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. 
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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. ​

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.  
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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. 
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​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. ​

​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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Everyone makes decisions everyday. Some decisions are small while others are large. 
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Sometimes we need help from others to help us make decisions. 

There are decision-making principles to keep in mind when making a decision with your team.
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Decision-Making Principles:
•Everyone has the right to make their own decision(s) especially about things that affect them. 
•Every effort should be made to support people to make their decisions: This means you're allowed to have help in making your decisions. 
•Capacity should be assumed and is decision specific: This means that a person is assumed to be competent no matter what the circumstance. 
•Decision making is a skill we learn: Decision making is something we practice to get better at. So, when we have large decisions we are able to decide easier. 

People have the right to:

• Learn from experience
• Change their minds
• Make decisions others might not agree with

Sample Decision-Making Agreements can be found here: 
Decision-Making Agreement 1
Decision-Making Agreement 2
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​Charting the LifeCourse provides a decision making portfolio. It can be found here: 
LifeCourse Decision-Making Portfolio  
​Charting the LifeCourse also provides an assessment to figure out what supports are needed to make decisions in all areas of your life. It can be found here:
LifeCourse Decision-Making Assessment

​Sometimes when we have to make a decision it is helpful to make a pros and cons list. It's helps if you weigh the positives and negatives to each solution. It's best if you pick the best choice for you. It also helps if you don't put off or procrastinate in making the decision. A decision-making worksheet can be found below:
Decision-Making Worksheet

I was inspired to write this blog after seeing a post on Instagram (@the.autisticats) about minimum wage and people with disabilities. 

There's has been lots of conversation around raising minimum wage to $15/ hour. It is still 100% legal for people with disabilities to be paid less than $1/hour. An article written by NPR highlights this problem, "Since 1938, U.S. labor law has carved out a rule for some people with disabilities, saying they can be paid less than minimum wage. The New Deal-era law was intended to encourage employment of more people." The article goes on to state, "This call by a top federal civil rights watchdog is a major milestone in the difficult history of so-called sheltered workshops and other "subminimum-wage" employers. They pay tens of thousands of people with disabilities an average wage of $3.34 a hour, the report says, for tasks like bagging newspapers, shredding papers by hand or wrapping silverware in napkins. They calculate wages by regularly timing how long it takes each worker to complete their task and comparing that productivity to an experienced worker without disabilities." People with disabilities working in these "sheltered workshops" or "work centers" are segregated workplaces. They exist to only employ people with disabilities. In America, people with disabilities are required when receiving government services to have a job or be in a day program. It makes no logical reason for subminimum wage to be in effect. I know the Biden administration has plans to eliminate "subminimum wage" and I hope they follow through with this plan. 
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As for myself, I'm not in a day program or work in a sheltered workshops. I'm able to get a job and maintain it. I'm able to maintain my job because of the supports I have in place. I do make more than minimum wage, but that excludes me from other government services like Supplemental Security Income or Social Security Disability Income. The only program I qualify for is Medicaid. I don't make enough money to live on my own. My journey to be able to make enough money on my own is longer than my neurotypical peers. I'm just a single story; I'm sure there are many others who have similar stories. 

Sources: 
https://www.npr.org/2020/09/17/912840482/u-s-agency-urges-end-to-below-minimum-wage-for-workers-with-disabilities 

​This blog post is different from what I normally post. This is just a free form write up on how having multiple disabilities affects my life. 

Having a disability means fighting everyday to prove why you’re worthy of receiving services.

Having a disability means fighting insurance, social security, and medicaid to prove why you need services.

Having a disability means having to explain what it is, what it means to you, and how it affects your life.

Having a disability is answering the same questions over and over again.

Having a disability means I may get judged just for having autism.

Having a disability means I have to protect my health especially in the season of COVID-19. 

Having a disability is deciding whether or not to disclose your disability to a friend or not.

Having a disability is deciding whether or not to disclose a disability on a job interview.

Having a disability is deciding when I need to mask my autism and when I don't.

Having a disability means when I mask my autism I pay for it later. 

Having a disability means the employer can decide to pay me less or to not interview me at all based on my application.

Having a disability is worry about if I’ll secure housing when I’m older.

Having a disability is worrying about if I’ll be able to provide for myself when I’m older.

Having a disability means having an ABLE account.

Having a disability means signing over power of attorney at age 18.

Having a disability means my parents have to sit in on IEP meetings through kindergarten to twelfth grade.

Having a disability specifically autism is having scripted language so you don’t stumble on words when I speak.

Having a disability specifically autism means I prefer to have text communication over spoken communication.

Having a disability specifically autism means social communication is exhausting for me.

Having a disability specifically autism means having backup communication like text to speech in case of a meltdown or medical emergency where I’m unable to speak.

Having a disability means I’m unable to drive long distances.

Having a disability means time flies by or it goes super slow.
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Having a disability means I be hyperfocused on a task for a long period of time.

This blog is also posted on Photography through Autism Blog.