Recently I was asked to write a statement to be read at the United Nations World Autism Awareness Day events taking place on April 2. This statement was read during a panel presentation on transition to adulthood for those with autism, and s my dream and painting about world peace shared with the audience. As Autism Awareness month comes to a close I would like to share my remarks with the wider audience that this blog affords. Enjoy.

Here is the statement:

People with autism need help transitioning to adulthood. Here are my top ten tips to help us:

1.    We all need more friends. We may look like we are not interested due to our lack of eye contact. It is hard for us to initiate friendships as well. this is due to motor differences or anxiety for many. Please don’t be afraid to reach out to us;y we really want love from others.
2.    We urgently need more practical training at high school and transition programs. Most importantly we need to learn life skills such as self-advocacy and how to make and keep friends.
3.    Truly we need society to be more accepting of our differences. Recognize the hardships we have trying to act neurotypical. We are not a threat to others and we have much to offer.
4.    Recognize our strengths. Try to help us find work or careers that need those strengths. We have the need to be useful.
5.    Seriously, we need jobs to earn money. Figuring out how we can do that is hard. Please help us recognize the marketable skills we may have. We don’t want to be dependent on others.
6.    Help us to find work and a place to live. I truly believe parents and the young person need more support and advice after a student leaves an educational system. It is really very confusing to try and get the information needed to get a job or find housing.
7.    Teach us the meaning of justly being in control of our emotions. Frankly we find it difficult because of the ‘flight or fright’ response that many of us have. Anxiety is hard to control.
8.    Realize the importance of community. Truly we need more people to connect with besides paid service providers and family members. It is hard to initiate contact for many of us.
9.    Teach us to be more responsible. We want to contribute to society. Please realize we need to be taught rights and responsibilities so we can be responsible.
10.    Kindly recognize we are talented. Please do not judge us by our nicely unorthodox behaviors.

Jeremy Sicile-Kira

Youth Representative for the Autism Research Institute

People with autism very much want to have fulfilling experiences, but it is difficult. One of the reasons for this difficulty is that our nervous system is very sensitive. We have challenges with sensory processing. Sensory processing is the ability of the brain to process and send signals to the nervous system, which turns the signals into appropriate motor and behavioral responses. Until I took a community college course about Intercultural Communications, I did not know about the concept of behavioral flexibility, which comes more naturally to neurotypicals (those without autism).

As explained in my book, A Full Life with Autism (Macmillan 2012) Behavioral flexibility is the ability to select an appropriate behavior to fit different communication contexts. It also refers to “environmental mobility” that requires a person to cope with different kinds of people in different types of circumstances. A person can select a method of communication from a host of options (ie selecting appropriate strategies). The way I see it, behavioral flexibility is the ability to switch our behaviors according to the settings we are in.

I think behavioral flexibility is an interesting term in both the neurotypical and the autism cultures. The difference is it comes a lot more naturally to neurotypicals because people with autism have a harder time understanding that flexibility.

Autistic people have many factors that stand in the way of being flexible with their behaviors due to sensory processing issues. People with autism are extremely sensitive to noise, lights and many times, touch. We also need direct instruction with regards to how we might behave in different environments. For example, I need to know what the rules of expected behavior are. When I was younger I learned the rules of going to the library. My nice tutors would give me the rules: “Touch books nicely and keep your hands to yourself and help put books in the red bin.” If I followed the rules I got to go for French fries after spending time with the books, if not, I had to immediately leave the library that I loved.

Neurotypicals have behavioral flexibility and adapt their behavior according to different factors such as: very small groups vs. large groups. Neurotypical people change their behavior depending on the social group such as whether they are in church or in a bar. The group of people you are with also changes your behavior. Being in Las Vegas with your family is different than being there with your male buddies.

I really don’t understand neurotypical flexibility because I am not one. For a person with autism like me, it is difficult to be flexible because my sensory system is behaviorally intensely feeling everything. We work hard at learning to moderate our responses and to become flexible; it does not come naturally to most of us on the spectrum.

Those of us with autism work hard to learn over time to self-regulate our responses to the everyday environment. As an example, here are five every day sensory experiences that are problematic for me but that I have learned to tolerate or adapt to:

1. Bright lights: My body feels very badly from bright lights: it just hurts. Very bright lights can make me need to leave a room.

2. Eye contact: I cannot process visually and auditorily at the same time, so I cannot give eye contact when listening to people. I choose the listening over the seeing, to understand what the person is saying.

3. Loud noises: My body doesn’t tolerate loud noises well. My top need is for an environment that is not noisy. For example, at Starbucks there are different noises, such as the coffee machines and people speaking at the same time that is painful for me.

4. Challenging smells: It is difficult because my nose is sensitive and smells everything. I cannot block out the unpleasant ones. The smell of objects and people is distracting and challenging. At Starbucks, I can smell the coffee and the nice perfume people are wearing. I can also smell the deodorant and hand cream on people and that is distracting. The bad smell of smoker’s fumes on their clothes is challenging.

5. Random touching: My body doesn’t like to be touched by random people. I need to prepare for people touching me because it can be very painful. If I know the person, usually I can prepare for their touch that I am used to. Strangers are difficult because I don’t know how their touch will feel.

The good news is that over time and with therapy we learn strategies to help us tolerate situations and environments, and we are able to participate in activities even with these sensory challenges. We learn also to give ourselves time to recuperate after having been exposed to too many environmental stressors.

Organizations such as the Autism Research Institute assist families in many ways, including in understanding how to help their children with sensory challenges such as using sensory integration therapy. The role of the therapist is to provide the child with sensory information which helps organize the central nervous system, to assist the child in inhibiting and/or modulating sensory information, and to assist the child in processing a more organized response to sensory stimuli. With such help, children can learn to have more behavioral flexibility, giving hope that they can have fulfilling experiences throughout their life.

Jeremy Sicile-Kira

Youth Representative for the Autism Research Institute

Thank you for following the NGO Voices blog and contributing your ideas as well as your feedback on matters of importance to our NGO community, raised by our many valued contributors. While trying to embrace the full scope of this year’s most critical issues, such as human rights, disabilities, peace and sustainability, we hope that this blog has provided you with new perspective on these issues, started conversations and motivated you to take action.

The NGO Relations Social Media Team will be taking a break beginning Monday, 24 December 2012 and will resume posting as of Monday, 7 January 2013. On behalf of the NGO Relations section, we would like to wish you and yours a happy holiday season and best wishes for the New Year. We look forward to make a difference together in 2013. Stay tuned!

My name is Janet Mason and I hail from Midwest,USA. I have worked as a journalist, a researcher and an international non-profit worker. While pursuing my first MA in International Studies at the University of Kansas, I visited the UN in Vienna. This experience stuck with me as I worked toward earning my second Masters in Public Administration from the University of Missouri-Kansas City. I felt that by interning at the UN I would receive an enriching life changing experience.

I have been serving as an Editorial intern in the Publications and Editorial (P&E) Cluster in the Outreach Division of the Department of Public Information at UN Headquarters. This great opportunity – to learn about the interworkings of the United Nations – combined with my broadcast journalism and nonprofit background, has resulted in sharpened editorial skills and has increased my motivation to promote the vital work of the UN.

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Throughout my education I have specialized in human rights and therefore continually find myself returning to the United Nations for resolutions, reports and publications. Before starting my internship in the Publications and Editorial Cluster [P&E Cluster,] in the Outreach Division of the UN Department of Public Information, I used UN publications almost daily while writing my thesis and completing my studies.

During the past three months, my work with the Yearbook of the United Nations has been highly motivating and rewarding, allowing me to hone my research and editorial skills, as well as learn about different UN agencies and activities. I also had the opportunity to volunteer to help out with media accreditation for the General Assembly, working with journalists and UN staff and security. 

Along with contributing to the human rights section of the next edition of the Yearbook, one of my main tasks has been to research content and edit information for the new UN Observances Calendar app for the iPhone. The app is based on the printed educational calendar The United Nations Making a Difference, first published by DPI in 2011. It illustrates the ways in which the United Nations tackles global challenges, including the achievements in the field of human rights. In a similar way to the Yearbook, the Calendar app incorporates large amounts of information, in an easy to use format; it is, however, easier to carry around!

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What do Human Rights mean in today’s world? For different governments, peoples, and cultures the answer may be conflicting, but the United Nations has sought to solidify those varying axioms in a single comprehensive document known as The Universal Declaration of Human Rights- a universal and internationally protected code to which all nations can subscribe and all people aspire. Created by a diverse and multicultural group who worked assiduously over a two year period to ensure that the draft text would reflect the different cultural traditions from which they came and incorporate common values inherent in the world’s principal legal systems and religious and philosophical traditions. Most importantly, they wanted to create something that would reflect a shared vision of a more equitable and just world.

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“Art is our one true global language. It knows no nation, it favors no race, and it acknowledges no class. It speaks to our need to reveal, heal, and transform. It transcends our ordinary lives and lets us imagine what is possible.”
Richard Kamler
Artist, Educator and Curator
 
As I look forward to the impending holiday season, with its focus on the art of  giving and receiving of gifts, thanksgiving and gratefulness, I cannot help but take stock of something very dear to me, which I find incredibly important to the issue of post-conflict development – that is, the use of the arts as a method of healing.  Three particular groups of people come to mind as I think about this   Veterans, Victims of the Rwandan Genocide, and Africans of the Trans-Atlantic slave trade.

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I truly believe that my autism is both a challenge and a strength in my life particularly, the issue of being able to earn a living.   Unemployment rates are frankly high for people in general, but studies in the US show it is greatly higher for those with autism. For example, the organization Easter Seals reported in a 2008 study that 22 % of people with autism over the age of 16 have a paying job, compared to 75% of people who don’t have autism, as reported by parents. (Easter Seals, 2008).  There are as well, many people with autism who are unemployed or underemployed. I am using the opportunity of the International Day for Persons with Disabilities to explain to you a little bit about autism, some of the challenges we face in getting jobs and some solutions that are currently being tried.

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During Rio+20, a series of side events and discussions created ideas that manifested into perhaps the most exciting initiative that happened during the Conference. Members of civil society expected to see more accomplished at the Conference and felt compelled to come up with their own action packed document. The creation of the People’s Sustainability Treaties by worldwide civil society organizations is an all-encompassing framework for action. Hundreds of individuals and organizations have pledged their commitment to taking action on these treaties by signing the manifesto which was created on the last day of the conference.

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