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Barrier-Free Blog

Autism Awareness vs. Acceptance

4/20/2022

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April marks Autism Awareness Month. Every parent of a child with Autism Spectrum Disorder (ASD) and those with Autism Spectrum Disorder will tell you that every day, every month of every year is Autism Awareness Month. Autism is a lifelong disability. According to Webster's Dictionary, acceptance means 1. the act of taking or receiving something offered. 2. favorable reception; approval; favor. 3. the act of assenting or believing: acceptance of a theory. 4. the fact or state of being accepted or acceptable. Awareness means 1. the state or condition of being aware; having knowledge; consciousness. 

Awareness is knowing that something is happening. 
Acceptance is seeing a person for who they are. 
Awareness is focused on shortcomings or deficits. 
Acceptance is focused on what you're good at and what can you do for yourself. 
Awareness means you can identify a neurodiversity. 
Acceptance means you're able to talk to neurodiverse individuals and gain understanding and compassion. 
Awareness is trying to cure me. 
Acceptance is not trying to cure me. 
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Image created by Maisie Moore she/they - Autism Advocate @mini.moores
Sources:
https://nsadvocate.org/2018/03/20/autism-awareness-or-acceptance-two-very-different-mindsets/
https://www.instagram.com/mini.moores/​
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Written by Emily Wachter

Emily Wachter is the owner and entrepreneur of Photography through Autism. She is a lifelong writer and photographer with a passion for disability rights, social justice, and psychology. She is a college student at Carroll Community College with dreams of being a social worker. Emily has spoken on a number of disability panels on living with autism and experiences of bullying. She is involved with a number of disability groups in Maryland, including YoungLife Capernaum, Disability Express Group, and Special Olympics. In her free time, she likes spending time with family and friends, coloring, and shopping.

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Autism Masking

1/13/2022

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Putting on a mask in theater turns a person into a completely different person. When we are in social settings, for both neurotypical and neurodiverse people we put on appearance and behaviors that we are ok even if we are struggling. Our personal world could be a burning dumpster fire and we would tell other people that we are fine. 

What is autism masking? 
Autism masking is precisely what it sounds like- camouflaging your autism traits to fit in. "Masking is a desperate and sometimes subconscious reaction to an emotionally intimidating situation. It manifests as a natural adaptation strategy to navigate an environment our brain finds challenging," Augustina, @theautisticlife, autism self-advocate. 

What does autism masking look like? 
  • mimic peers or characters
  • have scripted conversations in our heads 
  • force ourselves to maintain eye-contact
  • suppress stimming behaviors (Stimming or self-stimulatory behaviors include hand flapping, finger flicking, rocking back and forth, watching an object spin, and/or listening to the same song/sound over and over again. Stims vary from person to person. Stimming is often used as a way to manage emotions like fear, anxiety, or excitement.)
  • imitating smiles and other facial expressions
  • mimicking gestures
  • hiding or minimizing personal interests developing a repertoire of rehearsed responses to questions
  • Not expressing emotions physically (like jumping up and down when happy)
  • Not talking to ourselves
  • constantly monitoring their own behavior 

Why does a person with autism mask?
There are several reasons why a person masks and is different for each person with autism. 
These include: 
  • feeling safe 
  • avoiding stigma 
  • avoiding mistreatment or bullying 
  • make friends and other social connections 
  • to fit in or to feel a sense of belonging 

What are the effects of masking autism?
  • exhaustion 
  • not having a sense of self 
  • meltdowns, shutdowns, and burnout

Meltdowns are often the result of highly stimulating situations or create high levels of anxiety that feel like they can't be escaped. When someone is in this situation, their reaction is flight, fight, or freeze. If the person cannot afford to escape, it leaves two options: fight or freeze. Meltdowns are similar to the fight response. When an autistic person has a meltdown, they often have increased levels of anxiety and distress. 

Autistic burnout is the intense physical, mental or emotional exhaustion, often accompanied by a loss of skills, that some adults with autism experience. Many autistic people say it results mainly from the cumulative effect of navigating a world designed for neurotypical people. Burnout may significantly affect autistic adults who have strong cognitive and language abilities and are working or going to school with neurotypical people.

Read more about the effects on mental health here
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Photo Credit: @21andsensory on Instagram https://www.instagram.com/21andsensory

If you’re someone who isn’t autistic, what can you do when faced with a masking autistic person? 
  • Find ways to make that person feel comfortable or safe around you. Maybe it's going into a quieter environment or doing an activity that doesn't require talking. 
  • Ask them questions. This can be about anything. For me, it makes me feel like I can trust them and you want to get to know me. 
  • Be respectful. If you wouldn't say it to one of your other friends don't say it to us. 

​What does autism masking look like for me? 
For me, I definitely masked through all my years in public school. I would be the "perfect" student. I watched the other kids see how they acted and then copied them. This doesn't align with my true self so I felt unhappy. In middle school, I would float social groups and didn't feel like I had a place to be me.

At times, I would come home and have a meltdown. Lack of accommodations or accommodations and services being provided added to the causes of my meltdowns. The only time I received the accommodations that I needed was when I went to the local vocational school. I had my own 1:1 aid, who prepared me for tests, read the tests to me, and helped me stay on top of assignments. I was treated like any other neurotypical student. I had a lot of success at the vocational school including coming in 3rd place at the SkillsUSA competition in broadcasting and news. Much of this success is due to having proper accommodations and following the individualized educational plan (IEP). 

When I transitioned from high school, I wasn't receiving services from the Department of Developmental Disabilities (DDA). I had no support and was basically left to fend for myself. The Division of Rehabilitation Services (DORS) got me into a job preparation program through Goodwill. I was lucky enough to land an interview at Copper Ridge with the help of a job coach through Goodwill. The job coach prepared me for the interview and I was able to have the job coach come with me on the interview which calmed my nervousness.

I got the job and started working part-time. It took me a while to learn everything I was supposed to do and to get comfortable in the environment. I soon took on full-time hours due to staffing issues I'm able to work full-time hours, but it took a lot out of me. For me, there was a social demand all day for 8 hours. I always had to talk to somebody especially since I was working with older adults who had some form of a memory disorder.

Trying to remember all the tasks I had to do was difficult on some days. When I had an unstable schedule, it was challenging for me. I had to advocate for a more consistent schedule. All of these things lead me to be exhausted. My last year at that job I was working full-time and taking a few classes. I'm not sure how I managed that honestly. I have since moved on from this job. 

I can say now I don't mask all the time. There are certain times I mask for safety reasons like when I go out into the community, in college classes, and sometimes at my current job when I'm in a meeting or training. When I mask it's something that automatically comes on. It's like flipping a switch. I'm on a very slow process of learning to unmask. I don't have all the answers but I can say I have a better self-identity than I did when I was younger. If I'm with the right group of people where I know that no one will make fun of me, I am more comfortable to unmask and be my true self.
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Emily with her friends at Barrier-Free's Social Club outing to the Maryland Corn Maze.
Sources: 
https://soyoureautistic.com/masking-camouflaging-mimicking-2/
https://themighty.com/2018/11/long-term-impact-autistic-masking/
https://www.accessibility.com/blog/autism-masking
https://raisingchildren.net.au/autism/behaviour/common-concerns/stimming-asd#:~:text=Stimming%20is%20repetitive%20or%20unusual,reduce%20their%20need%20to%20stim.​
​https://www.ambitiousaboutautism.org.uk/information-about-autism/behaviour/meltdowns-and-shutdowns​
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Written by Emily Wachter

Emily Wachter is the owner and entrepreneur of Photography through Autism. She is a lifelong writer and photographer with a passion for disability rights, social justice, and psychology. She is a college student at Carroll Community College with dreams of being a social worker. Emily has spoken on a number of disability panels on living with autism and experiences of bullying. She is involved with a number of disability groups in Maryland, including YoungLife Capernaum, Disability Express Group, and Special Olympics. In her free time, she likes spending time with family and friends, coloring, and shopping.

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The Intersectionality of Neurodiversity & the LGBTQIA+ Community

10/10/2021

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By. Britt Burr, Creative Director

In the Broadway musical
FUN HOME, Alison Bechdel, the lesbian protagonist, tells a story about the discovery of her own sexuality and her relationship with her gay father. This storytelling, narrated by Alison, is done through a series of vignettes set in the past. In one vignette, a young Alison sits with her father at a diner while he drinks his coffee. A delivery woman enters. Described by Alison, the delivery woman is an “old-school butch”. This is Alison’s first experience seeing a lesbian outwardly expressing a style that she inwardly desires for herself.  Alison sings “Ring of Keys”—a reference to the woman’s massive number of janitor-style keys strapped to her belt loop. 


In the song comes my favorite line: Do you feel my heart saying hi?
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Photo from "Fun Home" Credit: Playbill (https://www.playbill.com/article/tony-winning-musical-fun-home-closes-on-broadway-today)

​There is an innate understanding I have when it comes to autistic people. I don’t mean this to toot my own horn, and I realize that everyone with autism is different. I say this humbly knowing that if you’ve met one person with autism, you’ve met one person with autism. However, my general understanding of this population is something I have tried to figure out for a long time. I have a deep level of intrinsic knowledge when it comes to interacting and engaging with people that are neurodiverse. I’ll be minding my own business shopping at Target and then, the next thing I know, I have managed to find the only autistic person in the store—or they find me. 

In the past, I have chalked this up to being in the field for a long time—able to point out certain indicators that others may have easily overlooked. Or, I chalked it up to having an autistic father and seeing similarities in him, that I see in others. And sure, these things have definitely helped me, but the understanding is still much deeper. 

But what exactly is it? Maybe it was my own neurodiversity? Not only am I gay, I have ADHD. At times, my ADHD can exhibit itself in ways that are similar to those on the spectrum. Sometimes I have abilities that feel like “super powers”—being able to knock out tasks in record speed, or writing a 15–20-page research paper in under an hour. I can observe, process, and retain information rapidly and can often figure out smarter, creative ways to do things to save more time; opposed to others that may work “harder” or longer only to exert more energy. These skill sets have made me great at what I do. 

In fact, as I write this right now, I am in my world of hyperfocus. I am on cloud nine. My mind is reeling. I am so into this. Nothing around me exists. It is me and this blog. And as I peel back the mask for you to see inside this wacky head of mine, I am both anxious not knowing how you will respond, and ecstatic because I finally get to talk about this.    

But I know the crash will come soon and the fatigue will set in. So, my hyperfocus comes at a cost. And, I am not without other struggles in my life. 
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Photo Credit @ADHD_couple on Instagram
I succumb to time blindness—not being able to predict how long a task will take, or getting completely immersed in a task where hours have flown by in a blink of an eye. I have a high level of justice sensitivity where I feel the need to advocate for every inequity I come across. If not in constant check, I will likely voice my concerns uncensored should the opportunity present itself. This is paired with a low tolerance for bureaucracy and arbitrary rules of society. 

And info dumping —get me rolling on a topic I am passionate about and you’re likely to be sitting there for a while. Thank you for sitting here for a while.  

These things have made me who I am and have paved the way for Barrier-Free to succeed—because I get it. WE get it. My own neurodivergence paired with my lived experience acts as a translator between the neurodiverse and the neurotypical world. 

But still, there is a connection here that we’re missing…

It wasn’t until I expressed this to my wife, Lauren, who indicated she felt the same way—that a correlation between neurodiversity and the LGBTQIA+ community exists. We began to name all the queer people we knew that were either autistic, or had a family member on the spectrum. 

WOAH. 

Hang onto your hats. 
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Intersectionality. A crossroads where two seemingly different things overlap. The two things: Neurodiversity and the LGBTQIA+ community. 

Of the 34+ queer people Lauren and I could name off of the top of our heads (people in our immediate orbit), 23 of them either had a sibling, parent, aunt, or uncle on the spectrum, were on the spectrum themselves, or personally identified as having some type of other neurodivergence (i.e., ADD/ADHD, or OCD). Interests peaked, we wanted to know, have other researchers recognized this yet? Is this even on people’s radar?! 
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Photo Credit: Open Doors Therapy (https://opendoorstherapy.com/the-double-minority-effect-identifying-as-autistic-and-lgbtq/)

​Knowing that there are variant genes surrounding sexual orientation (Ganna et al., 2019) and that autism runs in families (NIH, 2021), we “hit the books” and gathered some more empirical research. 
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In a recent study,  247 autistic women were interviewed regarding their sexual orientation (Bush et al., 2021). Among them, over half reported that they fell on the asexual spectrum—i.e., never or rarely experiencing sexual desire. The other half identified as either demi-sexual (experiencing sexual desire only after a deep personal connection), bisexual, or pansexual. Only 8% (approx. 20 people) of the entire sample of 247, identified as strictly heterosexual. 

There are also elevated rates of gender nonconformity among autistic populations (Warrier et al., 2020). The reasoning behind this is not entirely clear, but there is a prediction that it is attributed to the autistic trait of not conforming to social rules (Kallitsounaki et al., 2021). Because there is a divergence in interpreting certain social norms, autistic people are not bound by the conforms of society, thus they exhibit themselves how they want without social pressures weighing them down.  

It is predicted that some queer individuals with invisible neurodivergence may have gone undiagnosed due to the social stigma surrounding the LGBTQIA+ community (Moreno et al., 2017). Sometimes queer people are met with derision when it comes to routine examinations and check-ups as they are forced to answer uncomfortable questions from often uneducated (in terms of queer culture edification) and unempathetic healthcare providers. This has possibly led to a discrepancy in neurodiverse LGBTQIA+ individuals receiving diagnoses--a diagnosis which could permit helpful accommodations. 

There is more research that needs to be done, as these concepts are relatively new, hence the date of their publication. Nevertheless, the intersectionality between LGBTQIA+ individuals and neurodiversity cannot be overlooked. As always, there are outliers in research.  Some people can be strictly gay, or strictly autistic—with no queer/neurodivergent markers, but all in all, a correlation is noticed here. 

Which leads me to my next thought…

Maybe the autism spectrum and the spectrum of queerness are not spectrums at all—at least not separate spectrums. Or, perhaps these spectrums can overlap. They don’t have to, but they can. 
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So, when a queer person encounters a neurodivergent person, or a neurodivergent person encounters a queer person and you feel that pull in your gut…

Maybe it’s just our hearts saying hi.  

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Britt, Lauren, Rosemary, & Mike at the Westminster Pride Festival representing Barrier-Free on July 9, 2021

Join us at OUT Loud

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OUT Loud, is a social and peer-support group for neurodiverse LGBTQ+ folx to gather, build community, and make supportive connections.  We celebrate the intersectionality between the neurodiverse community and the LGBTQ+ community.

​References


Bush, H. H., Williams, L. W., & Mendes, E. (2021). Brief Report: Asexuality and Young Women on the Autism Spectrum. Journal of Autism and Developmental Disorders, 51(2), 725–733. https://doi.org/10.1007/s10803-020-04565-6

Ganna, A., Verweij, K., Nivard, M., Maier, R., Wedow, R., Busch, A., Abdellaoui, A., Guo, S.,  Sathirapongsasuti, F., Lichtenstein, P., Lundström, S., Långström, N., Auton, A., Mullan, K.,  Harris, Beecham, G., Martin, E., Sanders, A., Perry, J., Neale, B., Zietsch, B. (2019). Large-scale GWAS reveals insights into the genetic architecture of same-sex sexual behavior. Science, 371 (6536), 1-9. https://www.science.org/doi/epdf/10.1126/science.aat7693

Kallitsounaki, A., Williams, D. M., & Lind, S. E. (2021). Links Between Autistic Traits, Feelings of Gender Dysphoria, and Mentalising Ability: Replication and Extension of Previous Findings from the General Population. Journal of Autism and Developmental Disorders, 51(5), 1458–1465. https://doi.org/10.1007/s10803-020-04626-w

Moreno, A., Laoch, A., & Zasler, N. D. (2017). Changing the culture of neurodisability through language and sensitivity of providers: Creating a safe place for LGBTQIA+ people. NeuroRehabilitation, 41(2), 375–393. https://doi.org/10.3233/NRE-172187

National Institute of Neurological Disorders and Stroke (2021). Autism Spectrum Disorder Fact Sheet: What Roles to Genes Play? https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Autism-Spectrum-Disorder-Fact-Sheet#3082_6

Warrier, V., Greenberg, D. M., Weir, E., Buckingham, C., Smith, P., Lai, M.-C., Allison, C., & Baron-Cohen, S. (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nature Communications, 11(1), 3959. https://doi.org/10.1038/s41467-020-17794-1

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Written by Britt Burr

Britt Burr is Barrier-Free's Creative Director & Founder.  She is passionate about building a more inclusive world for all and advocating for underserved populations.

Britt is a Registered Drama Therapist (RDT) with the North American Drama Therapy Association. She specializes in creating and implementing original pieces of theater for individuals with intellectual and developmental disabilities and those on the autism spectrum, as well as teaching multiple workshops and classes geared towards and aided with expressive arts. 
​

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The Way I Self-Identify as a Person on the Autism Spectrum

9/4/2021

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This post is inspired by Tiffany Hammond of fidgets.and.fries on Instagram. 

Tiffany writes in her Instagram post, "I don't talk about identifiers. Most you will get out of me is, I am autistic, but I ain't gonna flip my lid cause you say I 'have autism.' I don't like the way the argument is presented on both sides. I wish people were allowed to use both interchangeably in certain settings (such as articles) or with those who aren't quite sure how they refer to themselves (such as Aiden). I wish that deeper conversations about other important issues could happen and not be derailed because someone said 'with autism,' or 'Autistic.' I wish there were spaces in the community for those like my son he doesn't wanna be *just* 'autistic.' He doesn't want to wear autism like a skin. He wants people to see him beyond his diagnosis and for him and so many others have an autism doesn't take away the fact the autism is an integration of part of his being it simply means he wants to be more than just his autism. That he is more than his autism." 

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Tiffany, owner of @fidgets.and.fries on Instagram (photo used with permission)
In the disability community and between care professionals, there's a divide on the language used to describe a person with a disability. There are two types of identities used to describe. One is  called person first and the other is called identity first. Person first language sounds like "person with a disability," "woman with cerebral palsy," or "student with an intellectual disability." Person-first language uses the disability as a secondary identifier. Identity first language is the opposite of person first language. Identity first language sounds like "a disabled person," "autistic person," or "deaf person,"  Identity-first language puts the disability before the person. 
​
For me personally, I don't like identity-first language. I don't like the word "autistic." I have autism and it does affects every part of my life. "Autistic" gives me the wrong connotation about autism. Autism is a part of me, but it's not the only part.  

What I want to be called depends on where in my social circle a person falls. If you're a stranger, researcher, doctor, or person in the community, I'm only comfortable with person-first language. I find it offensive if they use identity-first language. If you're an acquaintance, friend, or family I don't mind if they use identity-first language, but I still prefer person-first language. 

When we are talking about individuals with a disability, there are certain words that should never be used. These include "handicap," "impaired," "wheelchair bound," "confined to a wheelchair," "suffers from," and "retarded." When we are discussing language around disability we have to remember every person will have different preferences on how the prefer to be addressed. Some may only want person-first, some identity-first, both, or neither one. As care professionals, we have to respect each individual's choice on how they like to be identified. ​

Sources: 
https://www.instagram.com/fidgets.and.fries/?hl=en​
​https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/

https://autisticadvocacy.org/about-asan/identity-first-language/
​
People-first vs. Identity-first by David Hoff & DeBrittany Mitchell https://ctaa.org/wp-content/uploads/2019/01/David-Hoff.pdf

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Written by Emily Wachter

Emily Wachter is the owner and entrepreneur of Photography through Autism. She is a lifelong writer and photographer with a passion for disability rights, social justice, and psychology. She is a college student at Carroll Community College with dreams of being a social worker. In addition to autism, Emily has a plethora of other physical and mental conditions, which include: Attention Deficit Disorder, Generalized Anxiety Disorder, Depression, 3Q29 Deletion Syndrome, Non-classical Diamond Blackfan Anemia, and Deaf in my right ear. Emily has spoken on a number of disability panels on living with autism and experiences of bullying. She is involved with a number of disability groups in Maryland, including YoungLife Capernaum, Disability Express Group, and Special Olympics. In her free time, she likes spending time with family and friends, coloring, and shopping.

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My Reaction to "The Reason I Jump" Documentary as an Autistic Adult

6/21/2021

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DISCLAIMER: I strongly encourage you to read The Reason I Jump or watch The Reason I Jump documentary on Netflix before reading this blog post. I'm going to be giving spoilers into the documentary.  
​

The Reason I Jump is a book written by a non-verbal, autistic 13 year old boy, Naoki, living in Japan. The book describes the thoughts and feelings of Naoki as he navigates the world being unable to speak. He gives a very detailed account into his life.  

The Reason I Jump documentary follows the lives of five non-verbal or minimally verbal neurodivergent people. The documentary shows the challenges and victories of living with autism from people around the world. Jerry Rothwell paints the unique sensory experience of those with autism through multiple filming techniques including close-ups and heightened sound. It follows the lives of Joss, Amrit, Ben, Emma and Jestina. 

Naoki describes his memory with the phrase, “Time is a continuous thing with no clear boundaries, which is why it’s so confusing … I imagine other people’s memories are arranged continuously like a line. My memory is more like a pool of dots – memories are all scattershot and never connected in the right order.”

Personally, I would say time can be confusing. For example, if I'm doing a task I enjoy it's hard for me to stop doing it. My long term memories feel like they just happened yesterday and it doesn't matter whether it's a good or bad memory. 
​
If I have been overstimulated at work or I am coming back from time in the community, I will turn the lights out at home to block out additional sensory input.

​Naoki describes his sensory experience as "So how I see the world you may be looking at the exact same thing as me, but how I perceive it maybe different. When you see an object, you see the entire thing, but for me the details appear first and then the entire thing"  For me, I would say I notice the details first and then the whole object. It sometimes takes me a minute to figure out what I'm looking at. This makes me be able to see things other people wouldn't recognize or if someone loses something I'm able to find it faster than others.

He goes on to say, "Everything has its own unique beauty when a color is vivid or eye catchy, my heart kind of skips a beat and I can't concentrate on anything else." For me, I like looking at things lava lamps, rain falling, looking at pictures and small visual timers. Something about watching it calms me. Music also calms when I play my specific playlists as well as riding in the car. Any noise that's loud or repetitive will drive me nuts. Tapping, a blow dryer, loud music, phones ringing, a dog repeatedly barking. These are all things that I have a hard time handling.

If I have been overstimulated at work or I am coming back from time in the community, I will turn the lights out at home to block out additional sensory input. Joss's parents describe his childhood sensory experiences as positive and that they were able to provide what he needed. Joss likes lights and water. I would say my sensory experience was mostly positive, with the exception of my extreme fear of dogs.
 My mom tells the story of when we were on a walk and I essentially had a meltdown because the dog was across the street. I would be afraid even if it was nowhere near me. I didn't want the dog to jump on me or anything that a dog does. The fear then turned to large dogs as I got older. The only way I got over that was to be around dogs and to have a positive experiences around them.  

Naoki describes his meltdowns as " There are times I can't act even though I want to. My whole body belongs to someone else as if I'm remote controlling a faulty robot. I feel hopelessness. Even when I make a tiny mistake, it causes a meltdown or panic attack. I'll do anything to get away. I hate myself. I just hate myself." I'm going to say this right away, when a person with autism has a meltdown they have no control over themselves. They're not doing it for attention and its not something that needs to be controlled. Some things that spark a meltdown for me are if a sudden unexpected change occurs, if a place is too crowded, when things feel out of control, if I made what feels like a huge mistake, or if I have to process a lot of information in a short amount of time. There's nothing really anything anyone can do when I have a meltdown. I mostly just need time and space. Time as in actual time. Space in terms of not be around people or to move away from the circumstance. I don't need someone to talk me out of it because it will not work.
 

Below is a video of what it's like to have an autism meltdown, created by The National Autistic Society. ​

​Naoki describes speaking as being like an unknown language, "As soon as I try to speak with someone my words vanish. There's a gap between what I'm  thinking and what I'm saying." He goes on to say, It's as if I'm drowning in a flood of words except the words I'm familiar with." Personally, when I'm speaking, my thoughts flow faster than the rate of the conversation. I will think one thing, but my mouth will say something different. I will know what I'm saying and meaning, but the person might not be able to understand what I'm saying. For me, communication in that aspect is frustrating. Communication for me is something that exhausts me. It's physically and mentally draining for me to carry on a conversation. There's a plan in my head of, "What am I going to say next," or "What we could talk about," or "What are they thinking about me and what am I thinking about them?" I often am practicing having a conversation in my head before it actually happens. These thoughts happen, if I have a job interview, if I'm going to be meeting someone new, or if I have to bring a concern up to someone else. 


Along the same lines, communication is often connected to loneliness. Naoki describes loneliness as, "'Don't worry about him. He wants to be alone. He would rather be on his own.' How many times have I heard this? The truth is I want to be around other people. No human being really wants to be left alone." One of the most common experiences of those with autism is loneliness. People with autism become isolated from the world because it's hard to form and maintain social relationships. If we, as neurodiverse individuals don't have structured social environments we will remain isolated from the world. For me, my isolation wasn't felt until high school. I think that's when I realized I wasn't like everyone else. Much of my transition after high school was isolating because services weren't in place. 

Naoki describes his stims as, "What is the reason I jump? I react physically to happiness or sadness, but when I'm jumping it's as if my feelings are going up to the sky." Most individuals with autism stim or engage in self-stimulatory behaviors, some more obvious than others. These can present in typical ways or socially acceptable behaviors like twirling your hair, tapping your foot, humming, whistling, biting your nails, tapping your pencil, or cracking your knuckles. They can also show up in atypical ways or ways that aren't socially acceptable such as hand flapping, jumping repeatedly, unusual vocalizations, chewing on non-edible items, covering your ears, or walking on your tippy toes. There are many reasons a person with autism stims that include soothing a medical problem, providing sensory stimulation, as a way to "tune out" or "block out" the world, or a way to communicate emotions. Stimming behavior isn't something that needs to be stopped or contained. ​
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Photo from Indiewire, "‘The Reason I Jump’ Review: A Humble and Humane Documentary Profile of Nonspeaking Autistic People"

​David Mitchell who co translated The Reason I Jump says Naoki writing the book is a double bind. Some people believe that Naoki couldn't have written the book. Others say that he wrote the book and therefore can't have autism. This is a battle I face everyday as someone with autism. People assume that because I can talk, interview, hold down a job, and drive locally that I don't have autism. Many people have said that I don't look like I have autism. My question is then, what does autism look like? There's a saying in the autism community that if you've met one person with autism, you've only met that person. This means every person with autism has a unique experience and they way they interact with the world. The truth is autism is something you can't see nor is it something you can away from a person identity. Autism is woven into every part of my being.  Autism seeps into every aspect of my life whether I want it to or not. 

This means every person with autism has a unique experience and they way they interact with the world. 

​The documentary also highlights, Ben and Emma, British teenagers who are also minimally verbal.  The pair have a unique friendship. They have known each other for 20 years. and were each others first friends. They both communicate through alphabet letter boards and rapid prompting method which has some skepticism within autism circles. I'm not going to go into full detail, but I think as long as the communication partner does the correct actions I have no problem with it. Learn more about rapid prompting method here: 
https://www.asha.org/policy/ps2018-00351/
https://asatonline.org/for-parents/learn-more-about-specific-treatments/rapid-prompting-method-rpm/​
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Ben says on his letter board that he never dreamed that communicating on a letter board would be possible and it worked. Ben and Emma are both homeschooled. Ben describes his education before being homeschooled as having his civil rights denied. I think that his description of the communication tool is powerful and profound.  Emma shares that their friendship offers some peace from the world and Ben says the meaning of their friendship can't be described in words. Emma says communicating on her letter board has allowed her to finally share how she feels about her friendship with Ben. 

For me, connecting with others with disabilities is easier than connecting with neurotypical individuals. It's easier to connect on a deeper level. There's a mutual level of understanding between the two of us. It's easier to communicate our interests and triggers. Our friendship allows time for both of us to communicate and respond. There's less pressure to perform or be "normal" within the conversation. There's less thinking about me and thinking about them. It's not that I totally forget about them, the chatter in my mind is just less when I'm with them. 

Source: 
https://www.theguardian.com/film/2021/jan/09/the-reason-i-jump-behind-a-groundbreaking-film-on-autism​
View the documentary: 
https://www.netflix.com/watch/81405327
Purchase the book:
https://www.penguinrandomhouse.com/books/227014/the-reason-i-jump-by-naoki-higashida/
​

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Written by Emily Wachter

Emily Wachter is the owner and entrepreneur of Photography through Autism. She is a lifelong writer and photographer with a passion for disability rights, social justice, and psychology. She is a college student at Carroll Community College with dreams of being a social worker. In addition to autism, Emily has a plethora of other physical and mental conditions, which include: Attention Deficit Disorder, Generalized Anxiety Disorder, Depression, 3Q29 Deletion Syndrome, Non-classical Diamond Blackfan Anemia, and Deaf in my right ear. Emily has spoken on a number of disability panels on living with autism and experiences of bullying. She is involved with a number of disability groups in Maryland, including YoungLife Capernaum, Disability Express Group, and Special Olympics. In her free time, she likes spending time with family and friends, coloring, and shopping.

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