Category Archives: Autistics

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

The Importance of living a Self-Determined Life

Self-determined language is very important for any one to know that any one can identify themselves the way any one feels comfortable with. Self-determination is also a way to be involved with our own life, our own feelings, our own conversations about us, and not involved with anything any one influences us about.

Emotional abuse can hurt a lot when people turn to us when saying or referring to our way of being as if we are not even human or we need to take medications to pass for a particular specific person’s individuality. This does not allow us to be our own individualistic self. Though, sometimes some people need to take medications regardless because of the ableism or emotional abuses affected by the way life immensely becomes too overwhelming. When this happens, any of us can become very anxious and seem disturbed since we are seen as being out of control. However, society creates this in individuals from the standards of a general normal that they want everyone to pass as.

We need to just live our life through the way of who we are, what we individually believe about who we are, and what we feel about our own life. This allows us to know that our life is what we want self-determinedly.

What we feel and what we do, is only a part of our being. When we move forward, we bring on not only what we want in our present situation, we bring on the past life we have lived too as a continuous spectrum of time and diversity in the human race.

We need to Remember our mission through what we are here for by what we can do for ourselves. The community needs to always remember the identities we all want for ourselves individually as part of self determination.

As an Autistic who also is very different from the general mainstream norm, society needs to understand that individuals are really individualistic as part of what makes us a part of the human race. The human race is exceptionally individualistic which is so diverse, so unique, so simple yet complex, so continuous though building on each other like legos, and everyone really is a spectrum of who everyone really can be. As an individual person, if we meet one human being we’ve have only met one human being.

While any one lives on this planet today, we can all think it’s hell or heaven depending on our experiences with our feelings while being involved with family, friends, and the broader world community. It depends on the feelings now that we feel before our body becomes too old; thinking of negative or positive feelings that determines our destiny. That’s what makes up heaven!

Everyone has their own spirit and their own feelings for our own space (or boundaries) to protect our own self of how we were first created in the world. This way, no one could ever feel like they can barge through who we are and our identity. The many things we built up for ourselves, makes up our own life in the world that we want to contribute to, to become the person we are destined to become.

Sometimes it takes a long time (as it did for me and for others) to think about the things we are destined for as we become way too influenced in our life to think of ourselves. Humanity is beautiful. It does not have to be too stressful, anxiety provoking, or even a way to pass for someone else’s normal. It’s who we are, what we want, and how we want to live it.

Self-determination is what builds our life now for even the future of our own
self-determination. It’s our own choice and no one else’s. We decide through our own spirituality of what makes us human, but ultimately what makes us a part of the universe.

If we make or give good, we get or receive good back!

Let’s make it a good life 😄

Love to my family, friends, and the broader world communities,


TheamazinJ

For June 18, 2015: 6th Annual Autistic Artistic Carnival is ready for submissions to be accepted starting April 1st for June 18th Online event on my blog!

Have no FEAR, have no ANGER, have no HATE…why????? Because the love of the Autistic Artistic Carnival is coming soon this JUNE…

theamazinj-autistic-carnival-2015

REMEMBER:::

It is for any Autistic person from all ages from all over the world to create or invent something they would like to share on the online June 18th event for Autistic Pride Day!!!!! YAY YAY YAY YAY!!!

Have no FEAR, have no ANGER, have no HATE…why????? Because the love of the Autistic Artistic Carnival is coming back once again for Autistic Pride Day June 18!!!! That means that this is the 6th annual ONLINE event!!!! remember it’s always for all ages for ALL Autistic people in this culture of Disability Culture.

It could be past Carnival participants, classmates of mine in graduate school, professors I have, any one else at CUNY SPS, Adaptations members at the JCC in Manhattan, an Autistic Self-Advocacy Network member, or any one with a good idea!!

The Online Carnival will be AMAZING!!!!! And BETTER than any other year that it was produced ever as we reach the 10th year annual where there will be a REAL in person CARNIVAL!!!!!!!

Thank you ALL and please be patient…

CALLING all Artists, Writers, Musicians, Film people, inventors, etc. come one, come all!!!!!

WE Autistic people in Autistic culture are just as great as the MAINSTREAM general society too 🙂

Hey, here is the banner I came up with on my own as I am feeling relaxed and focused on my tasks!!

Submissions will be accepted at autisticprideday@gmail.com and will be posted on June 18, 2015 for the Online event on this blog…

My opening remarks for the 2015 Day of Mourning Vigil in New City, NY

(The vigil will be held today at 3 pm at Rockland County Courthouse lawn, the link for the vigil facebook page is New City Vigil!!

2015 vigils flyer v2

This day is important to me as an Autistic and Disabled person. I have so many emotions from why I believe in this day of mourning vigil for my many peers in the disability community. I have a strong supportive network I built up my whole life between the family I was born into (though sometimes it seems they may not understand my own being Autistic or Disabled, but do love them), my friends I have made all throughout the years, some of you are here today, some of you or most of you are not.

My fight in me to advocate and change the world through my activism has been very slow, too slow at times, because there is a lot of work to be done to get the world to understand humanity, care for one another, and to relate to each other. I know I am not a perfect person, in fact, I am far from perfect, I have made many mistakes in my life due to the anxieties I felt through the years. It has made me learn what is more constructible to do and what I can do to make things better.

I am 35 years old now. So, I will probably continue to make mistakes, but hopefully not as impacting as I have done in the past which made me feel regret and despair for doing it. As we move forward in our lives, we need to remember those people in the disability community where their lives were not very supported, not very happy, and were often killed by the very same people who should have been supporting them all along, parents and caregivers.

Looking at my life, I am lucky that whatever I put into all my relationships, I put my all into them because I care so deeply. This has been a mistake sometimes because not everyone thinks like the way I think. I have been hurt in the past by people I put my all into that really either didn’t care about me or didn’t even want to connect to me at all.

I have been through a lot in my life dealing with this issue I have. Not being able to know that not everyone is going to want to feel what I feel and not everyone will care, and not everyone is supportive, can be frustrating to a person like myself.

As an Autistic person, I feel that it’s so important to know and find the people who will listen are from the supportive network I have now. I created this supportive network for myself from those who want to be in it and dismiss those who don’t want to be in it. I have known as well that whatever I put into the world, comes right back at me, that’s the way karma works. If I continue to bring good into the world, the world will be good to me. There are many people I met in the past whose karma gave me something negative. It’s time to give karma back in a good way to the supportive network I have built all along.

The people I have in my life who care a good deal have given me so much good for me. Everyone in my support network gives me good in a different way individually. I need to continue to forget about people I have in my life who gave me bad and made me feel bad.

Back in 2008, I was sitting in Starbucks in Grand Central when I came into contact with a woman of many bags and a heavy (mostly artistic) trench coat. She was sitting down next to the electrical outlet so I can charge my phone at that moment. My phone was about to run out of battery. She said I can use the outlet and leave my phone on the table. We began talking a lot. She seemed very nice. She started at some point mentioning the feelings she began to have as she was regaining her strength as a psychic.

This woman told me how I am, and began telling me things about me, that I didn’t even tell her about previously. The psychic at Grand Central, even knew that I have been struggling to find myself and my voice. She said that the career I was doing was nto quite exactly what I was intended, and that she felt I will be finding it soon, but not knowing when. She also told me how much of a an Artist I am, but have been denying this for much of my life. She told me how I do write, but art is my main talent.

She felt the career I chose at that moment (Ultrasound) was not really exactly for me. She felt I can do a lot more. Just before I hopped on the train to tarrytown, she ran over to me to say one last thing to me, She told me how I going to have a small, but minor surgery that year. By the end of the year, I did have surgery to remove a small cancerous tumor on my tail of my pancreas which also led me to have my spleen completely removed. I am left spleenless to this day.

Two years later, I had open heart surgery for an aneurysm and aortic valve repair too. This psychic even said to me that that was an arranged meeting with no payment. Ever since then, I started to wonder when I will see her again. She said that the next one will be an arranged reading that is longer and different. I have been realizing my spirituality a lot since then. The out of body experiences I have gotten, and other spiritual things as well I experience, have drawn me closer to the missions I need to fulfill.

My life has been turning around for the past few years. I have been impressing my support network on this transformation I made for myself. My life has really been much more than I have ever done, but I still have a lot more things to do to finalize the transformation. I am officially at the CUNY School of Professional Studies now for Disability Studies in graduate school. I was finally able to start the program after getting in last June. I am even a Kennedy Fellow.

I am pursuing my dreams to what I need to do for myself now. It’s been tough for my family because I need to be supported financially by them still. I only work part time for now, but need to travel to queens for the job. As an Autistic person, this can be a challenge for me. However, the job in itself is rewarding for me. I am a Self-Advocacy Liaison. I think about this song as I listen from the movie Footloose entitled Almost Paradise, by Mike Reno and Ann Wilson. This song really touches my heart and soul so much especially hearing these words:

“I feared my heart would beat in secrecy, I faced the nights alone, on, how I would have known, that’s all my life only I needed you.”

(as I think of these words from the song, I think about the need of how I want to be an ‘angel’ like how the psychic in 2008 said I would become to achieve my missions. She said something scary to me though, how I am going to live a long life into my 90’s. It was scary because at that moment I was in my late 20’s. I was scared because I knew I had a lot more to do, and back in 2008, I wasn’t even doing what I was supposed to be doing. I was though, doing things through volunteering and writing, but in the past, few years I began doing a lot more and continuing on this path working with my peers in the disability community to change the world.

It is why I started reaching out more to do these vigils for Disability rights organizations like the Autistic Self-Advocacy Network. Life can be tricky sometimes, it can be overwhelming, it can cause for anxiety, and it can be hurting. But, we need to know how to resolve the pain of the hurt, the overwhelming anxiety, and finding our moment of who we are to be happy. We are all good people, but we need to engage our dreams and reality to live and be who are no matter what. It’s something we all need to think about: what is normality? However, most importantly what is our own normal and allowing ourselves to be that normal.

Sometimes it can be anxiety ridden, when we don’t have our normal of what makes up a person a reality. It is why those who were supposed to be supporting them have killed many peers in the disability community. It is why we mourn even Garnett Spears who had this unfortunate thing happen to him by his own support, who his mother allegedly, who needed to support him. Life can be tricky as well when especially why many parent advocates who want their children to be whatever the parents want, is not making their children celebrate who they are. Many of you are probably thinking about this normal that Galton created years before with the Bell curve.

We need to remember normal is what people choose individually with what works for them. Otherwise the person may be influencing about what they think the other person needs to be. This is challenging for many to think about what is termed self-determination. By thinking about self-determination , the individual needs to decide for themselves what works best for them. If they choose medication, that becomes their choice, if they choose other ways instead that’s also their choice, and if they choose both methods, that is also the choice of any individual citizen of the world. Everyone chooses their own methods to maintain the normal way of being for them individually and we all learn what works best for us. This is self-determination to be able to get the individual to recognize the things that work for them. Medications are a personal choice, not a professionals or a parents choice to make.

Ed Roberts who is the father of the Disabiilty rights movement talked often in his speeches that led to the independent living movement. Wolfenberger often lectured about this too. It is why our society has begun to move in the right direction, although medicine has ben still influencing many parents and professionals to not enable individuals choices.

Parents and caregivers need to always remember to preserve love, understanding, and acceptance for everyone they are needing to take care of and love for life. Thank you and let’s remember these tragedies of the victims of these people with disabilities who were killed by parents and caregivers. Remember these word:

“Nothing about us, without us!!!!”

It will end with a poem I wrote:

Poem:

Love is Passion

I love, I care,
I urge you all
To do the same.
Give me a hug,
Give you a hug,
Give the people around you a hug,
But most importantly give yourself
A hug every day
Looking into the mirror to say to yourself:
“I love you! I will always love you and I will never stop loving you and will for the rest of my life”

Have been quite busy with Graduate school at CUNY School of Professional Studies for Disability studies!!

Sorry I haven’t posted in a while, but I will be posted soon the new BANNER for the Autistic Artistic Carnival 2015 on June 18 of this year for Drive Mom Crazy Blog’s 6th annual online event for Autistic Pride day!!!

OUT, J

A Reflection I wrote in the Fall on ‘The Importance of Inclusive Education’ and a few other things about Autism Acceptance

The article, “Islands of Loneliness:,” by Theoharis, et. al, the authors write about the importance of inclusive education for Autistic people like myself. I reflect how I agree with the authors. They interview several Self-Advocates on the autistic spectrum including Temple, Tito, Daniel Tammet, and others (there is also Carly Fleischmann as well). These people have different stories about what drives them for social interaction because if you met one Autistic person you’ve only met one Autistic person. Every one on the autistic spectrum is different. And as in beginning of the song by Freddie Jackson called “You are my Lady,” he sings “There’s something that I want to say, but words sometimes get in the way…” This song makes me think of how it is hard for Autistics many times to communicate the way so called ‘normal’ people speak.

Instead of reiterating what my Autistic peers have told you in this article which are valid too, I prefer to reflect on my own needs and wants for social interaction. As I discussed in my reflection on Mark Haddon’s book, I went to Autreat 2 years in a row. I am hoping to make it to another Autistic run event again futures to come. Although it is not called Autreat anymore and Jim Sinclair does not run the week long event anymore. One of the many retreats over the summer was created after Jim disbanded Autreat, called Association for Autistic Community conference or what some people call Autistic Con or as some friends will still try to call ‘Autreat’.

I say being Autistic is culture because there are many things that make up who we are. For example, stimming like flapping when we are happy, angry, sad, applauding, etc to express ourselves. Another part of Autistic culture is echolalia which means a person like myself repeats words or phrases without realizing it. It is very hard to be around Non-Autistic people especially those people without disabilities because they typically do not understand us. Sometimes I don’t get enough energy (or in Autistic culture we call enough spoons) to explain to Non-Autistic people what we are and how we like to interact. Though many people find because I have practiced passing as normal so many times, that there are Non-Disabled people who don’t really think of me being Autistic. However, I am and always will be!

Autistic people do socialize when we want to, we just need to be comfortable with the person we are about to socialize with. If someone is going to want to interact with us, then we need them to understand our own space so no one crosses into our boundaries either verbally or nonverbally. Everyone always talks about how Autistic people lack social skills, but there are many Non-Autistic people who lack social skills too. Social skills and boundaries should be taught in schools with everyone. The article talks about the importance of inclusive education among every student even those who are on the autistic spectrum and I truly believe that inclusive education helps. However, it’s not perfect since inclusive education needs to still ensure every one in the classroom including teachers respect one another.

I wanted to make sure I was mainstreamed by the time I reached Junior High School. Although since the education system wasn’t exactly accepting back when I was in secondary school, I was bullied not only by students, but by some teachers too. Society decided to create segregative schools and settings for Autistic people since we were different. They felt and still feel by segregating many of us, and teaching us to conform, we would learn to adapt to the current system. We were considered burdens to the current school system and to society, so they place many of my Autistic peers in segregative Residential school centers throughout the world today (like the Judge Rotenberg Center). This is not inclusive and does not provide us with the self-determined social interaction that many other Human cultures are given in school.

Educating people does not even mean placing students in private charter schools either where the students go home after a single school day. The current public primary and secondary school systems need to acknowledge the many ways a person interacts and communicates and learns with the world. Not being able to speak does not mean we don’t want interaction or communication, it just means we may use different ways to communicate our thoughts to others. For example, Henry Frost fought to be included in the public school system as a Non-verbal Autistic youth!

Loneliness is a problem in this world that society created, but we can solve it by understanding each other more. By understanding each other, we can read the many hundreds of blogs written by my Autistic peers telling our stories as more blogs are created too. The article stresses how many people on the autistic spectrum write about their autobiographical stories for others to read. Well, everyone needs to read them all whether published in books or personal blogs, and read each account as a way of understanding the differences so that society can understand and accept. Listen, read, learn, and understand Autistics who have their own way of just being and interacting.

______________________________________________________________________

Additions after the reflection I wrote:

There are many Autistic people who are Non-Verbal. It can be hard for parents of Autistic children to know that not every child is going to be the same wanting and reaching for the same goals as what many parents want for their children. Many parents want their children especially those who are Autistic, to think like the status quo and make a lot of money, and I understand why. Not everyone can be a CEO, a Director, a social butterfly, or even a Celebrity, and parents need to understand this. It’s okay for any one to be their own unique success story. Many parents of Autistic children want their children to be success stories not needing any support. Support is a necessary part of being Human because everyone needs some kind of connection all throughout their lives to feel a part of someone else. That’s why we have our families, so people can be supported. Independence is important, but everyone needs to remember the importance of Interdependence in humanity.

Please Read Lydia Brown’s “Privilege and the Myth of Independence” on her blog, Autistic Hoya!

Please also read Alyssa’s post on “Ableism is to Blame”

Please also read Kassiane’s post here ‘On Role Models’ from her blog from 2012.

There is also another retreat called Ocate Cliffs as well, run by Star Ford who runs Divergent Labs!

Here is a video I like to show people about what not to say to Autistic people.

Here is a video by Drew Morton Goldsmith a Non-verbal Autistic person who talks about the importance of Autistic Rights!

and, here is a video series called Ask an Autistic, Amythyst has a series of videos on ‘Ask an Autistic’ who vlogs different topics each week on her You Tube account, she also has a blog which she states on the videos. This is the first episode:

Any one who wants to see Citizen Autistic on Hulu can see it tomorrow and talk about it on a Twitter feed on Monday!

There is so many things every one needs to learn about that people generally don’t know or think about when people think about autism in general.

Causton-Theoharis, J., Ashby, C., & Cosier, M. (2009). Islands of loneliness: Exploring social interaction through the autobiographies of individuals with autism. Journal Information, 47(2).

_________________________________

Have a great week!!

OUT, J