and Depression

Research has found correlations between hyposensitivity and depression, and hypersensitivity and anxiety.

Heightened levels of anxiety impacts autistic individuals ability to cope with everyday stressors such as change, anticipation, sensory stimuli, and unpleasant events.

Research into levels of anxiety in the daily life of autistic adults is limited. However, it is clear that the differences in the sensory experiences of autistic adults significantly impact the ways that autistic adults interact with the world around them.

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Sensory divergence can have a powerful impact on the way in which autistic individuals navigate public spaces such as: educational and healthcare settings, human resource offices, criminal justice and legal offices, modes of public transportation, and grocery stores.

These spaces are over-saturated with sensory stimuli. The sensory landscape of these environments may play a part in limiting access to vital centres of public life.

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Barriers to Healthcare Access

Autistic people experience more barriers to healthcare than non-autistic people do. These barriers included having inadequate time to process & communicate with healthcare providers, sensory issues caused by the facility, and emotional regulation challenges caused by unexpected change to routine.

If sensory environments present a barrier to healthcare access, they likely also create barriers to accessing other public spaces. However, there is no research into this at the time of publication of this paper.

As sensory experiences are very broad within the autistic population, it is often overlooked. Collaborating with the autistic population in the creation of academic knowledge is not only ethical, it is long overdue.

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Self-Advocating Autistic Perspectives

For years, autistic people have not been able to be a part of the conversations about them.

One example of this is with regards to Autism Speaks, who have been met with resistance from the autistic community for promoting harmful narratives about autism, exclusion of autistic individuals and perspectives in their non-profit, and using the funds they raise for research that opposes the values of the autistic community such as searching for a cure, the development of behaviour modification techniques used to mask autistic traits, and genetic research looking for the autism gene.

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“Too often, parents of autistic children are bombarded with terrifying messages. They are told that their autistic child will destroy their marriage and their nondisabled children’s lives. They are told that their child’s happiness — and their own — depends on the child “getting better” by hiding their autistic traits, and to work toward this goal above all else. They are told to grieve for the hypothetical nondisabled child they had imagined, rather than to love and connect to the autistic child in front of them. These messages hurt autistic people, scare our families, and encourage our communities to fear and exclude us. Autism Speaks has played a central role in developing them.”
Autistic Self Advocacy Network, 2019

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“There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.”
Roy, 2004

The autistic community is not voiceless, in fact they have been speaking for many years and what they have to say is vital for the future of the autistic neurominority, and the future of autism research.

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Voices in the Community

Temple Grandin is a well-known author & speaker who works to promote a better understanding of the uniqueness of neurodivergent minds.

Amanda Baggs was one of the first autistic self-advocates to utilise YouTube as a platform for raising awareness.

“I find it very interesting that failure to learn your language is seen as a deficit but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than anyone admitting that it is themselves who are confused not autistic people or other cognitively disabled people… Only when the many shapes of personhood are recognized will justice and human rights be possible.”
Baggs, 2007

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There are many other self-advocates who work towards an understanding neurodiversity online. There are also organisations dedicated to this, including the Pittsburgh Center for Autistic Advocacy, the Autistic Self Advocacy Network, Autistic Women & Nonbinary Network, and Self Advocates United as 1.

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Partnership in Research

Self-advocacy is changing research. Partnerships between the autistic community & the academic world are beginning to form.

For instance The Theorizing Autism Project (Greenstein, 2014) conducted one-day seminars in 2014 to facilitate ethical collaboration between the autistic community members and academic researchers. This seminar conducted participatory workshops to strengthen collaborative partnerships and improve the CBPR process. These workshops lead to the creation of other similarly aligned organizations. The Participatory Autism Research Collective (PARC, 2019) based in the U.K. and the Academic Autism Spectrum Partnership in Research and Education (AASPIRE, 2019) based in the United States.

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The autistic neurominority is a resilient but misunderstood community. The struggles of this marginalized group are often hidden behind the veil of disability. The neurodiversity paradigm allows us to pull this veil back and consider the possibilities resulting from ethical allyship, inter-neurological fluency, and collaboration with this community in future research efforts. This paper was written to evaluate the factors that are impacting the quality of life for autistic individuals. There have been some positive breakthroughs in recent years, but there is still much work to be done.

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Many people in the field of autism research are looking for solutions to improve the quality of life for autistic people. Attempting to correct the problems experienced by autistic individuals using only the perspectives of the neuromajority is akin to trying to unlock the right door with the wrong key. The author believes that the key we have been looking for can be found in the perspectives of the autistic neurominority, and that this door can be opened by ethical collaboration with the autistic community.