Category Archives: Autistics

My Reflection from class in the Fall on ‘The Curious Incident of the Dog in the Nighttime’ by Mark Haddon

SPOILER alert: For anyone who has not read this book yet!

In Mark Haddon’s book “The Curious Incident of the Dog in the Night-time,” it made me think of the visual thinking I have. The character in the book, Christopher, has much anxiety, panic attacks, sensory issues, and visualizing his plans to be able to function in a society which does not accommodate Autistic people like him that much. It showed how very intelligent, but concrete Christopher was too, even with math and science. It was pretty accurate portrayal of what goes on in my mind with a few differences.

I find that there were similar traits to how I feel in society. The similar traits between Christopher and myself are that we try to adapt to a society with many multi-sensory experiences in the world. For example, when Christopher was traveling to London to be reunited with his mother, he was trying to compensate by trying many different relaxation techniques. One of which was counting to 50 breaths so he could stay calm. He also was vocalizing a lot on the subways in London which I do a lot when I am on the subways in New York City. Some people actually are staring at me, but then I turn to say hello to not be known as a freak to them.

Christopher was very compassionate for animals and much feeling for the dog that his father killed which is why his father bought him a dog at the end of the story. Although his parents split up, his parents had their own way of living with their Autistic son, Christopher. In order for both of his parents to accept him for he is, the mother split a part from his father by finding another man which eventually she broke up with. The father hid letters the mother sent grieving for Christopher’s forgiveness in the way she used to treat him. When Christopher lived with his father solely, the father didn’t embrace and accept his son for he is, and always tried to construct his son to pass as normal as much as possible. His father eventually celebrated him too.

It was only until after Christopher found out his father killed the dog, Wellington, and Christopher sought out to find his mother, that both parents accepted their son. Acceptance is a process and everyone has the chance to work out their issues with themselves to celebrate who they are and other people. When a child has a disability like autism, many parents don’t want to accept their child is Autistic, instead find a way to ‘fix’ them or make them ‘pass’, and not honoring the person their child is. Many parents look to organizations like Autism Speaks and Autism Science Foundation to fix their child to be like everyone else in order to ‘normalize’ their child. But, what is normal, anyway?

All throughout my childhood, I was always Autistic, but was never diagnosed until I was an adult. I was always very anxious to be around society, I didn’t like people touching me in a certain way, and still don’t. I also had many other sensory issues like not wanting to be around abrupt noises and I do stim either with my hands or my whole body.

Autistic people need routines, a sense of knowing what is going to happen, and repetitive thinking in our way of doing things. Sometimes being Autistic can be frustratingly stressful causing a panic attack when we are not knowing what to expect from a new situation or person. New situations and people can be anxiety provoking for Autistic people like Christopher or myself. However, autism is a developmental delay which means we can learn to be comfortable with things in time at different times of our life. It is what makes an Autistic person a human being too.

When I meet other Autistic people I feel happier than when meeting a person who is not Autistic because I am able to communicate in the language of autism with anyone on the spectrum. I believe Christopher from Haddon’s book would feel the same way. It does not mean I don’t like meeting Non-Autistic people too, but there is a different feeling when meeting other Autistic people. Everyone has their unique properties of being Human, but most importantly everyone has people they are most comfortable with.

When I attended Autreat the last 2 years that Jim Sinclair ran it, I really loved being able to Flapplaud with our hands instead of clapping. The first year I attended Autreat, I loved being able to use interaction badges to know when we wanted to communicate with each other. I also enjoyed working with the Autistic children at Autreat in 2013 where I ran the children’s program there because my friend who ran it became ill during Autreat.

Autistic people need to have the community we live in, to adapt to our needs and wants too. Police officers and other authority figures are becoming increasingly aware of what it’s like for an Autistic person in the community. For each culture in Humanity, we learn different things from different people. It does not matter what culture we belong in, whether it’s Autistic culture or Deaf Culture or any other culture in Humanity, we need to find a way to communicate and accept each other.

Haddon, M. (2007). The Curious Incident of the Dog in the Night-time. National Geographic Books.

HOLIDAY SPECIAL: A Presentation on Autistic Artifacts from my project partner and I in “Disability and Embodiment” Class

TRIGGER Warning for everyone: We had used artifacts that were a part of the medical and charity models of disability towards the end of the presentation. This was only to show that they are artifacts too even though we all disagree with them.

I hope everyone enjoys the presentation my project partner from class did with me. We worked really hard as capturing the highlights of the many positive aspects of Autistic culture and the social model of disability!!!

Hopefully I can finally start Graduate School for next year 😀 It would only help me even more!!!!

Flapplauding always and Please ENJOY your HOLIDAY Present from me to you!!!!!

OUT, J

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My Disability and Music paper from “Disability and Embodiment”

The song that was attached to a YouTube video a few years back was recently deleted, but intrigued me. The song tried to lift the barriers that the medical model of disability conveys. The song used was “Individuality” by the U.K. band, Area 7. Some thought provoking words were “The years go by, you find that nothing comes easily. And the world is full of people tryin’ take you down.” This really spoke to me personally as well as who I have interacted with in the disability community especially in the Autistic community. The song really helps us accept our own self since we need to have less self-doubt, less influence from others, and more of our own identity. This song is more about post-structuralist social model of disability because it does not speak about impairments rather about striving to be the best we can be.
To me, the song tries to convey something Jim Sinclair wrote about in his “Don’t Mourn for Us” speech when he wrote, “We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived…But don’t mourn for us.” (Sinclair pg. 9) I feel Jim Sinclair’s quote really compliments this song.
A paper by Steven Van Wolputte, explores several authors in his paper where he reports, “Or, as Mead (1974) notes: We cannot be ourselves unless we are also members…He pointed out that a self is a social structure and process that arises in and from social experience, that it involves the body, and the self – …” (Van Wolputte pg. 261) These words from the article and song reminded me how people like myself in the disability community feel today from non-disabled people in society. I have felt society needs to understand people in the disability community and people who seem different. We are members of society too who need to identify the way we want to be represented. Instead people typically don’t see how disabled people like myself can live full successful lives. We are always made to feel odd and different. These lyrics from the video, immediately made me feel this should be everybody’s anthem while going to school and growing up. In 2nd grade, I met with the school psychologist, who told my mom I would not be able to graduate high school, learn to be my own person, and live a fulfilling successful life.
In an article by Loja, Costa, Hughes, and Menezes, I further determine why the song is so powerful, “[Disabled individuals] confront physical and attitudinal barriers and stereotypes about their capacity for intimacy and configure themselves in ways that challenge centuries of oppression, refusing to internalize ableism, demanding recognition for who they are and what they want to become.” (Loja pg. 198) This empowers me to build my life even through the vast ableism I have faced in my life, and create who I am from all the struggles I have overcome as a part of society.
The song from a post-structuralist social model shows us what being an individual is; “not being so vain, not being so proud, but rising above,” (from Area 7) the intellectual standards society tells us what we can be, to be ourselves. Van Wolputte states, “It is therefore important to distinguish between, on the one hand, the self as an embodied process of self-making, of becoming (the body self), and on the other hand, the socially sanctioned self-image or representational Self.” (Van Wolputte pg. 262) People need to stop and think about the broader scope of humanity and how any one can be an individual.
Even though I didn’t know I was Autistic in 2nd grade, I did know I was disabled, which led me to feel society’s perception of the disabled. We need help and support to fight for our own individuality to build our confidence, and to fight back from society’s perception of disability.

Works Cited

Area 7 – Individuality Lyrics | MetroLyrics http://www.metrolyrics.com/individuality-lyrics-area-7.html

Sinclair, J. (1993). Don’t mourn for us. Our Voice. The newsletter of Autism Network International, 1(3).

Van Wolputte, S. (2004). Hang on to your self: Of bodies, embodiment, and selves. Annual Review of Anthropology, 251-269.

Loja, E., Costa, M. E., Hughes, B., & Menezes, I. (2013). Disability, embodiment and ableism: Stories of resistance. Disability & Society, 28(2), 190-203.

Individuality by Area 7

They always said that you would never be anything.
Everything you tried to do was just a waste of time.
But you believed you could do anything you wanted to.
You made your mind up and you never looked behind.

Don’t let them try to tell you how to live your life.
Don’t let them hold you back, don’t ever change your mind.

Individuality – Be proud of what you are
Individuality – Don’t let them cut you down
You can be whatever you want to be,
But don’t change yourself for society.
Don’t lose your Individuality.

The years go by, you find that nothing comes easily.
And the world is full of people tryin’ take you down.
Don’t ever turn your back on anything you’ve ever been.
You don’t need to prove yourself to anybody else.

There’s no room for second best, no second chance, don’t fail the test,
Gotta rise above the rest, gotta try to make your mark.
You don’t need to be so vain, no need to act so proud,
Follow the trends, don’t ever stand out from the crowd.

Do you really care what other people think about you?
Does it really matter what they do or what they say?
You’ve fought too hard to let them throw it all back in your face.
When their opinion never mattered anyway.

Know your Voice, Know your Identities, Know your supports, and Live a Self-Determined Life

An Open Letter to the many primary and secondary educators as well as the many professionals who try to create tokens to Autistic and other Disabled people who they don’t give proper education to own their identities and opinions,

It’s important to create a better way for the Autistic/Disabled children and adolescents of the future adults of the Disability community and the broader community in the world. It’s important as well to create a system where the adults in the Disability community today finally know their voice and their identities count too. People need to develop their own self without any one especially Non-Autistic/Non-Disabled people influencing them that they can’t do much in society. This leads to many of the children eventually living in group homes like many of the Autistic/Disabled adult peers who struggled with the teachers in the school system as well growing up without a chance to learn.

School is an important project for every child growing up. No one should be denied a proper education because many teachers don’t want to develop more patience and spend more time with their students to get them through 12 years of schooling and go to college. When I watch the amount of people entering into the caretaker world for Autistic/Disabled adults I noticed many of the Non-disabled people who work with them even some parents, don’t preserve self-determination. Sadly, I start realizing how the whole primary and secondary education system pretty much sucks in the United States. I am not just talking about the public schools, but the fact that these children are also going to Residential Treatment program schools as well that really are segregative and do suck!! It’s not even just the Disability community which is denied proper education, but many other cultures of people too who don’t get the education they need. This all leads to mental health issues and addiction.

Many educators seem to only care about the most gifted people who are usually non-Disabled or non-Autistic people to finish high school and go to college. It’s only if any student becomes a good advocate for themselves during public high school that they actually do succeed to lead their own life through college eventually earning a decent living. Instead many Autistic/Disabled people wind up going to Adult day hab centers and group homes because society gave up on them. It is a very sad situation that many of these educators and other professionals do not help my many young peers in the Autistic/Disability community to learn responsibility in order to live a self-determined life.

When these people eventually do go to group homes, day hab, and even work in sheltered workshops earning a dollar an hour in some cases, they are treated like children, and act out like children, always acting out negatively. They are considered to be ‘behavior problems’ in society because no one taught them any better about responsibilities while attending their school years from kindergarten through 12th grade. And yet, most of these people have sensory meltdowns too that were always misunderstood as tantrums instead.

Society graduated many of these people with a IEP diploma which just states that they attended school without earning grades. Moreover, these people are told to learn social skills in adult classes when these types of skills should have been taught in public elementary school with the Non-disabled students. Most of these people can’t read or do not even know what it means to understand what they read, to write an essay, to do simple math, to sign their name, or to even know how they want to represent themselves in society.

Our society created a system where Non-Autistic/Non-Disabled people will speak for many of them in the Disability community no matter what the situation entails including telling the world how they should be identified as. Many of these students in the Disability community are never given real choices because many people do not want them to be educated in school and earn a decent wage that can allow them to have independence too. Their education is pushed away from them while they are pushed to agency businesses to take care of them for the rest of their lives. Yes, many of us in the Disability community do need supports, and sometimes agencies help with these supports, but the supports should be given to us as an accommodation to live a self-determined life. We live in an Interdependent world, none of us are totally independent.

There are some people, but not many who’ve been considered lucky to not let this happen to them. However, luck was more of a determination to advocate for ourselves including some non-verbal self-advocates who fought for their rights for supports and independence. Many reached out and others continue to reach out to advocate against a system that society really pushes many Autistic and other Disabled people into: not having their own voice and identities. It’s important to always educate, teach self-advocacy, teach social skills, and teach that it’s okay to identify ourselves the way any one wants to throughout school and adulthood. Most importantly, it’s important to teach social skills in elementary school as well as teaching sexuality and gender identities to everyone no matter if the student is disabled or not. Society is so afraid of teaching any one who is not the so-called normal person in society.

We are all gifted, we can all live our life the way we want and need to, and we can all learn to be responsible self-determined adults with the supports we need along the way. Society needs to accommodate the Disability community with the many sensory and physical things that we need to be accommodated for so that we can live our life like any other person can. In the professional world, Social Workers read in their code of ethics about self-determination all the time, but many Social Workers do not practice this code of ethics unless it is to get a Autistic/Disabled person to obtain their benefits from society as a whole. Benefits are good and are needed for us including myself, but self-determination must always be preserved too. There needs to be balance between the benefits the Disability community receives or will receive, and self-determination.

When society sees a person like myself advocating for myself and working toward my goals of self-determination, they only want to create a token so that this person will speak like Non-Disabled people yet will still be considered Disabled by society. If society wants to really listen to the Disability community, they will need to allow us to speak our minds the way we feel and want to represent ourselves with our identities. It is unfair for the Disability community and most importantly it is an unfair education system for the many people who have been and are in the elementary and secondary school systems. It’s probably why bullying persists in our schools. Society needs to change. Society needs to create an education system where everyone has a chance to live a decent life and learn the responsibilities to live our lives eventually with wages that aren’t sub-minimum.

Don’t wait until they become adults because then it may already be too late! Please do all you can to educate everyone no matter who they are. We need to make the United States better than it is right now. For those educators who have begun this already, I say thank you to you, but help me create any teacher in every school to maintain any student to live their adult life with supports and self-determination.

A few people have tried to make me a token in the past, but it’s important to fight for our own voice to be heard not to be a token. I teach self-advocacy at a part time job, and will continue to teach these basic self-advocacy skills so everyone eventually will know their voice, their own opinions, and their own identities which will always be cherished.

Thank you for reading and hope everyone understands what I say!

OUT, J

The Importance of Being A Role Model for Others

Many people need role models to be able help facilitate and empower their life. A role model we seek out, helps us build who we are by giving us the opportunity to reach for our proudest moments. There are many things we look for in a role model. A role model needs to be a responsible person who knows who they are, how they want to be represented, knows how to take care of their own needs, and knows how to get what they want. It’s important for a role model to be able to set and enforce their boundaries for themselves whether it is a verbal, non-verbal, or a physical boundary we set for each other. It’s not good to have no boundaries because other people can easily take advantage of us.

By setting boundaries as I am learning to do every day, we balance between what we want the public to do for us and how we want to have privacy. Many people in society tend to overstep their boundaries to misrepresent others, and influence their peers about what they think we are or should be doing. Many people also talk about others without the presence of other people around without giving the other person a chance to respond. A good role model would respect boundaries, know the meaning of YES or NO, listen to other people’s preferences, being honest about their actions, be accommodating to others, and be compassionate. No one can dictate what the other person should or needs to do.

There is a way for everyone to interact in the world expressing their individuality. Some people say that not making eye contact and flapping in public is distracting to other people. There are many people who absolutely need to flap, rock, spin, etc because of the way they are with the environment around them. Although, people who can make eye contact and don’t stim, need to remember that it does not mean they aren’t or can’t be role models to others.

Being a role model is a challenge for many people and is a life long process. Not everyone is a role model everyone can look up to, but it’s important to try hard to be an important person in someone else’s life. Accommodating people is important with how we interact with the world and has importance in knowing that people care. By accommodating, we need to listen, I need to listen. I am learning every day to listen and accommodate other people. Life is a double helix of communication. I’m on one side, and the other person is on the other side while we are all attached to a line. We all represent different colors on the double helix representing our individual humanity.

Our first role model is our own parents. However, not everyone I have met consider their parents role models for them. Although the parents we are born from are who we seek to be our role models first. Parents are there to teach us about love. Love is important because if we don’t know what love is, then we become lost. There are 2 ways to love: by physical intimacy with a romantic partner or by showing compassion to the other person through embracing the other person’s life. We listen and help the person because we want to be a role model for that person to spread love. Loving a person is about showing them that we are there for them. That we care and we adore every aspect of who they are. We want to help guide them in to their life to be a role model and productive member of society. Sometimes people or organizations suggest things to others because the majority of people are doing what they suggest. We need to follow our path, our vision, and to be able to glide into our future. Sometimes it’s not the most traveled path where everyone goes, but it’s our path that matter for each person.

Respect individuality and love the person for who they are because some day they will pay it forward by teaching compassion, love, and honesty for what humanity is.

I am on the right path now and can’t wait to learn while just starting school!

OUT, J