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Thanks for reading Prism: the newsletter from the National Autism Resource and Information Center.
AutismNOW.org: The National Autism Information and Resource Center

July Prism

Pride

By Karen Wolf-Branigin
Director, Autism NOW Center


The July 2013 Autism NOW Center Prism newsletter is about pride - a sense of one’s own worth. Learning about ordinary people who do extraordinary things can be inspiring. My cousin Therese Smith from Westland, MI was recently awarded a White House Champions of Change Award and I was delighted to accompany her to the celebratory activities. While I was simply a guest, I felt proud to know and be with her on this important occasion. Feeling proud of yourself or someone you know is a wonderful feeling. We believe that you will enjoy this edition of Prism where we celebrate Autism Pride.  

Autism Now Resources
The Autism Now Center has several resources that exemplify personal pride. Take a few minutes to read a blog by Nicole LeBlanc, a member of The Autism Now Center’s National Advisory Committee, as she shares her perspective on personal pride.

Bonnie Zampino is a mom and in her lovely blog “Words,” she opens her world to readers and describes the pride she has in her son Brendan. We’re proud to bring you her story as we celebrate pride.

Autism Pride: What are we learning from others?
http://www.aspergianpride.com is a website dedicated to celebrating the accomplishments of the Aspergian community. Much more than a website, contributors share information and inspiration on Autistic culture and civil rights.

A program in Halifax, Nova Scotia teaches autistic adults how to make jewelry. The Promise of a Pearl program recently decided to bring their crafters and their products to a community market. Learn more about how these proud business people are living fuller lives in their communities.
 
Lance Waters is proud to have accomplished his dream of living in his own home. This video provides a glimpse into his new home and what he’s doing to make things happen in his life.

What does the research tell us?
The U.S. Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration’s report, Changes in prevalence of parent-reported Autism Spectrum Disorder in school-aged U.S. children: 2007 to 2011-2012
describes that more and more parents are reporting ASD symptoms to clinicians, which helps bring autism out of the shadows.
 
Take a few minutes today to reflect on what you are proud of in your life. And don’t be shy - share your story with someone else. Not only will you feel good, so will they, just like I feel about my cousin Therese.

Outstanding Advocate of the Year

By Amy Goodman
Co-Director, Autism NOW Center

Amy Goodman
It started out as any ordinary day, but around 11:00 a.m., I received a call from Jennifer of the Autism Society of America. She was calling to inform me that I was selected as the recipient of the “Outstanding Advocate of the Year” award, and that this award was to be presented to me on July 12th at the Autism Society’s annual conference in Pittsburgh, Pennsylvania. After I got off the phone with her, my head was spinning and my heart rate had gone up. I needed to calm my nerves because I was starting to display some of my autism characteristics, most of which are not appropriate in the work environment. My whole entire body was all jittery and I was having trouble containing my excitement. I felt like I would explode if I didn’t tell someone and quick! I first told my supervisor and a few colleagues that work in the open hallway outside my office door. Fortunately, the news came just in time for our staff meeting and I was able to make an announcement to The Arc’s entire staff.

I let all my friends and family know about it through Facebook and Twitter. The Arc and Autism NOW made many announcements about it through their social media channels for the next two weeks. On July 9th, 2013, I finally took my flight to Pittsburgh to attend the conference and receive my award. It was presented to me in the general session that Friday around 9:45 a.m. I walked up on the stage, shook the presenter’s hand, and stepped up to the podium to thank everyone that made a difference in my life.

I started with my father, who is no longer with me, because I always wanted him to see me get my first award. I also thanked important individuals in my life that not only helped me to get to this point, but influenced, encouraged and showed me the way or pointed me in the right direction. I ended with why I do what I do - why I spend four hours a day or more commuting to my job and the answer is simply because I do what I love. I am just happy to have a job that suits my unique needs and is a perfect fit for me.

This award is not only for me personally but to be shared with all my colleagues at The Arc, my friends and colleagues at The Autism Society of America, and Robert Hunter of The Grateful Dead for enabling my brother to make a connection with Kent Moreno, who told us about Asperger’s syndrome in the first place. Also, all my friends and colleagues at Marshall University and the College Support program because if it were not for all their support and encouragement, I would not be where I am today. I owe it all to them.

This is an award that means a lot to me because it is proof that all my hard work and dedication to my profession has paid off, and that individuals do appreciate me. That what I do makes a difference in the lives of individuals with autism. That I am able to share my life with those in need, and I feel proud to be able to say I’m an individual with autism who has paved the way for others to enjoy life to the fullest extent.

I may not move mountains by myself, but I can advocate and give others a voice they may not know they even have. This award has validated my life for me and I now know I am where I need to be and that I will survive in this world. It has given me a sense of self-worth and the confidence to know I can achieve or accomplish things above and beyond what others said I would never do.

Ten Commandments of Parents with Kids on the Autism Spectrum

By Mari Nosal

Mari Nosal demonstrates her pride as a parent by sharing 10 ways that others can effectively support and interact with individuals with autism and their families.
  1. Thou shall not avoid my family when you see us in a public place. Autism is not a communicable disease. It is merely a way of life. You will not catch it by being my friend. Hang out with me and my family and learn about us. Once you understand our challenges it will be self-evident that we have hopes, dreams, and feelings. We love our children just as much as you love yours. Who knows, you might grow to accept us if you give us a chance.
  2. Thou shall not judge my family. If my child is having a meltdown and seems inconsolable, do not assume I am an incompetent parent. You cannot always judge a book by its cover. Do not tell me that my child is spoiled, ask me why I cannot control him, or tell me that my child needs to be punished. He is already punished enough by remarks from people who assume they know what is best for my family, even when they do not even know us. I am attempting to be a good parent. Your negative remarks hurt me greatly. Your positive remarks give me the internal strength to go on, and rejuvenate my belief in me and my child.
  3. Thou shall be patient. My child may have a large expressive vocabulary. This is rote knowledge that has been memorized. In this case, he may not process (receptive language) what others say unless it is presented in a literal, concise, and direct manner. My child may lack a large vocabulary (expressive vocabulary) but make no mistake that he can comprehend you through his receptive vocabulary. Get to know my child and convey messages through his learning style. You will be surprised at what a wonderful child he is if you get to know him.
  4. Thou shall not snub my other children. It is difficult for neurotypical siblings to grow up with a sibling that has special needs. My heart breaks for my children when other children decline sleepovers, parties, and more because of my special needs child. Providing equal attention to all my children is quite the balancing act. Their sibling with disabilities occasionally requires more time and energy. This is not by choice but necessity.  Please make a point to help out and make my other children feel welcome at your home or functions.
  5. Thou shall not judge my housekeeping skills. My house may occasionally be in disarray. That mess is a sign of love; a sign of a family that has placed priorities on going to therapy appointments, doctors, social groups, and more over the importance of several dust balls. We balance jobs, carpools, and daycare, just like the rest of society as well.
  6. Thou shall believe in my child. Do not call my child stupid, lazy, spoiled, selectively deaf, a brat, and more. My child has a neurological impairment which can affect processing skills, focusing, expressive or receptive speech, and internal control mechanisms, i.e. “losing it”. There is an old phrase, “We become what we hear.” The self-fulfilling prophecy is alive and well. My child tries hard to learn, control his behavior, socialize, etc. Please attempt to tell him what is right with him, not only what is wrong. Thank you for being a role model for my child.  Children become what children see.
  7. Thou shall accept me and my family for who we are. My child may not appear to have challenges on the exterior. Appearances can be deceiving. I can equate this with a cast. If an individual is wearing a cast, we know they have a broken arm. Children with autism often appear the same as all other children.  When you deal with my child, please remember that his emotional age is roughly four years behind his chronological age. Keep that in mind when creating expectations for him. My child cannot be fixed. He can be smothered with acceptance. His Asperger’s has created the young man that we have grown to love and admire. We would not change him for anything. He and I both need society’s acceptance.
  8. Thou shall not assume my child is being defiant. My child’s difficulties with receptive language can mimic defiance. When directions are not broken down into literal simple steps, he may appear to be ignoring you. He is not being defiant. He did not understand your directions. Tell him to pick up the books in the classroom, put them on the bookshelf, then sit down. This will most often result in compliance. Do not just say “put the books away.” He most likely will not know which books, where, when, or how. Be patient, as he really wants to please you.
  9. Thou shall tell parents of autistic kids what they do well. We struggle with our child’s special needs. We  attempt to carve out time with our other children so they do not feel left out, carve out time for our spouse, attempt to create a copacetic environment for our families, love and accept unconditionally, and more. We parents are occasionally insecure regarding our parenting skills. We are not immune to the glaring disapproving eyes, and mumbles of disapproval regarding our parenting style of our special needs kids. We need support and understanding from you as we feel helpless when we cannot help our child during a meltdown or other challenging times. Please tell us what we do right occasionally and offer to lend a hand. It means the world to a parent of a special needs child to receive a compliment regarding them or their child when the parent feels like giving up hope.
  10. Last but not least, thou shall remember that we are all on this earth to make a contribution to society. Children on the spectrum make contributions as well. You just have to look a little deeper. For me, my son has taught me to be more patient, humbled me, taught me to look at what is good now and not worry about what may not happen 10 years down the road. I do not take things for granted because of my experiences. My husband and I learned the meaning of teamwork. Most of all, my son has taught me to never underestimate what strides he will make in our world. It may be on his timeframe and not mine. We are climbing to the peak of the mountain, with occasional slips, but climbing higher every day nonetheless.
 
Mari Nosal, M.Ed., CECE  spent years as a school age coordinator, blogger and author, and has 25 years’ experience within the human services and education fields. She has had special needs articles published in several magazines. She is certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. Mari Nosal received her Master’s in Educational Foundations in 2009. She adores working with children and educators within the classroom. She has presented to The Children's Workshop team and shared her knowledge, experience, and insights with our staff. Mari offers tips on curriculum development and behavior modification within the classroom and through in-services. She is certified in Community Crisis Intervention by the Community Crisis Intervention Team of Bristol County. As a parent of an adult son with Asperger’s, she shows others how it is possible to overcome obstacles and achieve your goals.

What is The Arc Up To?

Having pride in yourself includes taking care of your own health. For the past year, The Arc has been hard at work alongside the Centers for Disease Control to address the many health disparities faced by people with intellectual and developmental disabilities including autism. In too many cases, health care providers lack the training to effectively partner with their patients with I/DD for good health. And, information about personal health has not been made accessible and widely available so that people with I/DD have the tools they need to play an active role in their own care. Vision and hearing loss, obesity, poor oral health, and mental health issues are among the common, largely preventable problems that disproportionately affect people with I/DD. And, as many as 55% of people with I/DD may be considered obese, a rate almost twice as high as that of the general population.
 
The Centers for Disease Control and Prevention (CDC) has made the health of people with intellectual disabilities a priority in part by funding The Arc to promote and improve the health of people with I/DD through the HealthMeet project.  Beginning in 2012, chapters of The Arc in five states began hosting free health assessments and health promotion activities for people with I/DD. Chapters and The Arc of the United States are training medical and health professional volunteers and students on how to work with this population along with teaching individuals about their own health through innovative, cognitively accessible state-of-the-art technology. The Arc is also collecting the health information of HealthMeet participants using HIPAA-compliant electronic health record technologies powered by Therap, LLC, to provide hard-to-find data on people with intellectual disabilities that will inform and improve future healthcare. You can find out more about the HealthMeet project at www.thearc.org and access webinars about a variety of health topics as well.

Amy's Book Corner

Try Another Way: A Story of Self-Determination, by Jo Lynn Osborne

This is a book about self-advocacy and advocating for the ones we love. It is the story of one remarkable woman’s transformation from heartbroken mother to a vigilant advocate for her son and all people with developmental disabilities. Through her persistent advocacy for her son, he eventually learns to advocate for himself.

I would recommend this book to any single mother of a child with a disability because it shows you that you are not the only one going through this. If you are persistent enough, you will get what your child needs to be successful in life. An independent life is possible for anyone if they just try another way, and rejoice in Autism Pride.

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Disability Scoop: Race, Ethnicity May Influence Access To Autism Care
Copyright © 2013 The Arc of the United States, Inc and Autism NOW, All rights reserved.
The Arc
The Autism NOW Center is a national initiative of The Arc.
 
The Administration on Intellectual and Developmental Disabilities