Writing Sample: Increasing Accessibility for Survivors with Sensory Processing Disorders

The Americans with Disabilities Act has provided guidance on how to make public buildings accessible for people with physical disabilities. There is a large disparity in information about how to make spaces accessible for people with invisible disabilities. Sensory processing disorder is a prevalent experience that spans multiple disabilities, and even shows up in people who do not have a diagnosis. Sensory processing disorder is also exacerbated by experiencing a trauma. People who experience sensory processing differences experience ableism and barriers that may reduce their likelihood to report, or seek services for a sexual assault. Sexual assault service providers need to know how to adjust their services so that all people, especially people with disabilities, can access them. This paper will explore what sexual assault service providers need to know about sensory processing disorder and how they may be able to accommodate people with this disorder.

What is Sensory Processing Disorder?

Sensory processing disorder is when a person experiences difficulty processing their sensory input. A person’s sensory input is anything that they can hear, touch, taste, smell, or see. Sensory input also includes a person’s own body movements and spatial orientation, which are known as vestibular and proprioceptive senses.

According to a recent study funded by the National Institutes of Health, about 16% of the population is reported to have some form of sensory processing disorder (Kranowitz et al, 2016). One in 54 children is identified with autism spectrum disorder (ASD), a condition that is marked by the presence of sensory processing differences. An ASD diagnosis is four times more common for boys than for girls (CDC, 2020).

There are no clear explanations for this difference. One consideration is that boys may be at greater risk for developing ASD. Another consideration is that ASD can have different signs and symptoms in boys versus girls. This can contribute to differences in how ASD is identified, diagnosed, and reported (CDC, 2020). This means that service providers cannot rely on a specific diagnosis to identify which of their patients will have sensory processing disorder.

People with sensory processing disorder may have difficulty making meaning from the information their senses are providing them with, and the information may get scrambled or seem unrelated to each other. For example, if they see and hear a person speaking, they may experience those inputs out of synch with one another (Pietro, 2020).

People with sensory processing issues may experience too much or too little stimulation through their senses. If a person experiences high stimulation due to sensory input, they are said to experience hypersensitivity. If a person is hypersensitive, they may try to avoid sensory input. If a person experiences low stimulation or reaction to sensory input, they are experiencing hyposensitivity. They may seek out sensory input.

A person is not “a hypersensitive.” We would not recommend the use of this language because it is something a person experiences, not who the person is. Another notable reason we would not use this phrasing is because people with sensory processing disorder may experience hypersensitivity or hyposensitivity both in the same day. A stimulating sound that one day made a person feel overwhelmed and distressed may be a sound that they find themselves seeking for stimulation on another day (Bunim, 2013). The level of arousal and input, combined with learned self-regulation skills, will make a difference (Morin, 2021).

We will pay attention, now, to the types of sensory input that people may find themselves avoiding or seeking:

Visual input is what we see. Some examples of visual input would be patterns, certain colors or shapes, spinning or moving objects, and bright lights.

Auditory input is what we hear. Loud noises, sirens, and blenders provide a lot of auditory input. People to are hypersensitive may be distracted by sounds that no one else seems to hear. People with sensory processing disorders can be avoidant or may seek out repetitive or specific types of sounds, and even stimulation from their own voice.

Olfactory input comes from what we smell. Gustatory input is what we taste (Middletown Centre for Autism, 2021). People with sensory processing disorders may seek out certain tastes, food textures, or smells. They may also avoid certain tastes, food textures and smells. Due to hypersensitivity, they may be able to notice slight, miniscule changes in flavors, or find a scent overpowering when others do not.

Tactile input comes from touch. Textures, hot and cold, moisture and pain are all forms of tactile stimulation. Clothing that would not bother other people feels scratchy and irritating, shoes may feel too tight. People who are hyposensitive may seek hugs with lots of pressure, while they may avoid touch if they are feeling hypersensitive. Activities that involve bumping, jumping, crashing, and fast intense movement provide stimulation. Chewing on non-food items may also be a source of stimulation (Pietro, 2020).

The Vestibular system includes balance and movement, which includes the auditory and visual input we receive (Bell, 2019). Movement, balance, coordination (Pietro, 2020).

Our Proprioceptive sense is not one that many of us learned about in grade school, but it also provides input and information for us to process. Proprioception is our body awareness (Pietro, 2020), and spatial orientation (Morin, 2021). This information comes from all muscles and joints, which means it gives us information about needing to use the bathroom and feeling hungry, among other things (Bell, 2019).

A person experiencing hyper or hypo vestibular or proprioceptive sensitivity may also have trouble sensing the amount of force they’re applying. For example, they may rip their paper while erasing, pinch too hard, or slam items down on a table. If they are hyposensitive, they may also have a higher tolerance for pain (Pietro, 2020).

People with sensory processing disorders may behave in ways that are unexpected by neurotypicals. They may exhibit tantrum behavior, shutting down, or fleeing, without the ability at that moment to verbally communicate what they are feeling. Neurotypicals must try to remember that “all behavior is communication,” (Institute on Disabilities at Temple University, 2021) and work to understand what a person is trying to communicate. There are some unhelpful ways to respond to a person who is trying to communicate they are over stimulated. Demanding a verbal answer at that time, asking rapid fire questions, restraining the person, are all examples of responses that will escalate the distress the person is already experiencing.

In many cases, the behaviors that people find themselves engaging in to try to express that they are being over stimulated are not socially acceptable, and are perceived as defiant, or dangerous. These behaviors may include: acting out, fighting, meltdowns, spinning, rocking, hand-flapping, as well as problems with processing information (Bell, 2019).

A meltdown for a neurodivergent person is an involuntary reaction to sensory overload, stress, frustration, and other emotions or stimuli. Meltdowns are different for each person, but usually marked by strong reactions, emotion, and a loss of control of one’s body (CommunicationFIRST, 2021). A meltdown is a threshold phenomenon, which means that there is self-control right up to the moment of loss of control.

A meltdown is physically exhausting. The experiencer may need to rest afterward, eat or drink, or locate a specific sensory input like the pressure of a hug or softness of a blanket.

Another term for a meltdown is an “autonomic storm”, it is called this because the autonomic nervous system, which controls body systems like breathing, sweating and heartbeat rate, is running wild (Caldwell, 2008). This can also be understood as compared to a fight-flight-or freeze response, which also triggers the autonomic nervous system during trauma.

A visualization that was used in the book, Using Intensive Interaction and Sensory Integration: A Handbook for Those who Support People with Severe Autistic Spectrum Disorder, is by imagining an upside-down bottle, with an open bottom, like a funnel. As sensory input enters the wide bottom of the bottle, the narrower part, that is the end that is symbolizing the rate of processing the input, does not allow the input to run out as quickly as it is filling up. Eventually the funnel bottle with overflow (Caldwell, 2008).

If someone has experienced a meltdown, they may also experience a shift in their abilities. They may have been speaking and communicating clearly before, and suddenly cannot.

How are people with sensory processing disorder viewed?

Sensory processing disorder often falls through the cracks of scientific study. (Bunim, 2013). It is found in people with autism and other developmental disabilities (University of Michigan, 2021), as well as ADHD, brain injury survivors, people with cerebral palsy, Down Syndrome, OCD and even people with no formal diagnosis can experience it. There is still a lot of research that needs to be done on sensory processing disorder, especially in adults (Goodman-Scott, E., Burgess, M., & Polychronopoulos, G., 2020).

“SPD, like other DSM-IV recognized disorders such as ADHD and depression, can occur together with other mental disorders, but SPD quite often occurs alone, in the absence of other disorders” (STAR Institute, 2021).

Survivors of domestic violence experience a high risk of brain injury; and may never have received treatment or a diagnosis. A person may experience the symptoms of trouble utilizing sensory information and not understand why. An example of a common brain injury would be damage to the cerebellum. A sign of this damage is difficulties with balance when the eyes are closed. Their proprioceptive information isn't enough to maintain postural integrity.

Misophonia is another disorder that has been found to be marked by differences in the way a person’s brain is “wired,” resulting in extreme emotional discomfort related to human sounds like eating, drinking, and breathing (Harvard Health, 2019) (Kumar et al, 2021).

People with mental illness, who experience hallucinations also experience hyper and hypo sensitivity.

Some research has pointed to the following risk factors for sensory processing disorder:

· Low birth weight (less than 2200 gram

· Prematurity (less than 36 weeks' gestation)

· Prenatal complications

· Maternal stress

· Maternal illness

· Maternal use of medications

· Delivery complications

· Assisted delivery methods

· Ethnic minority

· Living with a single parent

· Lower socioeconomic status (STAR Institute, 2021)

Disorders of this kind are often attached to negative stigmas, due to being misunderstood. Neurodiversity, or the infinite variation in neurocognitive functioning within the species, allows all people to have their own strengths and abilities. If a person is neurotypical, their neurocognitive functioning falls within the dominant societal standards of “normal.” Because there is a dominant social standard of neurotypical function, there are people who are outside of that standard, or in the minority. Those people may be said to be neurodivergent because they diverge from the dominant standard of functioning (Walker, 2014).

The neurodiversity model is best processed when you look at disability through the social model. Individuals who are neurodivergent have many strengths and abilities in areas that neurotypical people are not as strong. This is because parts of the brain that aren’t as active in neurotypical brains are active in neurodivergent brains. If the world had been designed by neurodivergent folks, it would be the neurotypicals who would be navigating a world that wasn’t built for them. Today’s neurotypicals would be dis-abled.

Due to neurodivergence being looked at as a disability in our society, people with sensory processing disorder experience ableism. Ableism is the practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities. It is a set of practices and beliefs that assign inferior value and worth to people who have developmental, emotional, physical or psychiatric disabilities (StopAbleism, 2021). Neurodivergent people also experience micro-aggressions, or “everyday slights, indignities and put downs that [marginalized people] experience in their day-to-day interactions with people” (Desmond-Harris, 2015). Ableism and micro-aggressions are harmful and traumatizing.

People who have sensory processing disorder are often not believed about what they are seeing, hearing or feeling (Kranowitz et al, 2016). As mentioned earlier in this paper, people with sensory processing disorder may have difficulty connecting the stimulation to the meaning. They may also be able to sense things as very present and overpowering, when others are not able to sense them at all.

“Individuals with SPD-Sensory Over-Responsivity (SOR) have been reported to be 4 times more likely to also have internalizing problems (e.g., anxiety) and 3 times more likely to have externalizing problems” (STAR Institute, 2021).

“Children with SPD-SOR have been reported to have impaired participation in daily life activities (e.g., lower levels of activities, reduced frequency of activities, less enjoyment of activities) with a direct relationship between severity of sensory symptoms and degree of activity impairment” (STAR Institute, 2021).

“Additionally, adults with SPD demonstrate social-emotional difficulties and impairments in quality of life (e.g., increased symptoms of anxiety, decreased sense of vitality, decreased social functioning, decreased general health, and increased bodily pain” (STAR Institute, 2021).

Individuals with sensory processing disorder may have trouble distinguishing the distance between their body and another person's, leading to an inability to conform to social norms. A person who is hyposensitive may touch others without realizing it is not socially acceptable (Pietro, 2021). Hypersensitive people may not want to be touched, even (or especially) gently. Being bumped in a crowd may be very uncomfortable or painful for them. People may perceive them as picky and distant, while hyposensitive people may be perceived as clumsy, too loud, or having bad behavior (Morin, 2021).

What challenges does a SAFE exam present for people with sensory processing disorder?

Imagine you are standing in a hospital exam room, after being sexual assaulted.

What do you hear?

Beeping and booping from monitoring systems. Shoes clicking on the tile floor. Doors chiming. Phones ringing. The air conditioner running. Someone asking you questions about your medical history.

What do you smell?

Urine and bleach.

What do you feel on your skin?

It is cold and there is a crinkly sheet of paper sticking to your bare legs and back.

What do you see?

Bright lights. White walls and floors. Hallways that are undistinguishable from each other.

What are the internal feelings inside of you?

Fear. Anxiety. Do you need to use the bathroom? Are you thirsty?

This exercise is limited, in that it is based off of experiences and feelings you have had. You are still imagining your senses in the ways that you know them. People with hypersensitivity, as stated in this paper earlier, experience sensory input more intensely than neurotypical people. This exercise also cannot replicate the thought process and experience of fight-flight-freeze that is experienced after a traumatic event, such as a sexual assault. Not understanding processes, or the norms of a situation like a sexual assault exam contribute to a neurodivergent persons overwhelm (Nason, 2019).

Individuals with disabilities are four times more likely to be victims of crimes as non-disabled individuals (Wilcox, 2011); the experience of living in a world that was not built for you, and facing the stigmas that go along with being neurodivergent, are all very traumatizing. That is why a trauma-informed lens is vital. Safety, choice, collaboration, trust, and empowerment are to be prioritized with all neurodivergent survivors (Sexual Assault Demonstration Initiative Enhancing Sexual Assault Services, 2017).

During one young neurodivergent person’s experience of seeking help she found herself overwhelmingly frustrated at not being understood by the counselor. When the counselor then grabbed her hands in an effort to empathize, the young person felt herself going in to a meltdown where she was hitting the chair, the floor and herself. The counselor was afraid and called for support staff to take the young person out of the building (Hallett, 2019). This could be very impactful and prevent someone from seeking help again in the future.

Calling security or the police in response to a person’s meltdown could be extremely dangerous for that person and add a layer of trauma to their experience, or in the worst-case scenario, result in the death of the person experiencing the meltdown.

The “bad behavior” that people who are neurotypical see when a person experiences different cognitive functioning that impacts their sensory processing is a reaction. Though environmental design and niche construction, we can create room for people to utilize their best coping mechanisms to make sense of the input they are getting. Creating a positive sensory experience can help reduce the negative effects of neurodivergence and enhance the positive effects (Matusiak, 2019).

What are best practices we can implement?

Just as each person is different, each person's experience of positive or negative stimulation input is different; and each person will find different things helpful for managing and coping with stimulation overload. In this last section, we will try to share some general and overarching concepts that neurodivergent people and the professionals supporting them have identified as helpful. It is always important to be survivor-centered and recognize the person in front of you as a whole person with many aspects to their identity and lived experience.

Before you are seeing someone with a sensory processing disorder, ensure you know where to go to request interpreters who use ASL, or another signed language.

Give people lots of time to move through a process and permit them to take breaks as needed.

When you give instructions, wait longer than you usually would before repeating those instructions.

Speak in a low, calm, reassuming voice.

Ensure that the survivor understands who each person in the room is, and why they are there.

Minimize the number of people in the room.

Do not quiz or test the survivor. Sometimes you may need to check with them to see that they are oriented to time and space in order to ensure they can consent to an exam. As they are responding to these questions, provide them with the answers.

Most people probably will not feel comfortable to advocate for themselves and freely share information about the sensory load they are experiencing. Communicate clearly and specifically.

Some phrases you may want to adapt:

“I am going to need to get near you and touch you, is that ok?”

“I want you to tell me when you want me to stop.”

It is safe to assume that, after being in a traumatic situation and being in an unfamiliar environment where they are being intimately inspected, the survivor will be feeling very sensitive to their sensory input. View our Disability Trauma and the Medical Field paper for more historical context that may contribute to a person feeling unsafe disclosing sensory processing disorder in the exam room. Also, take into account other intersections that have trauma histories impacting their help seeking and experience with the medical field, like race, gender, and indigenous status to name a few.

Allow them space to move their bodies and stim. Stimming, or self-stimulation, is repetitive movement or action and helps neurodivergent people regulate their emotions. Some stim activities include rocking, flapping your hands, or playing with a fidget toy (CommunicationFIRST, 2021).

Reduce the amount of noise or lighting in a space. Install natural, soft and adjustable lighting. The flickering from fluorescent lights is a lot of input that contributes to fatigue and discomfort. Incandescent, LED, or halogen have been found in studies to have fewer negative impacts on people (Kinnealey et al, 2012). If your organization is looking at updating their lighting sources, finding options that allow dimming and customization would be ideal. A less intrusive update on your facilities current florescent light fixtures would be to purchase an adhering light filter, that can be found for about $30 (Hinds, 2020).

If possible, have a space to interview the survivor that is separate from the exam room. This space will be easier to create a calming environment with limited sensory inputs. This space can be utilized separately from the interview as a calming place for someone to lay down after a meltdown, if desired. If the space is already available, it can be outfitted with a comfortable sofa, blankets, and lighting for less than $1000.

Weighted blankets provide a calming pressure, and a satin or plush texture. You can get a weighted blanket for $100-150. A high-quality duvet cover is a good idea because there won’t be only one user, so frequent cleaning will be necessary. Expect to spend $100 on one (SensaCalm, 2021).

Fidgets should be available to help assist with self-stimulation and distraction. A variety of textures and modes should be made available, including fidgets that are chewable, or make clicking sounds (Raypole & Rishe, 2021) (SensaCalm, 2021) (Sensory Processing Disorder Parent Support, 2020).

Although minimizing the auditory input is a helpful strategy to avoid sensory overload, providing the option for positive sensory input may be desired. A sound machine that can simulate ocean waves, crickets, or a bubbling fountain can be a useful product to have in your interview room. Expect to spend $30-50.

As with the option of a sound machine, positive visual stimulation may be desired. An aquarium, light machine, or ocean waves projector may be useful (SensaCalm, 2020). Visual stimulation can also be taken from fidgets, like sensory bottles of oil and water with glitter inside them (Capturing Parenthood, 2017).

Allowing for other forms of communication, rather than strictly spoken communication, may help a neurodivergent person feel safer and be able to express themselves. Augmentative and Alternative Communication (AAC) tools and devices are helpful for identifying different ways to communicate with people (CommunicationFIRST, 2021).

Organizations can get a high-tech, customizable AAC app for their tablet, that will allow you to create picture boards to help a person communicate (Denome, 2020). This also presents a challenge, however, because many people need support learning a vocabulary set before they can begin using it (Institute on Disabilities at Temple University, 2017). One application that allows customization is TD Snap with Speech. This starts at $200 for the set-up (Mytobiidynavox, 2021).

Organizations are working to make AAC more accessible and more expansive because, people should not be limited when it comes to expressing themselves (Open AAC, 2021).

Note that not all individuals who are Deaf or hard-of-hearing understand sign language or can read lips. Not all blind persons can read Braille. Communication equipment that may be beneficial to victims with sensory disabilities include TTY machines, word boards, speech synthesizers, anatomically correct dolls, materials in alternative formats, and access to interpreter services. Responders should familiarize themselves with the basics of communicating with an individual using such devices. Let the individual specify the preferred method of communication. Be aware that victims with sensory disabilities may prefer communicating through an intermediary who is familiar with their patterns of speech (A National Protocol).

Resources for Continued Learning:

Job Accommodation Network: https://askjan.org/

https://www.understood.org/

Autistic Self Advocacy Network: https://autisticadvocacy.org/

CommunicationFIRST: https://communicationfirst.org/

The Arc: https://arcmi.org/

Disability Rights Michigan: https://www.drmich.org/

AAC support:

https://www.openaac.org/

https://disabilities.temple.edu/sites/disabilities/files/AAC- EprepLetterWordAid.pdf

https://www.up.ac.za/centre-for-augmentative-alternative-communication/article/56165/abuse-boards?fbclid=IwAR2G3ZFEBhIbTn-kocAsta4rbP1dT0xiCWXz_J3q81axSgSGtRHZBqtreXw

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38.

sentence confusion? [MM1] "People with sensory processing disorder may have difficulty making meaning from the information their senses are providing them with." <Is that correct context? And continuing... "The information may get scrambled or seem unrelated to each other. An example is seeing and hearing another person speaking with those two senses being out of sync with one another (Pietro, 2020). Thank you for this question! I am growing in my own understanding of what it means not just to experience overstimulation, but to have chronic sensory processing disorder. From the research I have done, I feel like I am interpreting correctly, but I have sent this to our disability expert, and proud autistic, Norm, for him to clarify. If you want to share your expertise as well, I am really open to it! :) [DC2] Oh no I was checking that I didn't fuck up the context that you had with that sentence by breaking it up that way. I was mostly trying to support making declarative sentences and removing run ons. [MM3] This includes the cerebellum, which is easily injured in domestic violence. A sign of this damage is difficulties with balance when the eyes are closed. Proprioceptive info isn't enough after damage to maintain postural integrity. [nd4]