Category Archives: editorials

Supporting the Decisions Everyone Makes No Matter What Varying Impairments Anyone May Have including Autistic people

Supporting the Decisions for Everyone No Matter What Varying Impairments Anyone May Have Including Autistic People

Autistic people have rights just the way everyone has rights to be a leader of their life; Autistic people are thinking the way they want to think and are also human beings too with our own mind. Autistic people have feelings often feeling for others and have feelings that often feel pain by many other people who do not understand us. Autistic people grow up at different paces while others may just grow at the same pace as their physical age. Because many Autistic people grow at different paces, we are often thought of as less than human, deviant from the norm, and due to our impairments many in society look down upon us thinking we do not have a mind of our own nor are we able to make logical decisions about the life we want.

Though, Autistic people are vulnerable, and depending on the impairments, depend on how vulnerable the individual will be. It does not matter if the person is less impaired, they can be more vulnerable. Just because Autistic people are vulnerable does not mean we are not our own person. May be so many think that way because Autistic people feel so many emotions at once, that at times we either do not know how to use our emotions scaling back inward or use our emotions too much being considered to be over-emotional, rageful, and illogical. Whichever way Autistic people are, we are misunderstood by society as a whole, thus society is misguided in the way everyone should think of Autistic culture and human society in general.

Despite all of the misunderstandings and misguided ideas from years of a perception that someone with cognitive impairments is not capable, some in society are finally learning today what person centered really means. Yet, many do not presume competence. The tragedy of the thinking that Autistic people don’t have a mind capable like others has created in the past, a blood boiling battle scene between Autistic people and many others who striving for a way of conformity. Lately, the people who get the most credit for starting this battle scene is the organization, Autism Speaks. However, they are not the only ones who need to take responsibility for this battle scene between Autistic and non-autistic.

Many people before Autism Speaks have contributed to this blood boiling war between Autistic people and others who strive for perfection. Unfortunately, the mainstream media has contributed to this as well by mostly taking the sides of people who are against Autistic culture. This war against Autistic people is really a war against humanity and human nature, yet it should not have polarized thinking. The battle to fight for either correcting the genome from disability to embracing the genome and realizing cognitive disabilities like the way Autistic culture is, is something that needs to be accepted.

How far do we go to changing the human genome? Is it our right to change the genome that mutates and changes randomly over time? Who gets to say which parts of the genome are bad or not? And, is the human genome really a bad thing as many medical researchers are trying to correct it to make a perfected flawless human being? Is eugenics or genetic counseling really needed?

My feelings as a person who is Neurodivergent from outside the norms of society and as an Autistic person leads me to believe that I often feel like pushing to be who I am while getting pull back from society to make me the same as how others are. The fine line between autonomy and being who we are versus depending on others to conform to the standards of society is enormously thick, yet we need to pull one way and push another to be included in the community. Autism Speaks as an organization has been through a rough war because many people feel their misguided thinking for almost 12 years has been too hurtful to many who feel they want to embrace who they are regardless. This makes me feel that not just Autism Speaks, but everyone needs to re-think what we have done in the past that preyed on too many people and in some ways continue to do so.

Our society created the mindset of the perfect mind and body back when Francis Galton created the word ‘eugenics’ and the world decided that between Darwin’s evolutionary theory and his cousin, Galton and his creation of the word ‘eugenics’, that everyone became instantly obsessed with the human genome. To perfect the body and mind is to deny disability and separate from the imperfect human body to create a monster master race of the human genome that everyone will strive to be. This monster master race that everyone has been striving for since the late 19th Century, created the thinking that Hitler wanted to first exterminate people with varying degrees of impairments to eventually exterminating certain races, religions, and other peoples in the Holocaust because he thought society could do away without these differences.

I am sorry to say, but the world created the way Hitler eventually started the Holocaust when he thought about how to perfect the human genome, race, and religion and whether we like it or not. We create people like the way Hitler was in the world. However, this is not the only thing we need to take responsibility for, we also need to take responsibility for many other things throughout history both in our private lives and in the public.

Everyone is vulnerable in society, but we need to use that in a different way then the way we have been being vulnerable in the past. Supporting decisions that individuals make in the world is figuring out what will affect both the individual and society in a positive way. It is not about conforming to others, it is about being a leader of your own life. We just need to be vulnerable in the way we affect others and ourselves in the decisions we make in our life.

Much of society has been vulnerable to perfect a human genome that is constantly mutating, constantly changing, and constantly moving around in our bodies just like the universe is constantly moving. We can possibly change that, but we cannot stop that. Many people are obsessed with perfecting (and perfected) bodies and minds. However, perfecting a body and mind, is a very fine line between what we think is autonomy and what we think we need to depend on others for help. As society builds communities, we are connected to each other regardless of the way we identify through race, religion, sexuality, gender, or disability cultures. The way we represent ourselves is independent of being human because being human really means that we need to support one another regardless of what we want to influence since we all go through the same trials, tribulations, and rewards in life to form our identities and ideas.

Supporting decisions and the way we as individuals experience life is important. The person centered approach most are beginning to learn now, is something that is a part of human nature since the beginning of time. Yet, we have in the past, and in some ways still do, only respect the decisions some people make, while others we felt could not make decisions at all and could not think on their own. This is still is still happening today.

We need to give everyone the tools to decide and think about what they want in their life on their own even if it can be difficult with some individuals. This thinking presumed (and in some ways continues to presume) many people that their decisions are illogical and not right. Making decisions for our life depends on what kinds of decisions we are making. Some decisions we can decide on our own, but many other decisions we need the support from people we feel can assist us especially those close to us in making the best decision for making our life a success. There is always someone we can speak to that can help weigh the pros and cons of a decision in our life. For those who have more severe impairments, we need to help them as well to make their own decisions that are right for them regarding what the individual wants.

Whenever anyone makes a decision, it not only affects us, but it also affects everyone close to us in that decision, and in some ways can affect the rest of society as well. For example, when any one decides that they want to change the way their child is, they are making a conscious decision that will affect the way their child will feel about themselves and toward others as well. These decisions we make affect us individually in many different ways. If a child rebels against their parent’s decision to change who they are, then the child and the parents must take responsibility for their actions.

Deciding on changing the way a person is, also changes the way everyone feels about themselves. It is important to attribute every decision we make to the way we think about others and ourselves in our life. When we think about who we are as a person, we think about where we came from, and the people in our life that affect what we think. Sometimes what we think can hurt who we are and/or other people especially those close to us.

Though, the way we think depends on our experiences. For example, if we spitefully act because we think we want to hurt someone emotionally or physically, we essentially hurt ourselves in the process. The golden rule still stands to do good to others always, however, sometimes what we think is doing good in our mind, may be hurting others without even thinking it through. This is definitely true when Galton created eugenics that eventually became the study of genetics that led to the thoughts many people have had since then that has hurt society.

Autism Speaks may not have been thinking through in the past how they are helping Autistic people in society may not be actually helping Autistics everywhere, but they hopefully are starting to learn. However, every non-profit organization has been thinking irrationally including the Autistic Self-Advocacy Network and many other Self-Advocacy organizations that also seem to not think about the way everyone feels. Yet, the self-advocacy and the Neurodiversity movements that were started by self-advocates helped (and continues to help) the parent movement begin to understand things every day.

Every organization has their own agenda to what they think they are doing is right. Yet, everyone and every organization, through medical charity or self-advocacy, cannot know exactly how everyone feels because we all have our own thoughts and experiences, that are different than others and ourselves.
When thinking about supported decision-making, everyone thinks about the way they want to live their life. For example, an individual may choose a different way of living than many other people do on an actual daily basis, but that does not mean that individuals in society cannot live a quality life. A quality life is subjective to what an individual actually feels they want in their life. No one can suggest a better quality of life or social skills to make others conform to a society that is not universally designed for everyone. We need to accept and protect the boundaries we individually make ourselves to the way others set their boundaries too. We need to remember who the person is as an individual and how individuality really is what everyone wants as a single mind of their own.

Society can lead to too much frustration because of a social construction of conformity to make everyone the same, as followers. Some may be more frustrated with who they are than others because their experiences with how society treated them or certain individuals who treated them in the past made them feel particularly unjustified and unaccepted living their life. This responsibility is what everyone needs to fully grasp and think about how to create a unified world with justice served.

Everyone has their own way of living. Everyone has their pride and joy that makes them feel good about who they are. Everyone does what is right for them, but no one has a right to tell a person that the way they are living is not quality of life and not conforming. Conforming is living in a world that is universally designed to fit everyone even if society does not understand that type of conformity. Many times some impairments create situations that make a person feel they cannot function enough and in fact need accessibility and universal design to help them get by or even thrive in society. So, why cannot we create universal design in everything we do in society so that everyone feels that they can live their life the way they know best? That is a good question because our society has always conformed to the idea that its citizens are too vulnerable and need to be corrected (or fixed) to fit in.

The world is a tough place to live in. Autistic people can be vulnerable, mostly, everyone is different to the person standing next to them, and simultaneously we can all be vulnerable to what others are thinking. However, it does not mean as individuals that vulnerability is a weakness. Everyone is an individual who can think on their own and are susceptible to others in the way many think.

Human culture is defined; all of us think whoever is standing out in that moment yelling their voice the loudest and often ranting a lot, is the leader. This is not true, we are all leaders of our own life, and self-directing, as we all need to believe that we are happy with who we are and connecting with others. The vulnerability everyone has is just a strength we have that we need to show others that we need support. So, we all get to support the decisions we all make in the best possible life we all want, including Autistic people.

In order to think through how to create more positive experiences with others in society, we can help by providing to strive for universally designing a world that everyone can live in with dignity, respect, getting their voices heard, and able to function with everyone else around them no matter what. Everyone can lead their own life whatever way they want to live. We need to do better and we need to ease the pains of so many people especially in our society, including Autistic and non-autistic alike.

A Letter I wrote to the Editors of a New York Metro Parents Magazine about the Judge Rotenberg Center

To the editors of New York Metro Parents Magazine who published a half page advertisement of the Judge Rotenberg Center,

My name is Jason Ross and I am a member of the Board of Directors at the Community Alliance for Ethical Treatment of Youth (CAFETY) and a member of CAFETY-NY Chapter. Cafety works to increase awareness about residential programs that use coercive practices and operate under a philosophy that undermines the dignity of youth. I am writing to you because I was deeply concerned about an advertisement in your latest magazine showing a half page promotion for the Judge Rotenberg Center (JRC) in Canton, Massachusetts.

I am very concerned because JRC has been a place where people with disabilities are subjected to electrical shock as a means of pain-compliance as well as what we feel is unethical use of mechanical and chemical restraint and other harmful practices.

At Cafety, we know that the state-of-the-science in the treatment of behavioral disorders has moved beyond the archaic ‘facility-based’ approach that has been found to be so inherently coercive in nature. Instead, evidence based practices like Positive Behavior Intervention and Supports (PBIS) are becoming the set standard in most parts of the country and we support this trend. PBIS and other community based support programs allow youth with even the most ‘severe’ disabilities to live safely at home with their families where their parents can protect them from such disregard for personal dignity. It is vitally important for children and teenagers to feel included with the rest of their peers. A lot of the youth who end up admitted to JRC are nonverbal and have multi-sensory issues. Their growth and development requires quality support from the teachers, personal care staff and parents wrapped around them.

Also, personally, let me just add that there are some parents who submit to opinions and social pressure that says their children need to be “normal” in how they look, sound and behave. The out-of-touch congregate care facilities for youth like JRC that still do exist, feed into this feeling for the sake of keeping their institutions as full as possible. Instead of teaching parents to understand and embrace who their children are and helping them to find supports in the community, the professionals who work for the facilities convince them that confinement in the institution is the sole option for their children.
At Cafety, we believe it is only logical to point out that aversive, coercive and physically painful practices cause Post Traumatic Stress Disorder (PTSD) and many other physical and mental health issues later in life. They do not ‘treat’ a disorder, but instead make life worse for those who are subjected to them. Please support our mission to replace facilities like JRC with community based alternatives that really do help youth with disabilities to cope, adapt and succeed.

________________________________________________________________________________

I did not receive a response from the magazine, so I decided to post it on DMC. Hopefully, this letter will inform everyone about what Residential Treatment Placement centers do to the youth. Also, a phone call to the magazine may need to be done.


OUT, J

Why is Interdependence more important than Independence?

We urge each other to live happily ever after by doing what counts in our life. Some people listen to their instincts while others try to fight their emotions in an emotional outcry to live independently. We live in an interdependent world for a reason because very few people can fully live with no support. Some people need more support than others although we all need some kind of support to help get through the basic needs of survival. We are connected to each other all the time now through social networks we crave like Facebook, Twitter, Linkedin and many other internet sites to connect with. Some people are lonelier than others, but most importantly every one becomes lonely at some point during a day.  Some people who say being alone most of the time does not bother them have decided to give up on finding a connection with a person. In any case, people will find any connection they can follow like even a connection with an animal to know they are not alone.

Being who we are and who we AUT to be is part of our life, but we also need to feel connected to someone who gives us support. It starts with family and branches out to other people we can connect with who are similar to family contributing to our needs. However we need to feel some part of the day that we can do some things on our own. Its important to adapt to whatever we are working or doing at the moment to determine if we can do it on our own or needing some kind of support. These decisions can only be made when we can intuitively know what situation we are dealing with. Sometimes our physical bodies can inhibit us and sometimes our minds slow us down from stress. It does not matter who you are and what your place is in society whether you are Autistic or Neurotypical, we always need some kind of support system big or small.

People often say they want their independence, but the path to success does not lead to the totality of independence. We need a good support system to be dependent on too. Recently, The Autistic Self Advocacy Network sent out requests for an ACTION ALERT: What Does Community Mean To You? Let Medicaid Know!. Community is important because the community you choose becomes part of your support network included with your family. Medicaid needs to understand the basic human rights every one has including those people Medicaid serves. Every one deserves to live in communities inclusively together so that any one can succeed in society and learn from each other. It is important for every one to live together and support each other. There is no room for segregation in this world. Besides segregation just inhibits a community from really bonding and contributing to help each other learn how to function in society.   Looking back in History many different kinds of people were often segregated, but it always failed. So why does the government want to segregate a group of people who have disabilities? What is a disability anyway?  Well, I feel the Autistic Self-Advocacy Network has started the right conversation in beginning to end segregation.

Whoever you are and whatever you do in this society, you still need some kind of support to help you through daily living sometimes. No body can always do it on their own and we all need someone to get us through our mistakes and mishaps.

(Just a small post which I can expand on later, posting more soon, Autistic Artistic Carnival coming soon too!)

OUT, J

An email I sent to Obama and Biden to the Obama Info email address

This was an email I sent in response to Joe Biden sending me a chain email to everyone thanking people for continuing to support Mr. Obama and to introduce himself as Mr. Obama’s running mate.

I hope people like what I sent them in this email.  If you feel I need to add anything, please let me know and I will send another additional email.

have a great night, posting later on,

out, J

______________________________________________________________________

Hi,

No problem I hope the November elections will bring success to both you and Barack.

One of my many concerns is to make sure people on the Autism Spectrum like myself can achieve all the same things that many Neurotypicals are achieving as well.  I have seen Mr. Obama’s message on disabilities and the Autism Spectrum on Youtube.  I am very happy with the video.

As you may know individuals on the Autism Spectrum have the abilities to achieve anything that many Neurotypicals can achieve.

Autism and Asperger Syndrome has been around for centuries yet it has only been acknowledged by the DSM since 1994 slowly getting recognized by many doctors in the medical community.  As doctors begin to recognize this more and more, many people insist its an epidemic.  It is the awareness and education bringing this Autism Spectrum to the surface and continuing to come to the surface to more and more people which is why it is not an epidemic.

The positive perspective to look at Autism as a whole is to treat anybody on the Autism Spectrum with the same dignity and pride as anybody else would toward Neurotypical peers like yourself.   Neurodiversity is very important and probably the most important aspect in our society.  Individuals with Autism Spectrum Disorders have a neurological condition where many of the individuals do not have the right support programs to becoming a independent contributing member of society.  There are programs such as a program in New York City called Adaptations which created a support program for people with disabilities like the Autism Spectrum to help adults with disabilities become a contributing member of society and teaching social skills.

As you also may know the earlier the intervention of support programs and social skills the better the chance the child with Autism or Aspergers will develop in to a contributing member of society. The more you help these people like myself develop their one major skill or obsession on a particular topic to become a career, the better off we become.  Many people with Aspergers and Autism in the past have done so many great things with their abilities because they were lucky enough to have the support like myself.

There are many books and videos on youtube and even movies that are coming out soon like an Aspie Love Story coming out this fall where my aspie friends and I helped an actor portray a character with Asperger Syndrome the most authentic way he could by observing us and asking us questions.  I hope it wins big at the box office and the actor wins an Awards for it. I will be even more proud of myself.  If you have not seen the movie, Snowcake with Sigourney Weaver, you should see it.

I am a registered Echocardiographer and Registered Vascular Technologist in the field of Ultrasound from the ARDMS.   My other concern is the medical field. The government is trying to change the medical field a lot especially with the Deficit Reduction Act of 2007.  What will Barack and Joe do for the Medical field and its patients.  Many medical groups and hospitals like the medical group I work at are getting their labs accredited  from the ICAEL, ICAVL, and so on just to keep business going and to insure that the government knows quality care is going on.   I would like to know the stance that Barack and Joe are on with the field I am in.  How do you feel about the Deficit Reduction Act of 2007 and How do you both feel about the medical community as a whole?  I know many of my colleagues in the field that are fighting for certain things for the field for themselves or from societies they belong to.  I am an SVU (Society for Vascular Ultrasound) and an ASE (American Society for Echocardiography) member as well as a member of the ARDMS (American Registry for Diagnostic Medical Sonography).

As a person on the Autism Spectrum, you may think to yourself, “How can a person on the Autism Spectrum work especially in the Medical field?”  My answer to that is “I have the most tenacity than anyone has ever seen before and I will stop at nothing to get my special interest of Human Anatomy and medicine to become a career for myself which I did, yet I still have much to go.  I am only about 3 years working in the field and want to achieve much more by being able to live independently and own my own place.   I know I will get their soon especially since I know things must go slowly and I must be patient.  Like friends and families tell me, “I am like the Energizer Bunny, I keep going and going…”  I have inspired many of my friends and family members to be the same way, and without my inner strength and tenacity I don’t know where I’d be right now.  If I continue along, I will get there someday.

Please always continue to be an advocate for any individual on the Autism Spectrum to be a contributing member of society and never let anybody pull us down like the people who believe Spectrumites like myself need to be cured and were caused by Vaccines. We don’t need to be cured and we were not caused by Vaccines.  I feel they’re many people in this country who are very ignorant not just about people on the Autism Spectrum, but also about other people with disabilities and many other types of people.

I believe we are all individuals first before our labels and everyone should be treated as an individual person.

Watch this youtube video I found about how God created the Autistic Child:

here is the link:

http://www.youtube.com/watch?v=BZzcOlh6FoE&feature=related

It is very informative and direct.  It really tells a lot about people on the Autism Spectrum like myself.

I am also jewish and I hope we continue to support Israel.  I hope the Israelis and Palestinians can form a peaceful resolution where everybody over in Israel can live in harmony.  It will take a lot of work even for the whole Middle East especially with the Iraq War, but I feel someday it will happen.  People just need to be patient and live anywhere in the world with other people who are their neighbors.

Here is my philosophy on life:
Life is like climbing a big sand dune, we may slip and slide trying to climb up to the top.  We may hit big rocks to sit on and relax for a bit, but eventually we have to climb up to the top of the sand dune and say to ourselves we made it to the top.  Unfortunately, the sand dune we are all climbing is so tall that it takes a whole lifetime to reach the top.  Hopefully all of us can reach the top of the sand dune by the time we are old and grey sitting with our grandchildren or great grandchildren and say to ourselves, “I’ve made it through the tallest sandy sand dune and accomplished something so great…”

When I went to Israel over ten years ago, I felt a connection there so great and wonderful and would love it if it can stay that way.

Hope you have read this email and thought about some of these issues of life in the United States and around the world.  If both you and Joe have the confidence and the same tenacity as myself to accomplish some of these issues I mentioned and the rest of the issues throughout the United States and the World, then I will have the greatest confidence in you and Joe to be the ones to do the greatest good the world has ever seen.  I know it is a long journey to get there because you both have to win the election this November in order to do it.  If you win the election, you must be able to roll up those sleeves right away and get down to business.  Like many people say to me, “Actions speak louder than words.

Have a great week and enjoy the democratic national convention!

Good Luck and I am counting on the both of you.

Thank you for sending me the email,

Mr. Jason Ross, B.S., RDCS, RVT

PS I always tell myself and others ALWAYS stay humble and true to yourself!

_______________________________________________________________

I think may be I should also say that people on the Autism Spectrum need the support and encouragement so that spectrumites like myself do not fall through the cracks.  If we fall through the cracks, there are many people that would the better of us.  Our society will no longer have these kinds of special people like myself to interact with the special neurotypicals who want to love us and help us through this world.

Have a great week! I hope it was a wonderful letter to Mr. Obama like my friend who help read it through for me before I sent it.

out, J

Response to article about Heather from America’s Next Top Model in the NY TIMES

Is it good that Asperger Syndrome is getting a very public face these days?

I suppose so because if it didn’t people would still think other things about people who have the neurological condition like myself. They would not understand us aspies thinking that we are people that need to be institutionalized. The main idea is that people on the Autism spectrum like myself do not need to be institutionalized because we are great creatures from g-d just like the neurotypical people.

Our quarks may seem odd and eccentric, but I feel that neurotypical people are odd and eccentric as well in their own ways. They may know social cues better and make eye contact all the time, but there livlihood is not so much better than an Aspies livlihood. An aspies livlihood is to try and make just like anyone else in the world that is neurotypical. Most neurotypicals don’t understand. An aspie takes their life as it is now, like Heather Kuzmich and tries to transform it to be as accepting to others as they can be.

Most neurotypicals look at aspies behaviour like mine as standing out, odd, eccentric, or not motivating or trying to be like them. Yes there are times that I tend to get into the aspie mode and repeat words and phrases without thinking about it, pacing and rocking back and forth. Or better yet, get adamant about something that makes me not do the things I am supposed to do like organize my personal and business work, or frankly just draw pictures of anatomical hearts and blood vessels on paper regurgitating things I know about ultrasound so that I don’t get anxious.

Ultrasound is a good outlet for me to satisfy myself and not get so much anxiety that I start thinking about what I did wrong or what will I say to the next person I am about to talk to.

Conferences are expensive especially when George has his conference or when I go to an echo conference, that is why I want to create my own society where I can meet with people in the area and discuss things that will be beneficial to my special interest and not get anxious over anything that comes my way.

There is still a lot for me to prove to the world though since everyone’s whole existance is to prove something to the world especially for an aspie like me or even Heather who was on America’s Next Top Model.

I still have to prove to the world that I don’t have to feel anxious when I see a whole big mess and do one thing at time where eventually I will succeed. Success takes baby steps to get to and once you achieve the success, you have made it to the top of the sand dune and can say I did it.

I admire George, the man I interviewed because even though I think he is already successful he wants to succeed more.

Asperger Syndrome is a difference in lifestyle, but it doesn’t mean that it should impound anyone that has it, it just means that we must try harder than others to get where we are at. Life is a lot like respecting other people like George who is neurotypical and Aspies that want the same things as other people yet must try harder than other people to get where they want to be at.

If there were one thing in life I can have, but I don’t have it is to be a doctor with the greatest respect a man or woman can have. I know now that I can not have that for myself so I strive for the second best thing and that is being a Technologist.

To be a technologist is different than being a technician in that a technician just takes pictures and pushes buttons while a technologist thinks about what he is doing and analyzes what he is going to take a picture of. There are some people in this world that just take pictures without wondering what they are taking pictures of, while others take pictures knowing why they are taking a certain picture. They may be taking it for a specific reason to show the doctor progression of disease or on the other hand they may just want to emphasize the art in a particular scene when taking a picture or painting.

There are so many people that deserve the respect they must get because there are some people like George that should get the respect they deserve especially when they work hard at it. Respect is something that is earned not just given to you. So the next time you see someone who you know achieved something like George or an Aspie that is trying very hard to get where an NT (George) is at like me, instead of trampling over us, acknowledge us.

The article from the New YorkTimes today was very good and proved to the world how much people with Asperger Syndrome need to be acknowledged for our trial and errors to get where we want to be at.

By acknowledging people that are succeeding or trying their darndest to succeed, you are helping yourself and those that you are acknowledging. On this Chanukah season or for christians Christmas season, the eternal one will be happier to all that every one is at least respectful and loving of oneanother.

that’s what I had to say,

out, J

http://www.nytimes.com/2007/12/04/health/04well.html