Tag Archives: autism

A Wild Journey to Acceptance

Hi Everyone,

(TRIGGER WARNING: There is noted talk of mental health crisis in this post)

I know it has been a while since I posted on this blog. It has been a long time because I am finishing my Master of Arts in Disability Studies at CUNY School of Professional Studies this Spring Semester 2019. I also turn 40 years old this year. I have been through a lot since 1997 to 2018. From that whole time which is a 20 year lifespan, I made a lot of stupid mistakes in my life, was very naive, and even went through 2 psychiatrists during that time. The first psychiatrist during that time of the first 8 years was a complete mess and utter disaster which caused the beginning of a living nightmare for me.

During the second half the 20 year lifespan, was seeing a different psychiatrist to try to stop the living nightmare from occurring. The living nightmare continued unfortunately until very recently in October 2018, when it started to subside and ease more and more. Now, I have to clean up everything that happened from 1997 when I first started my undergraduate schooling to October 2018 and take responsibility for everything. The best thing I can say will help me through this process is finishing my capstone to complete my Master of Arts degree in Disability Studies.

One of the things I learned in graduate school at CUNY is that I learned the process of coming up with my own ideas and learned that I don’t have agree with everyone while certainly I don’t even have to disagree with everyone either. I just have to come up with my own ideas and add to the discussions that are already happening. I also learned what I want to do with Disability studies. A strength is to use my knowledge and passion in Disability studies to use media like film to create media for the public to understand the message. I even made my first movie in 2017 when taking a noncredit class at School for Visual Arts in digital filmmaking. I met a friend from School for Visual Arts who is an actor to help me film it. It is on YouTube and this past summer I went to Joey Travolta’s Film Camp in New Jersey where I met someone to help me caption the film. I also do other things too with the paintings I make and the poetry I write as well.

Yet, I also have to learn from all the mistakes I made from 1997 to 2018 as well and there were too many of them. From being too adamant about choosing an undergraduate major as a Freshmen right out of high school to being too ashamed to admit a medication that is used for OCD caused me to be suicidal in Spring 1998. I told medical professionals I was hallucinating because I was too naive and thought telling that sounded better.

I actually did The Moth at the JCC Manhattan for the 2014 Reel Abilities telling my story in less than 5 minutes about my path to autism acceptance starting off with the experience from Spring 1998. It didn’t make it past the dress rehearsal. However, The Moth and the other participants, thought I should have done the final performance telling my story. However, it was the decision of Reel Abilities to choose who they wanted for the final performance. Everyone else loved my story. So, they never chose my story.

Anyway, from Spring 1998 to October 2018, I started on a whole lot of medications that literally distorted my thinking and created a living nightmare. When I finally left the first psychiatrist who started this, I saw a new psychiatrist in 2005 to this present day who wanted to change my medication all that time. This new psychiatrist confirmed what I know now that I am Autistic. However, it took him until October 2018 to change my medication to a different class of medication when the living nightmare finally came to an end.

One can only imagine all the stupidity and mistakes that occurred from 1997 to 2018. However, one can also know the positive things that happened too. I also learned recently since October 2018, sometimes when people see positive changes in the person who starts to feel good about themselves, those people don’t like it especially when they see the person who feels more positive no longer gives their power away. Hence, we then learn who really cares.

Many of the things I did in that 20 year lifespan, I wish I could take back and change, but I can’t. Instead I have to move forward with my life experiences from those 20 years taking the good with the bad. Every experience I had was a learning experience and it was the path I needed to go through whether I like it or not. Whatever experiences I will have in the future from this day moving forward, I will be ready for gaining the wisdom from those past 20 years and never go back to rehash any of those past experiences. They were just experiences I needed to go through to get to the present day.

As I move forward, I have to say that my experiences in graduate school has given me the opportunity to grow tremendously. I even did an unpaid internship as an elective during Spring 2018 for the New York City Mayor’s Office for People with Disabilities (MOPD). I learned so much from the Commissioner of the MOPD, Victor Calise and his whole staff. From that internship, I impressed so many people.

When I put the internship on my LinkedIn account after the semester was over, a connection I had for like 10 years or so, saw it, and emailed me to interview with him. The workplace was very close to where I live and is at the local independent living center. I interviewed with this independent living center and now I am working part time there while I finish my Masters degree. My last semester in graduate school I will be busy doing a lot of reflecting and creating the project I want to do for my capstone. When I graduate this May to receive my Masters degree, I will remember that it will be something I earned and will be proud of that I finally did something for myself without any influences from anyone else. As a professor once told me too, no one can take that away from me.

I will also remember where I came from during the 20 year lifespan that wound up being a living nightmare for not only myself, but my family too. I just need to remember it was the past, and now I can move forward. As I move forward, I can only remember how much I wanted to start graduate school, but couldn’t start right away. So, I took an undergraduate disability studies course at CUNY that the professor teaching it was very impressed with me, and helped me to start my graduate program by writing a recommendation for me to become a Kennedy Fellow for my first semester in graduate school. I can also remember something my professors told me during my first graduate semester at CUNY, to always think broadly and it is okay not to be perfect. I will always remember that. Now, I am a Kennedy Fellow once again as I finish up this degree.

It has been a long journey to get to this point with the new medication and I feel happy.

J

A Poem Called “No Regrets”

No Regrets,

by theamazinJ

Every experience we had,
every experience we have,
is neither bad nor worse,
every experience I had happened for a reason,
every experience I have I experience to grow,
no matter what anyone says or thinks
does not matter,
I grow from every experience everyday.
I grow because it helps me,
I grow because I am human,
and I grow to reach higher ground.
Some may not understand
especially since I am a disabled person,
since I have multiple disabilities
mainly invisible,
yet, everyone still knows I am human growing everyday.
Seeking support in different ways than I have,
ultimately making my decisions on my own,
because I have a mind of my own,
and every time I make a decision
it is always about how I feel at the time,
it’s always about what I need at the time,
and it’s always something I needed to grow from.
I have no regrets, and no body should,
even if we leave for a while
to do something we need to do for ourselves,
to do something that we feel we need to grow more,
to learn from to understand more about ourselves,
even if many others do not understand why,
even when others don’t understand what’s going on,
whether a disabled person or someone who is non-disabled
sets out on their own,
everyone needs their time for solace,
everyone needs to their time to listen to the inner voice,
everyone needs time sometimes to just do something,
because the time we have is all we’ve got,
the time we always had is all that we need to enhance ourselves.
As an Autistic disabled person who,
is disabled by default from a society who
does not understand the disability of autism,
and even invented and created the words.
Growth happens no matter what,
some may resist others’ growth,
some may say some disabled people cannot grow,
some may say having disability does not mean a person can grow,
some may say having disability is tragic sad thing,
some may say having disability means learning from those who are non-disabled,
some may not think of the implications of what they think
because it is overlooked,
instead therapies like ABA and social skills training
is generally mostly used rather than remotely used for specific ideals,
for specific impairments early on in life.
Sometimes we grow from each other,
but sometimes we need to grow by ourselves.
Others may be upset, crying, and angry,
about what the individual chose and what they wanted to
and how to grow from,
whatever the individual chose is self-determination and the social model,
regardless, and growing is an experience,
and there are no regrets from me,
and there should not be any regrets from anyone’s experiences
regardless of being autistic or not,
and no one should feel bad about any choice or experience they had.
In the end, it’s all about being self-aware,
it’s all about what we kinds of supports we need at the time,
and it’s all about having our intuition
to know ourselves,
and sometimes the support is just giving space,
understanding the boundary we set
to eventually come back a better person.
There is no regrets.

10 ways Non-autistic people tell Autistic people to Pass For Normal is Stigmatizing and Does Not Allow For Authenticity

1) When an Autistic person is told to pass for normal, we are usually told AAC is not allowed to communicate with others. The people we interact with tell us that we must speak through our mouths.
2) When an Autistic person moves differently through ticks and stimming and the way we walk down the street, we are told that we must not do that and in fact must ‘Quiet Hands’.
3) When an Autistic person desires to be by themselves, non-autistic people think it’s weird, unusual, and/or strange making us look like freaks and weirdos.
4) When an Autistic person fulfills a dream of a painting, writing, music, inventions, or other special interests so the world can enjoy something from us, we are often told we are obsessing over things and to enjoy life without thinking.
5) When an Autistic person wants to spend time with animals more than people, we are told to spend more time with people.
6) When an Autistic person prefers to hang out with other Autistics because we feel less pressure to pass we are often told our Autistic friends are too weird.
7) When an Autistic person interacts with non-autistic people, we are told we lack the social skills necessary to interact with them. However, we are often not taught the real social skills (check out the REAL social skills) and often are only taught social skills from a child-like or very basic thing.
8) When an Autistic person is advocating for themselves and the Autistic community, we are often told we are being rebellious, obstinate, or misbehaving.
9) When an Autistic person uses their voice to speak, we are often told to lower our voices or raise our voices. We are never encouraged to use AAC (Augmentative and Assistive Communication devices) unless a non-autistic person truly has trouble understanding the Autistic person. Then, the non-autistic person typically mocks or mimics the Autistic person who uses AAC.
10) All too often Autistic people are mocked or mimicked for being Autistic and used as the ‘joke’ or for ‘comedy’.

By these Non-autistic ways toward Autistic people, we are far too often not allowed to be our authentic selves. Autism is a different way of life, it is a different dialect, different language, different way to move, and different sensory experience. Every Autistic person expresses autism differently. That is the beauty of Autistic culture.

Believe it and hopefully those non-autistic people stop making Autistic people feel too anxious to ‘pass’ for a normal that is too stigmatizing from the medical model. Thus, we are far too often stereotyped as well and for those Autistic people who do try to conform to the normal way from society are far too often objectified or seen as ‘posters of inspiration porn’.

AAC is important to me for communicate like any other Autistic person, but like many others like myself have always been told to ‘pass’ instead.

OUT, J

Struggling to Communicate with People my Whole Life

Communication is key!!

However, I have been struggling to communicate with people my whole life from speech difficulties, being Autistic (not being a mainstream general person), and living my life as a person who cannot understand the jargon most people including my family tries to convey to me. This is when self-advocacy becomes important especially when I need my space too, understanding other people’s words spoken to me, and knowing when to communicate with or without my mouth.

Communication is key!!

But, my communication style has always been a struggle for others to understand. I do have echolalia, I do have multi-sensory issues, I do stim, I do think visually, and I love listening to people through music and I do love to dance like my papa Dave did!

Communication is key!!

Struggling to communicate is improper with people who struggle because everyone needs to interact and speak in a standard way through vocalizing thoughts through the mouth from mainstream society.

What can we do? What are we able to communicate to others when there is a disconnect especially with families and their Autistic children and siblings?

Connection is good, however when there is too much disconnect between families and their Autistic children or siblings, there needs to be a meeting point of each other to meet half way. By meeting halfway, we need to communicate by seeing each other at the right distance without seeing too far or too close. This is a problem for all families of Disabled people and Disabled people themselves.

Communication is key and the social model is much better when the medical model has caused so much pain and stigma!!

When can communication become the right when all of us who need to connect with each other? When can we understand and accept each other regardless???

Language is individualized for each person. Self-determination is important for everyone while the importance of connection continues through learning from each other, learning on our own, and not being dependent on the system being medical model or stigmatizations society give us.

This is all the things to think about as when we need acceptance and understanding during the month of April for Autism Acceptance Month.

Remember communication is a two way street of understanding each other without getting too stressed, too angry, too overreaction, or too hurt from pain causing other’s too much pain too. I have felt pain in my past, but now it’s time to move forward and be happy as I remember the very need to maintain myself to continue to be positive!

Love my family, love all my friends, love all my support network, and love the world.

Thank you all!!!

Communication is KEY!!!

Doing well in graduate school!!!!

OUT, J

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.