Autism Advocate Fall & Winter Edition 2013

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AUTISM ADVOCATE FALL & WINTER 2013 - VOL. 63 NO. 3 | WWW.AUTISM-SOCIETY.ORG

Robin is an adult with autism living independently in her own condo. She is celebrating her 19th year of employment at a Publix grocery store in Florida.

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Board of Directors October 2012 - October 2013

Officers

The Autism Advocate

James Ball, Ed.D, BCBA-D., Executive Chair Ron E. Simmons, Vice Chair Sergio Mariaca, Treasurer Lars Perner, Ph.D., Secretary, PSA Chair Scott Badesch, President/CEO

Donna Andrus Jon Basinger Andrew Baumann Michael J. Brown, Esq. Denise Sawan Caruso Kevin Custer George Daly Linda Walder Fiddle, Esq. Anne Holmes, M.S., CCC, BCBA, PPA Chair Joseph Joyce Terry Murphy

The Autism Advocate is a publication of the Autism Society. Copyright 2013 by the Autism Society. All rights reserved. No part of this magazine may be reproduced in any form or by any electronic or mechanical means, including photocopying, recording or any information storage and retrieval system, without written permission from the publisher. The information, views and any recommendations or endorsements expressed by authors, advertisers and/or other contributors appearing in the Autism Advocate do not necessarily reflect the views, opinions, or recommendations or endorsements of the Autism Society. The publication of such information and the advertisements included within the Autism Advocate do not constitute an endorsement of such information or of any treatment, product, methodology and/or service advertised.

Honorary Board Members

Viewing Online

Temple Grandin, Ph.D. Ruth Christ Sullivan, Ph.D.

To view the Autism Advocate online, please join the Autism Society at www.autism-society. org/membership. For more information, please visit www.autism-society.org or call toll-free: 1-800-3AUTISM.

Board Members

Publisher Scott Badesch, President/CEO

Senior Director of Content Tonia Ferguson

Staff Margarita Benavides, Autism Source Specialist Mary Beth Collins, Director of Programs John Dabrowski, Chief Financial Officer Yuliana Diaz, Autism Source Specialist Selena HernĂĄndez, Manager of Support Services Rose Jochum, Autism Source Manager Nichelle Kolen, Receptionist/Administrative Assistant JosĂŠ Matos, Autism Source Assistant Catherine Medovich, Autism Source Specialist Anli Montilla, Financial Specialist Anne Nebeker, Autism Source Specialist Lindsey Nebeker, Development Specialist Jennifer Repella, Vice President of Programs Brendan Ryan, Administrative Assistant Sandra Smith, Affiliate Specialist Rebecca Ward, Intern

AUTISM ADVOCATE | FALL & WINTER 2013

Contact the Editor To contact the editor, please call (301) 657-0881 extension 9020, or email editor@autism-society.org

Advertising If interested in advertising in the Autism Advocate, please call (301) 657-0881 extension 9012, or email lnebeker@autism-society.org

Inquiries All other inquiries should be addressed to: Autism Society 4340 East-West Highway, Suite 350 Bethesda, Maryland 20814 Toll-free: 1-800-3AUTISM | Fax: (301) 657-0869 www.autism-society.org


FEATURE GETTING YOUTH WITH AUTISM SPECTRUM DISORDER READY FOR EMPLOYMENT By Dr. Temple Grandin

PRESUME COMPETENCE, PRESUME EMPLOYMENT Scott Badesch

WHEN THE SCHOOL BUS STOPS COMING Dr. David Holmes

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IN THE LAND OF “PENNIES-PER-HOUR” Kate Gladstone

SETTING EXPECTATIONS EARLY Alisa Dror

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THE CONNECTION PROCESS Dena Gassner, LMSW

ME THE EMPLOYEE Emily Brooks

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40 ADVOCACY: THE FAIR ADVOCATING FOR LABOR STANDARDS THE FAIR LABOR ACT STANDARDS ACT Alison Alison Wohl Wohl

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CREATING POSSIBILITIES Tonia Ferguson

12 FROM SHELTERED WORKSHOPS TO INCLUSIVE WORK OPPORTUNITIES Kerri Melda

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CUSTOMIZED EMPLOYMENT: NOT JUST A JOB Melanie Johnston

36 ADVOCACY 101 Jennifer Laszlo Mizrahi

48 AFFILIATE HIGHLIGHTS The Autism Society of Indiana & The Autism Society of Minnesota

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October is National Disability Employment Awareness Month “Because We are EQUAL to the Task,” the theme of this year’s NDEAM, reflects the reality that people with disabilities have the education, training, experience and desire to be successful in the workplace. NDEAM has been around for nearly 70 years. In 1945, Congress enacted a law declaring the first week in October “National Employ the Physically Handicapped Week.” Over the years, the name changed and the week was expanded to a month. But the goals remain the same. NDEAM is led by the Department of Labor’s Office of Disability Employment Policy, but the true meaning of the month is evidenced by the events held by employers, schools, organizations and communities each year.


COLUMNISTS Dr. Temple Grandin, Ph.D. www.templegrandin.com

Dena Gassner, LMSW www.denagassner.com

Dr. Temple Grandin is inarguably the most accomplished and well-known adult with autism in the world. She is an animal scientist, professor, and Autism activist.

Dena Gassner is a nationally recognized service provider to teens and adults with autism.

Scott Badesh www.Autism-Society.org

Emily Brooks www.emilybrooks.com

Scott Badesch is the President and Chief Executive Officer at the Autism Society. Before joining the Autism Society national office, he served as President and CEO of the Autism Society of North Carolina.

Emily Brooks is a journalist, whose focus is on changing people’s understanding of gender, sexuality, and disability issues. She currently works with teenagers and children with special needs.

Dr. David L. Holmes www.lifespanservicesllc.com

Allison Wohl www.thecpsd.org

Dr. Holmes is currently the Chairman and CEO of Lifespan Services, LLC. and serves on the Autism Society’s Panel of Professional Advisors.

Allison Wohl is the Executive Director of the Collaboration to Promote Self-Determination.

Kerri Melda www.thecouncil.org

Jennifer Laszlo Mizrahi www.RespectAbilityUSA.org

Kerri Melda is Vice President for Research & Product Development with the Council on Quality and Leadership.

Jennifer is president of RespectAbility, an organization that works to empower people with disabilities to achieve the American dream.

Alisa Dror Ph.D., BCBA www.pinnacle-ct.org

Tonia Ferguson, Esq. www.Autism-Society.org

Dr. Alisa Dror holds a MA and Ph.D. in Special Education and is a NYS certified special education teacher.

Tonia Ferguson is Senior Director of Content at the Autism Society. She is currently working on content for the website, e-newsletters and social media channels.

Melanie Johnston, M.A., SLP www.britesuccess.com

Kate Gladstone www.HandwritingThatWorks.com

Melanie Johnston is a specialist in autism and developmental disabilities, consulting with schools, individuals and corporations.

Kate Gladstone is a handwriting instructor and evaluation consultant. She is an individual on the autism spectrum and has self-taught herself and teaches others with autism how to improve their writing abilities.

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Letter from our guest editor, Zosia Zaks

Jump In Work is a vital part of a successful adult life. Adults see their dignity reflected in a job well done. No one wants to feel useless. Adults don’t want their talents and interests to go unrecognized. Research has shown that employment correlates with quality of life. Why, then, do we have such an extraordinarily high unemployment and underemployment rate among adults on the autism spectrum? The articles in this issue look at employment through various lenses in an attempt to answer this question. Dr. Temple Grandin in her article Getting Youth with Autism Spectrum Disorder Ready for Employment emphasizes the need to build on strengths. We need to shift our focus from what a person can’t do to what that person is doing well already. Here is a real-life example: Oscar would not attend to job tasks and frequently wandered away from job sites. He paced constantly at home and at work. His agency declared him a liability and his job coach deemed him unemployable. Then one day, Oscar’s workgroup was assigned to clean hotel rooms. When the hotel owner spotted Oscar pacing up and down the halls, Oscar’s job coach rolled his eyes, anticipating trouble. But the owner shouted ecstatically, “That’s the guy I need!” The owner had been unable

to find someone to work the night shift going up and down the halls collecting room service trays, and then going up and down the halls again to deliver newspapers. Who wanted to walk the halls of a large hotel all night? Until he met Oscar… Oscar works there to this day and is a star employee. Why aren’t we thinking creatively like this? Too often, as Dr. Temple Grandin, suggests, we only see deficits. The customized employment discovery process described by Melanie Johnston in her article Not Just a Job and the article by the Kerri Melda, Moving from Sheltered Workshops to Inclusive Work Opportunities enables us to build on what people are doing and enjoying already. In this case, Oscar found a place where his pacing was an asset. In customized employment, offering a job to a disabled person ceases to be an act of charity or a day-filler. Utilizing strengths, interests, and talents allows adults on the autism spectrum to meet employer needs and to contribute to a business just as any other adult worker. Several authors in this special issue call for individuals on the autism spectrum to work as early as possible and I can’t second this strongly enough. Too often I see individuals on the autism spectrum look at some jobs as “beneath them” or that aren’t related to their dream job. But washing dishes, walking dogs, checking I.D. tags at a gym - these jobs give individuals on the autism spectrum a chance to learn how to show up on time, how to keep yourself neat and organized, how to talk to co-workers, how to tolerate nonpreferred tasks, how to go to work when you rather go to the football game - skills individuals need to master before landing a dream job. A college student who had never worked previously got his dream job in a large accounting firm right after college, but unfortunately he was fired about two weeks into his career because he didn’t know how to get along with his co-workers, how to act appropriately during moments of frustration,


how to share credit with teammates, or how to take criticism from a supervisor. Any time spent working is critically valuable because the individual is learning the very communication and social skills that are crucial for long-term success. We need to encourage youth to take jobs for the sake of learning how to work.

own issues, not only enables a person on the autism spectrum to disclose, but also to adapt, and advocate. Self-knowledge gleaned is also part and parcel of the discovery process described in many of the articles: finding a spot in the world where you are needed is the very experience that so often defines a high quality of life.

This edition of the Autism Advocate refreshingly notes that untangling the employment dilemma begins with strong community connections. Strong ties to neighbors, relatives, local colleges, understanding local businesses, and other community partners can open up opportunities for youth on the autism spectrum to gain the skills, experiences, and confidence they need to work in integrated settings.

Calling attention to employment issues is both urgent and timely. We must tackle this issue ardently, and we must tackle this issue NOW. Emily Brooks in her article, Me the Employee, envisions a world in which a child on the autism spectrum will walk into class and meet a teacher who has a big bag of sensory tools. That world is very close or luckily in some cases already here! We are living in a time of unprecedented acceptance and understanding. Let’s use this moment to solve the problem of unemployment and underemployment not just for ourselves and our loved ones on the autism spectrum, but for society, too. Society is greatly enriched by individuals with autism and their way of thinking and solving problems. Individuals on the autism spectrum are needed, and now is the time to jump in!

Often parents and professionals are so afraid to let adults with autism work in the community. Maybe they can’t handle it, or maybe they will do something embarrassing in public. But how else can youth with autism gain experience? Community integration is the process, not just the goal. If someone has challenges interacting with peers, he or she needs to interact with those peers to learn how! We have a very high tolerance when non-disabled youth get fired, change their minds, or make mistakes - it’s all part of growing up. Why do we hold youth with autism to a different standard? Again, a strong community network can allow a youth with autism to have parallel life experiences. Lastly, the article by Dena Gassner, Connection Process explains the importance of selfawareness. Sometimes people are afraid to use the ‘a’ word but adults on the autism spectrum need language to describe their experiences. As Melanie Johnston and Dena Gassner note, how can someone plan for employment without knowing about autism in general and how autism impacts his or her life specifically? In fact, learning about autism, and learning about one’s

Zosia Zaks, M.S., M.Ed., CRC zzaks@autismability.com Zosia Zaks is a professional, a self-advocate, and a parent of two children on the autism spectrum. Using a customized employment model to help clients reach their employment goals, Mr. Zaks infuses his work with multiple perspectives, while always seeking to enhance potential and foster inclusion. He is also an adjunct professor in Towson University’s Post Graduate Autism Certificate Studies program and he works in the University’s Hussman Center for Adults with Autism. Since 2009, he has been a member of the Panel of People on the Spectrum of Autism Advisors.


Panel of Professional Advisors Ann Holmes, M.S., CCC, BCBA (Chairperson) James Ball, Ed.D., BCBA-D Margaret Bauman, M.D. Barbara Becker-Cottrill, Ed.D. Lois J. Blackwell Eric Courchesne, Ph.D. Margaret Creedon, Ph.D. Geraldine Dawson, Ph.D. Anne M. Donnellan, Ph.D. Glen Dunlap, Ph.D. V. Mark Durand, Ph.D. William L.E. Dussault, J.D. Stephen M. Edelson, Ph.D. Judith E. Favell, Ph.D. Peter Gerhardt, Ed.D. Temple Grandin, Ph.D. Doreen Granpeesheh, Ph.D., BCBA June Groden, Ph.D. Paul Millard Hardy, M.D. Robert L. Hendren, D.O. Martha Herbert, M.D., Ph.D. David L. Holmes, Ed.D. Susan Kabot, Ed.D., CCC-SLP Martin Kozloff, Ph.D. Rebecca Landa, Ph.D., CCC-SLP Gary LaVigna, Ph.D. Bennett L. Leventhal, M.D. Brenda Smith Myles, Ph.D. Cathy Pratt, Ph.D., BCBA Christine Reeves, Ph.D., BCBA-D Frank Robbins, Ph.D. Stephen Shore, Ed.D. Ruth Christ Sullivan, Ph.D. Luke Y. Tsai, M.D. Diane Twatchman-Cullen, Ph.D., CCC-SLP Jennifer Twatchman-Reilly, M.S., CCC-SLP Paul Wehman, Ph.D. Harry Wright, M.D., MBA Patricia Wright, Ph.D., MPH, BCBA

Emeritus Members Edward Carr, Ph.D., BCBA (1947-2009) O. Ivar Lovaas, Ph.D. (1927-2010) Gary Mesibov, Ph.D. Bernard Rimland, Ph.D. (1928-2006) Eric Schopler, Ph.D. (1927-2006)

Advisory Panel of People on the Spectrum of Autism

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Lars Perner, Ph.D. (Chairperson) Darrius Frazier Dena Gassner, LMSW David George Sharisa Joy Kochmeister Kerry Magro Sondra Williams Zosia Zaks, M.Ed.

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The Right to Work October is National Disability Employment Awareness Month and throughout this month, the Autism Society is raising awareness on the important issue of employing individuals with autism and their right to work. Today, of the estimated 54 million Americans living with a disability, only 20% are employed or seeking employment, compared to almost 70% of Americans living without a disability. We know that there are many businesses that are willing to hire people with autism. A prime example is Publix grocery store, which hired Robin Millan who is celebrating her 19th year of employment at the local store in her community. Robin is one of thousands of workers with Autism Spectrum Disorder (ASD) who are skilled, responsible and prepared to succeed! We need to make sure that once young adults leave the public school system, they are able to maximize their independence, well-being and autonomy through having a job and a place to call home. With the unemployment rate as high as it is for adults living with autism, society must understand the issues and address the underemployment of individuals with disabilities. This issue of the Autism Advocate will shed some light on employment issues for individuals with autism and ways to address the job needs of adults living with autism. Through our efforts across the country, our state and local affiliates are engaged daily in helping individuals find work and helping employers understand the high level skills that a person living with autism brings to a job. It’s time, to stand-up for individuals like Robin who seek to gain meaningful employment in their community. We all know the good that comes from being employed. Having a job and liking the work you do, maximizes selfsufficiency, independence and quality of life. The Autism Society is a critical link for thousands of individuals across the country in their employment success and independence. In 2013, employment is more critical than ever for people with autism and a new generation of youth with autism entering the workforce; individuals with autism have the Right to Work. Sincerely, Dr. Jim Ball, Ed,D., BCBA-D Executive Chair Autism Society Board of Directors


SAVE THE DATE! INDIANAPOLIS | JULY 23-26, 2014

45th Annual Autism Society National Conference | Indiana Convention Center The Autism Society National Conference and Exhibition is the only event to consistently bring together professionals, individuals on the autism spectrum, family members and advocates each year for in-depth discussions of what’s new in the field of autism and how to improve existing services and supports. This year the conference will be in Indianapolis where we will feature world-renowned keynote speakers and an exciting program to empower attendees and plenty of networking opportunities so affiliates can learn from other affiliates about what’s working in the field and how each affiliate is impacting the lives of individuals on the autism spectrum and their families.

The Indiana Convention Center & Lucas Oil Stadium is located in the heart of downtown Indianapolis. In the blocks surrounding the Indiana Convention Center, you’ll find affordable food options with more than 200 restaurants, entertainment choices and great hotel accommodations. Plus, it is right next door to Victory Field, which Sports Illustrated called “the Best Minor League Ballpark in America.” We hope you will join us for an exciting conference, networking and plenty of entertainment that Indy has to offer. See you there!


WHAT’S

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The Campaign for Disability Employment is a collaborative effort to promote positive employment outcomes for people with disabilities by encouraging employers and others to recognize the value and talent they bring to the workplace.

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FEATURE STORY Temple Grandin

Getting Youth With Autism Spectrum Disorder Ready for Employment Temple Grandin

Dr. Temple Grandin, Ph.D. www.templegrandin.com Dr. Temple Grandin is inarguably the most accomplished and well-known adult with autism in the world. She is an animal scientist, professor, and Autism activist. Her career has involved successes in designing livestock-handling equipment and writing numerous books, which have been best-sellers.

It is really important to teach youth with Autism Spectrum Disorder (ASD) work skills. They need to learn both the responsibility and discipline of doing a job. When I was 13, my mom talked to a local seamstress in my community and got me a summer job. When I was 15, I cleaned horse stalls and took care of eight horses. I was proud of both because of the responsibility and the recognition I received for doing a good job. My older friends on the autism spectrum actually did paper routes and they were very successful. The skill a paper route taught was discipline on getting up early and being on time and entrepreneurship. In most communities paper routes are gone, my theory is why do we not create jobs to teach all youth those same skills. Parents and teachers need to “get creative” and create these jobs in their local community where young people live and learn. Below are some examples of substitutes for the paper route jobs: Walking dogs for neighbors. The dogs have to be walked every day regardless of the weather. This helps teach the child to be responsible and make sure the dogs are kept safe. 1. Maintaining the website for a church or community group. 2. Working in a farmer’s market or helping out at a small local store. 3. Fixing computers for local businesses in the community. 4. Helping an elderly person with shopping.

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College and Networking There are some students on the autism spectrum for whom college is the right choice and for others a trade or technical school would be more appropriate. If an individual with ASD is attending college, it would be great for that student to have an internship that is relevant to their career goal. When I was in college, I interned one summer at a research lab, and rented my own house that I shared with another student. Both my mother and one of the faculty members at Franklin Pierce College helped me with this process as I began to figure out how the college environment all worked. Many great opportunities arrived through the back door or what many may call networking. Networking is key to getting your name and face out in the community, especially if you are a poor interviewer because of anxiety. The college internship I got was because I talked to a faculty member who told me she knew an individual in the research lab. I get asked all the time about how to deal with doing poorly at an interview. My advice is to try to avoid them and to sell yourself by showing a portfolio of work you have done in the past and network by building relationships in your community. I sold cattle design jobs by showing photos and copies of my design drawings. People thought I was weird but they were impressed by my drawings. I learned that you never know when you may meet the person who can open a door for you. Today it is easy to always have your portfolio on your phone. Some of the things that can be shown on a phone are pictures of artwork, designs, drawings, math equations, origami, computer programs, and samples of

writing. But most importantly, you should show work that is appropriate for the job you want. Finding the Right Career I have always said, “You have to show kids interesting things to get them interested in interesting things.” This is why I became fascinated with optical illusion rooms; it was because I was exposed to it when I saw it in a movie when I was a child. A retired mechanic might be an avenue to get a teenager interested in fixing cars and a next-door neighbor may be willing to introduce the youth to computer programming. In my book,

The Autistic Brain, I discuss choosing careers that use a child’s strength. My career in cattle equipment design used my strengths and skills. Below is a list of possible careers for different types of thinkers. Visual Thinkers – These are the students who may be good at art and building. My work I have done on cattle equipment design would be classified as the field of Industrial Design. The following are examples of some careers for these students: Architect; Animation; Drafting and drawing; Photographer; Auto mechanic, elevator mechanic; Fine artist; Industrial design; Skilled trades; and Theater Lighting. Math Thinkers – These are the students who are good at math. The following are some careers for these students: Science, Technology, Engineering, and Mathematics (STEM) Careers; Computer programming; Engineering; Physics; Data-Mining; Chemistry; Musician; Actuary; Debugging and testing computer programs.

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Word Thinkers – These are the students who often excel in writing and detailed knowledge. The following may be some careers for these students: Journalism; Specialty Retail (expertise in products); Teachers; Museums; Universities; Accounting; and Bookkeeper. Also, for individuals who may be more significantly impacted by autism here are a few examples for possible career opportunities: Sorting experts (recycling, bagging, or coding small electronics parts, sorting documents); Delivery (within a hotel or within a hospital); Hospitality (visit elderly or those in a hospital); Animal lovers (basic pet care or assistant at a clinic); Input seekers (e.g. delivering water bottles, loading & unloading).

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AUTISM ADVOCATE | FALL & WINTER 2013

The moral of the story is that we have to focus on the strengths of our youth with autism. Sometimes our focus on deficits is so intense and so automatic that people lose sight of strengths and skills. We have got to think differently, if we want those responsible for employment efforts in our nation to value abilities of all those on the autism spectrum. For me, autism is secondary. My primary identity is an expert in livestock. Autism is part of who I am, but I will not allow it to define me. For so many of our youth with ASD, identifying their strengths can change their lives. We must not accommodate just their deficits but cultivate their strengths--so their dreams will come true.


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Scott Badesch

Presume Competence, Presume Employment

Scott Badesch www.Autism-Society.org Scott Badesch is the President and Chief Executive Officer at the Autism Society. Before joining the Autism Society national office, he served as President and CEO of the Autism Society of North Carolina. He has been active in the non-profit sector for over 30 years.

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The Challenges I remember getting my first job at the age of 13, when I was hired by a local country club to be a caddy. I made $5.00 plus tips for carrying two bags of golf clubs for 18 holes each day. As a 13 year old, I had $40.00 in my pocket to buy whatever I wanted for that week. But today millions of individuals living with Autism Spectrum Disorder (ASD) do not have that luxury, many are not selfsufficient and do not live independently. Job prospects for adults with autism in the U.S. are crushingly bleak. As our nation debates the need to keep lowering our national unemployment rate below 8%, I keep asking myself when are we going to admit that a rate of 70% of unemployed individuals living with a disability is unacceptable and morally wrong. We must not deny a person living with ASD the right and opportunity to work. Employees living with autism are not only skilled workers, but tend to have longer tenure at a company compared to workers living without a disability, thus saving businesses money in the long run. So, why is there such a high rate of unemployment among adults living with autism? Simply, our society does not Presume Competence. It is a change in mindset away from an expectation of charity to an expectation that individuals with autism have the appropriate level of skills to be employed. The Autism Society and our 107 affiliate network are strongly advocating for a firm, long-standing federal commitment to increase


and improve employment outcomes for individuals with autism. We are working across the country to promote Employment First as a workforce strategy so every state will prioritize “employment as the first option� when designing policies, programs, and investments to support employment for people with autism. We must send a strong message that starting early to create employment and a career is a goal for everyone, including youth with autism, and ensure that career readiness begins in kindergarten through high school and will be supported at colleges and universities as youth transition to work.

The Opportunity We must celebrate and support businesses in their efforts to employ individuals with autism. The Autism Society awarded the Philadelphia Phillies the Adam Heavner Employer of the Year Award, for training their staff and vendors to

be the best prepared to welcome individuals and families impacted by autism who attend a baseball game and committing to employment of individuals living with autism. Other past winners have been businesses such as, AMC Theaters, Best Buy and Walgreens which have all demonstrated that hiring individuals with autism just makes good business sense. We are answering calls through our nationally known and respected 7 Day a Week Contact Center (1-800-3AUTISM) to help families, individuals, and so many others to learn how to advance toward permanent employment. The Autism Society is leading by example and helping others see its just the right thing to do by employing individuals with autism. We can’t give up and we must do more. And we will. The opportunity is now; we must not focus on the disability, but the ability. Presume Competence, Presume Employment

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Dr. David Larson Holmes

When The School Bus Stops Coming: The Employment Dilemma For Adults With Autism

Dr. David Larson Holmes www.lifespanservicesllc.com Dr. David L. Holmes is Board Certified in Forensic Science, Behavioral Science and Psychology. Dr. Holmes is currently the Chairman and CEO of Lifespan Services, LLC. and serves on the Autism Society’s Panel of Professional Advisors.

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Taking a Hard look One of the greatest hoaxes one can play on another is to give a person the expectation that life will be better following an exercise and then inform him at the end that you knew all along that it really wouldn’t work out. This hoax is played hundreds of thousands of times on people with autism spectrum disorder, their families and the communities in which they live. For instance, the family member of Charles Vaughn an individual on the autism spectrum said they feel transition is like falling off a cliff. Charles Vaughn reads and dissects each issue of Discover magazine as soon as it lands in his mailbox. Without hesitation he can tell you the speed of light is 186 thousand miles per second. He multiplies gigantic numbers for fun. With Charles’ high school graduation approaching, his parents should be thrilled about their eldest son’s success. Instead, they are terrified. Being 21 and having autism is what terrifies them. Even though he has an above average I.Q., he has not learned to drive and he prefers to spend his free time watching cartoons on T.V.. Charles has received much of the help he needs through school under a federal law that allows people with disabilities to continue their public education until the year in which they turn 21. Through the school, he has started taking a computer course at his local community college and has a part-time job inputting time sheets at a communications company. But all this could end when he graduates and walks into a “bureaucratic black hole.”


America has one of the best public education systems in the world. It promises to prepare children to be able to live the American Dream, yet for people with autism spectrum disorder that promise, is rarely, if ever realized. After years of struggling through the education years, most adults with autism find themselves without any opportunity to enjoy gainful employment or to live life to the fullest in their communities (Holmes and Shore, 2005). The problem lies in two areas: the lack of proper preparation for work during the education years and the lack of laws and funding to entitle adults with disabilities to the same rights established for children under IDEA (Individuals with Disabilities Education Improvement Act of 2004) after they graduate. Even with improved awareness of the needs of adults with autism in our nation and decades of advocacy for appropriate employment services and opportunities for these adults, the majority are living at home with their aging parents with few if any meaningful job opportunities (Howlin, Goode, Hutton and Rutter, 2004). Many individuals with autism who have significant behavioral and cognitive challenges receive custodial care at best or no care at all. Those with higher cognitive capacities may graduate from college only to sometimes end up in psychiatric hospitals, drug treatment centers, or jail because they cannot access appropriate employment supports because of their higher skill sets (Howlin, et. al., 2004).

When families do find adult services they are sometimes generic in nature and do not meet the individual needs. Take for example John (not his real name) whose mother has been advocating for appropriate applied behavioral analysis (ABA) services for her adult son. John was placed in an out of state organization for residential and employment services that utilize the principles of applied behavioral analysis. Once there he “thrived�. After many months of privately paying for the services, his family petitioned the state where they resided to participate in helping to pay for the services. The state declined and offered John a placement in a local program that offered generic services to a variety of individuals with disabilities. The philosophy of this agency was to allow individuals in their care to do what they wanted to do, when they wanted to do it. However, for John this type of setting did not work for him. Time and time again we do this to individuals with autism, we take away their prosthesis. A prosthetic environment for an adult with autism is one that is structured, consistent, dependable, reliable, supportive, accommodating, calming, comforting, but most of all predictable (Holmes, 2007). When we place people with autism in an employment opportunity or setting that does not have the attributes of a prosthetic environment, we have uniformly stripped them of the prostheses necessary for them to be successful. It is no wonder that the majority of adults with autism,

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if they are capable of finding employment opportunities, sometimes fail. Here’s an example of getting a prosthetic environment right for a young adult with autism; Heathrow Airport recreates departure day for a young man with autism (Carolyn Atkinson & Kevin Core, 9/25/13). Four times each year for the past five years, Aaran Stewart has flown from Heathrow Airport to his Boston-area high school and every time, he’s departed from the same gate, ridden the same airport bus and been greeted by the exact same staff members. Coincidence? Not at all. Stewart, 21, has severe autism and obsessive-compulsive disorder, and the Heathrow staff has worked with his family to “re-create the same conditions” whenever he flies. “Without the procedure we wouldn’t be getting on the plane,” Aaran’s mother, Amanda, told BBC Radio 4.

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Throughout the educational years of children with autism, it is a generally accepted that they need predictable environments. Yet when they graduate from school if they can find employment opportunities, they are literally placed under conditions that are not predictable and, therefore, highly anxiety producing and non-reinforcing. Such conditions are counterproductive for adults with autism and result in significant skill loss and loss of talents that could be brought to use for the benefit of the community.

Employment Outcomes What are some of the employment expectations that one should have for an adult with autism spectrum disorder? First would be postsecondary educational opportunities where individuals can learn either a trade or engage in advanced educational pursuits leading to a profession.


Next, competitive employment would be the ultimate goal for all individuals with autism spectrum disorder. If competitive employment is not a reasonable expectation, then supported employment must be considered. Supported employment has many configurations. The less supported approach would entail a job coach visiting the person in employment on a weekly or semi-weekly basis and offering guidance/counsel as to what areas may require improvement and reinforcement where success has been noted. A job coach would support an individual until the person no longer needed support. Ideally, the job coach would make modifications to the job environment or to the job tasks so that challenges would be reduced or eliminated entirely. When an appropriate Transition IEP is developed and implemented the outcome for the individual can be remarkable. For example, Joshua joined the staff of his local bank in Dallas, Texas after years of preparation during high school. The Transition Services Program in his high school afforded him training in using public transportation, a variety of jobs, interview skills, activities in daily living and impulse control. He is now an expert in “creating reports� and is seen as a critical member of the team at the bank (Jeremy Roebuck, the Dallas Morning News, 2/27/2006). Before graduation, an IHP (Individualize Habilitation Plan) or ISP (Individualized Service Plan) must be established through the Division of Vocational Rehabilitation. Both of these plans will be the design plan for employment, day services, and/ or residence services for the individual through his/her adult life.

Once funding has been secured for the adult with autism, then it is essential to determine what might be the best employment opportunities for them. Of course, it is important to identify the specific social, behavioral and cognitive qualities of the individual in question and then to analyze the jobs that are available to ensure that they will compliment the profile of the individual. Once a job has been identified and the proper supports have been put in place, constant monitoring and assessment is indicated. The needs of adults with autism in America are important and the capacity of agencies and families are not large enough to keep up with the projected increase in demand. The job market will have a huge void and finding people to fill the void will be a challenge. It is our responsibility as advocates to ensure that employment efforts are supported at the local, state and federal levels in order that individuals with autism have a voice and can have the American dream-life, liberty and the pursuit of happiness. But the real issue of our times is that this article is a reprint of an original article published in 2007 and sadly the employment outcomes for individuals with autism has not changed significantly since 2007. We need to improve employment outcomes for individuals with autism and make them apart of the workforce now!

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Kerri Melda

From Sheltered Workshops to Inclusive Work Opportunities

Kerri Melda www.thecouncil.org Kerri Melda is Vice President for Research & Product Development with the Council on Quality and Leadership. She has almost thirty years of experience with developmental disability issues.

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Organizations and systems that successfully transition from segregated employment to inclusive employment options and alternatives must be willing to make a radical shift in order for workshop closure and conversion to occur. This shift starts with a belief and understanding that employment is possible for all, including those with Autism Spectrum Disorder. Being successful in this process requires frontend preparation, timely communication, and intense involvement with all stakeholders including family, organizational staff, people receiving services, state and local representatives, and business and community members. It requires an unwavering commitment to the decision that there are alternatives to sheltered workshops. It means that the new core value and focus is one of inclusive and individualized employment, selfemployment and other individualized work alternatives - not center-based activities and segregated work. Individuals on the autism spectrum want to have real jobs; they want to be valued and contributing members of their communities. They do not want continued isolation and segregation to persist.


Quality in Practice • Closing sheltered workshops and converting services into more individualized approaches requires persistence, focus, and a firm belief that segregated workshops are not the way to provide quality individual outcomes and best practice supports. • A strong self-advocacy movement can play a huge and positive role in moving things forward and should be encouraged and highly supported. • Advocate for appropriate transportation to ensure that all have the means to get to and from jobs. • For conversion from workshops to individualized supported work to happen, funding for services delivered in a workshop must stop. • Organizations and states engaging in this process must have the flexibility to be creative in the use of funding and have mechanisms in place for individualized budgeting. • A strong focus on relationship building outside of the service system with community members, organizations and mainstream funding sources will expand options beyond the “system” and into more integrated approaches. • Creating options for self-employment and micro-business efforts give organizations and systems more possibilities to tap into, beyond traditional job opportunities available in the community.

• Forge relationships with universities, colleges, other partners — using an outside perspective strengthens the message of change. Other partners can do and say things that will aid process. • Seek funding from grants; there may be joint grant agreements with providers. • From the funder’s prospective, ensure that you are funding outcomes. Funding should go to successful job placements, number of new placements, and the infrastructure for follow-along services. Negotiation should occur with each provider, with strong expectations around improvement. Some providers may require mandatory technical assistance. • Provide individuals with choices about working full-time or part-time and ensure that they have access to benefits counseling. For those working part-time, assure they have additional opportunities for meaningful daytime activities during non-work hours. • From an organizational perspective, a major piece in transitioning from workshop to real jobs comes in helping people to believe in themselves and that having a job is a possibility. The organization will have to do a fair amount of work with families too in this regard.

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As an organization moves forward to integrate employment for individuals with autism spectrum disorder, CQL | The Council on Quality and Leadership recommends eight (8) key factors in person-centered excellence. These include to:

• Assure that staff have flexibility and autonomy to support people in their employment goals. • Look to make sure that the mission of your organization and practices demonstrate a clear and strong priority for integrated employment.

• Use an assessment and discovery process that tells you what each person is seeking in terms of their employment.

• Track and report on measurable goals for integrated employment for the people supported by your organization.

• Make sure that the planning process utilized is person-entered, flexible and employment outcome based.

• Where possible, use individual budgets to support the person’s employment goals.

• Guide your services and supports by the persons’ employment goals.

To learn more about CQL, go to www.c-q-l.org.

• Use community resources to create opportunities and relationships that support employment first initiatives.

To learn more about CQL and the Personal Outcome Measures® go to http://www.c-q-l.org/pomindex.aspx

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Autism Source™ the Autism Society’s Contact Center Providing Quality Information & Referral for Almost 50 Years Don’t know where to begin? Unsure where to turn when faced with the challenges of autism? Looking for resources in your community? Well, Look No Further!

Autism Source™ Making Connections, Providing Support, Improving Lives

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t’s daunting to search dozens of websites and agencies hoping to find one that meets your needs. The Autism Society has done this work for you–our national contact center, Autism SourceTM, helps you negotiate this maze and connects you to resources where you live. The grassroots nature of our organization is ideal–through our affiliates, those who “get it,” and know local services best, provide guidance to those in search of resources. Autism Society delivers nationwide one-on-one I&R Monday-Friday from 9:00 a.m. to 9:00 p.m. and Saturday-Sunday from 9:00 a.m. to 5:00 p.m. (Eastern Time) through a toll-free number 1(800)3AUTISM and email info@autism-society.org. We also offer comprehensive content on our website www.autism-society.org and a free searchable online directory www.autismsource.org of services and supports available throughout the country. Let our trained I&R staff share information, help you identify resources and identify alternative options so you can make informed choices.


Kate Gladstone

In the Land of “Pennies-perhour” If you are a parent, sibling, care provider, or an individual on the autism spectrum and are concerned about employment, brace yourself! Over 300,000 Americans are “sheltered workshop” employees. Simply put, there is a loophole in a federal law that makes it perfectly legal for those who are institutionalized to be employed at a pay rate of only penniesper-hour, sometimes just pennies-perday, while employees without disabilities are paid more. Kate Gladstone www.HandwritingThatWorks.com Kate Gladstone is a handwriting instructor and evaluation consultant. She is an individual on the autism spectrum and has self-taught herself and teaches others with autism how to improve their writing abilities. She is the Director of the World Handwriting Contest and is the codesigner of the app BETTER LETTERS.

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This loophole is Section 14(c) of the Fair Labor Standards Act; it is called the “sub-minimum wage.” It allows employers of people with disabilities to bypass the minimum wage laws by obtaining what are called “special wage certificates”, which lets them pay less than the federally required minimum wage, as long as the worker has a disability. Beyond the loophole provision, the federal law actually requires government to buy certain goods and


services from these “sheltered workshops.” The law states the Federal government must buy from these pennies-per-hour shops in order to provide employment and training for workers who have disabilities or significant disabilities. Yet after more than seventy years of the law, workers with disabilities remain notoriously underemployed and under-trained. Few, if any, have ever gained a competitive wage or have even gained the motivation to acquire skills to get a competitive job. Some might argue that the system must be benefiting individuals with disabilities, simply because they have a job. But this fact,will be disputed in this article by an individual on the autism spectrum who is writing under a pseudonym, “Susan Jones”. She describes her own experience in the hidden economy of pennies-per-hour shops.

Susan’s Story About eight years ago, after two years of college, I found myself in a psychiatrist’s office. I had been sent there because I showed symptoms of depression and anxiety, and because I liked to explore my surroundings. I enjoyed going on long walks independently. I thoroughly planned these walks in advance, rather than wandering off, and I knew exactly where I was going every time. On occasion, I would forget to tell my family where I was going. Instead of being properly diagnosed, two psychiatrists decided I must have schizoaffective disorder, and locked me away in a state psychiatric facility. During the eight months that I was held there against my will and my family’s will, I was given the opportunity

to “work.” I put the word “work” in quotation marks, for reasons that will soon become evident. This was represented as part of my treatment; the staff claimed it would make me self-sufficient and independent. It was as if the independent young woman who had planned her own walks and her days sufficiently enough to plan and a manage a two-year college program, did not exist. I did not yet realize the “job” I had was part of a “sheltered workshop” program ran through the state psychiatric facility. The job was piece work for a subminimum wage. On some days, I was assigned to put earrings together. On others, I had to assemble boxes. We were constantly timed as we worked, and given a strictly limited time-span in which to assemble as many items as we possibly could before time was up for the day. For each item properly completed, I was paid a few cents, a nickel, a quarter, or anything in between depending on the item. Therefore, I made between 12 cents and $1.15 per day. Various companies that, presumably, needed this cheap labor in order to make a profit had sold the parts for the earrings, the boxes, and anything else being assembled to the state hospital. The state hospital sold the completed products back to these companies. Whoever eventually used the earrings, the boxes, or whatever probably had no idea that they were subsidizing a pay rate of pennies-per-hour. I could see I was being exploited and abused. What had been pitched to me as therapy or as an opportunity to build a better life, was opportunity for others, at my expense. Never in my life had I felt so degraded and violated. For

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a 21-year-old woman, straight out of college, “opportunity” and “independence” and a “productive life” were re-defined as putting together the component parts of things, for less than child laborers are paid in a Third World country. I should have asked many questions, but was unable to because the hospital sedated everyone getting this “opportunity”. I was sedated to the point that it was nearly impossible to drag my body out of bed in the morning and impossible to use my brain. I should have asked: In what way would penniesan-hour and manual assembly work prepare me for any competitive job market? Even through the fog of tranquilizers, I knew I didn’t belong in a psychiatric facility. Every night when I laid my head down to sleep, I thought about the injustice that had been done to me and other individuals with autism. As long as pennies-per-hour product assembly was the bottom line for some businesses, it meant individuals with disabilities would still be silenced and locked away against their will. Even if I had a mental illness, when did mental illness become a crime in this country? What illness is “treated” by violating and humiliating the patient? What does a human being gain from the “opportunity” to use others like a trained animal? During this time, I constantly imagined the world outside and everything that I was missing out on. Eventually, I spoke up to my treatment team and asked to be removed from the sheltered workshop. My doctor immediately decided I must be getting worse and increased my medication. Throughout my eight month stay, my family and I battled numerous attorneys and physicians to have me

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released. But the more I protested, the more firmly the doctors told me that I would not amount to much, the more I wanted to prove them wrong. Eventually, I was released into the care of an agency that placed individuals with mental health diagnoses in community residences. I was still on medication for a condition that I didn’t have and never had. This release was done on an assisted outpatient treatment order called, “Kendra’s Law”. Shortly after I was released from the hospital, I started college again, working on my four-year degree. A few years later, I not only graduated with my Bachelor’s degree, but I graduated Magna Cum Laude with Honors. Now I am attending a prestigious graduate school in New York City, where I have maintained a 4.0 GPA throughout my courses. I can’t help but wonder what would the doctors think now, if they knew? Would they be ashamed of themselves? I don’t know if they would, but I hope so. Also, after my release I saw a new doctor that said he couldn’t understand how such a diagnosis of schizoaffective disorder could ever have been given in my case, and took me off most of my medications. But if I didn’t have schizoaffective disorder, what did I have? The doctor noticed that I had trouble making eye contact and that I repeated a lot of things. He noticed that I stuck to routines and that I frequently went into meltdowns if the routines had to change. I was asked for the first time by a doctor, if I had ever been diagnosed with Autism Spectrum Disorder. The tragedy is for years, I had been misdiagnosed. But the other tragedy is that the mental enslavement at the state hospital


has caused many deep wounds and is so emotional that I must write this article under a pen name. The one thing that gives me the courage to write this article is the 300,000 other Americans, including many on the autism spectrum, diagnosed or undiagnosed, who are warehoused in some state psychiatric facility. Whether they work for pennies-perhour, or whether they cannot work at all, each is carefully and systematically silenced by a vast and mighty system in which the patient becomes either a warehoused item or a warehoused assembler of warehouse items, being seen as either a useless beast or a profitable machine. But they too can have the same opportunity I now have. I’m looking for real work and real pay where I use my abilities and skills. Our society can no longer be rooted in the thought process that Americans with disabilities would be only recipients of care, but can and will contribute to society, economy, and community. Susan Jones is now employed in the social services field and is in the midst of working towards a master’s degree in Clinical Social Work.

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Alisa Dror

Setting Expectations Early

Alisa Dror Ph.D., BCBA www.pinnacle-ct.org Dr. Alisa Dror holds a MA and Ph.D. in Special Education and is a NYS certified special education teacher. She is also a Board Certified Behavior Analyst (BCBA) and a Relationship Development Intervention (RDI) program certified consultant. At the Greenwich Education Group, Alisa is responsible for two roles: Clinical Director and Principal of Pinnacle School.

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School placements are a challenge for children on the autism spectrum. It can be daunting to find a school that can address the myriad of challenges that a child with autism faces in a way that is consistent with the child’s unique personality and needs. At Pinnacle, a Greenwich Education Group School located in Stamford, CT., children with autism and those significantly impacted by autism begin acquiring key building blocks of future success early on. As a college prep school, many of our students go on to traditional four year colleges, others attend community college, or vocational programs. The goal for all students is to prepare them for a life of success by creating a learning environment that empowers them with the skills they will need at every stage of their lives in school and beyond. Initially, when students come to Pinnacle, they learn that school can be calm, safe, and supportive, and that they can be actively engaged in creating a program that is as individual as they are. As our initial emphasis is on relationship building, children quickly develop a sense of trust, the crucial first step to enacting positive change. Our primary goal at Pinnacle School is to create opportunities to build a history of success. Often times many students with autism are saddled by societies thinking that they cannot succeed. Their self-esteem is diminished as they have had limited experiences of people believing they are competent. Without a solid foundation, many students are not expected to succeed. At Pinnacle, children learn that


we believe in them, will support them and will prepare them for a fulfilling future,� explains Pinnacle Head of School, Dr. Alisa Dror. The Pinnacle program focuses on understanding and appreciating each student from multiple perspectives and creating a completely specialized, individualized and integrated program. This program includes behavioral support, social cognition, counseling, executive function coaching, speech and language therapy, sensory integration, college and career counseling and a multisensory approach to the academic curriculum. Together, these components equip students with the skills they need to establish and maintain friendships, succeed in school, on the job, and become active members of their community. At Pinnacle, we believe that it is never too early to begin thinking about what the future will hold for our students and preparing them with the skills they will need to succeed as they transition into adulthood. The progression from student to adult can be daunting to all families, but can be especially challenging for individuals with autism spectrum disorder. Like many transitions for these individuals, this can be eased with careful planning and ensuring the appropriate supports are in place, and its best to start this planning process early. This involves equipping students with the skills they will need to develop relationships, participate in higher education opportunities, hold down a job and live as independently as possible.

In early grades, it is important that students are immersed in a curriculum rich in social cognition and executive functioning skills. Careful coaching and instruction in the area of social cognition will enable students to establish and maintain friendships and relationships, which are key to future quality of life. To be a successful student and member of the work force, it is crucial to develop executive functioning skills. Developing these skills promotes planning, organization, goal directed persistence, awareness and self-reflection. In middle school, the focus remains on the increasingly intricate nature of establishing and maintaining friendships. Additionally, students are given increased responsibilities and ownership over their studies and the choices they make and their role within the school and their community. Students also participate in a variety of different enrichment opportunities and this exposure enables them to develop interests, talents, and passions that increase leisure opportunities and can also lead to fulfilling careers. They are also given a variety of jobs based in the schools community. These jobs provide students with the first taste of what it is to have responsibilities that extend beyond themselves. As a student moves into high school, they begin weekly meetings with a college and career counselor who works closely with the student, their family, the teachers and the broader community. The focus of this work is to help the student and their family plan for what will come after high school, make choices regarding best fit colleges and identify what supports

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will be necessary to ensure continued success. Students are provided with a variety of job shadow opportunities and several internships that enable the student to experience careers that they might be interested in pursuing and to better understand the responsibilities that come with various jobs. These experiences also provide an opportunity for the school staff to assess the students current skill set and identify areas requiring further development during the course of their high school years. At the tail end of a student’s time at Pinnacle, the final components of the transition plan are set in motion. These involve ensuring that the student has strong self-advocacy skills and know how and where to find the support they might need moving forward. Key information is shared with the individuals who will form the new support system for the individual and trips into the community or college campus are facilitated to ensure that they know how to navigate their new setting.

Melissa Rwambuya describes how Pinnacle changed her daughter Olivia’s and her family’s lives and is helping ensure a smooth transition into adulthood. “For the first time, our daughter was welcomed despite her complicated history and maladaptive behaviors, and given the time she needed to adjust. The wonderful community of teachers was calm and patient and let her very slowly begin to build trust and develop positive relationships. As a result, she now can learn and have positive experiences. She now laughs at home and is happy to go to school. Pinnacle met our daughter at her level, and has capitalized on her unique gifts. I can’t imagine how different our lives would be without Pinnacle. Now she truly has a future and it comes into focus a little more with each passing day.” At Pinnacle, students learn that school can be safe and supportive, and that they can trust adults. They develop competence and resiliency and have positive experiences. With this foundation, and an eye toward the future, they are capable of amazing things. To learn more about the Pinnacle School and Greenwich Education Group, visit our website, http://pinnacle-ct.org.

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Autism Society’s Nationwide Network of Affiliates Growing Large While Staying Small In 1965, a handful of parents of children with autism joined together to create a network where they could exchange resources, problem-solve, understand personal struggles, celebrate individual successes and be their own best support system. When these founding parents shared “lessons learned” they made the journey with autism a little bit easier for someone else. Today, this vision remains a reality through more than 100 Autism Society Affiliates located throughout the country. Fueled by passion and the desire to support all touched by autism, the Autism Society’s Affiliate Network has grown throughout the years but still holds true to the belief that the best source of information and support comes at the grassroots level. When these local efforts feed national collaboration it is possible to bring about systemic change that truly benefits many living with autism. An Autism Society Affiliate is the place where: • Dedicated parents and professionals are available to provide information and services specific to a local area • People new to the diagnosis of autism can find valuable resources • Families can find encouragement, comfort and companionship in managing the years of growth and change • Local grassroots advocacy is organized for implementing change where change is necessary The Autism Society keeps resources in local communities; and that idea from 1965 still holds true today—by joining together we are better educated, more capable of overcoming obstacles and share a common voice in bringing awareness to our joys and our challenges.

Toge th we a reer, s tr o ng er.

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Melanie Johnston

Customized Employment: Not Just a Job

Melanie Johnston, M.A., SLP www.britesuccess.com Melanie Johnston is a specialist in autism and developmental disabilities, consulting with schools, individuals and corporations. She is a speech pathologist with a MA in Special Education, postgraduate education in Psychology and more than 30 years of experience as a therapist, educator, lecturer, and consultant.

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I recently had a parent tell me about the many challenges of Transition Planning she was facing, and more specifically, with how finding employment for her son was the hardest thing she has done since her son was diagnosed with Autism Spectrum Disorder (ASD). The reality is, job training opportunities are often very limited and often hard to find. When considering possibilities for employment, family members and professionals often find themselves caught within a cycle of looking for employment that is not suited for the individual on the autism spectrum. Job training and obtaining a job should be as individualized as a student’s IEP. As family members and professionals you must “think outside of the box”; look at what the individual has to offer an employer and not just what an employer has to offer the individual. Preparing a student for future employment takes thought, time and effort. The task is three fold: (1) developing community (2) discovery and (3) building capacity. In order for any individual on the autism spectrum to achieve success, the individual needs to be a part of a community. In an effort to develop community, families and educators need to begin defining what a “sense of community” means to the individual. Merriam - Webster defines community as: “a unified body of individuals” and “a group of people with a common


characteristic or interest living together within a larger society.” As youth with autism approach adulthood, it becomes essential to identify where young adults in the community are involved and at the same time nurture and develop relationships that are meaningful and long lasting. When individuals are part of a community they are recognized by others and are valued by their neighbors. Neurotypical adults usually begin to establish themselves in a community by identifying people and places within their immediate neighborhood where they feel comfortable and share similar interests. It is this very networking process that must be considered and encouraged for individuals with autism and their families when looking for meaningful employment. Building a community for each individual is empowerment and the first step toward building capacity. Explore every possible opportunity to get the individual with autism involved. Locate local recreation centers, coffee shops, and locations where small groups gather. Encourage the individual to pursue interests by joining special interest and civic groups. Embrace local business establishments and become a “regular” at the local grocery, bank, gym, or bowling leagues, etc. These self-determined acts allow the individual to engage with others and in the process learn and change, while using their network in the community. Once established, these community members can become the strongest allies for future job development that can provide meaningful long-term employment.

The next step in the process of obtaining any type of employment is discovery. It is essential prior to seeking any employment that the individual be involved in the discovery process (Callahan, 2004; Condon, 2004; Griffin, Hammis, & Geary, 2005) to clearly define “who” the person is and “what” are the ideal conditions of employment for that individual. This is more than person-centered planning, it is an assessment process that determines the natural supports for employment and inclusion including what is happening in the home, surrounding neighborhood, and local places of interest. Tapping into the strengths and interests of the person will guide the individual and family member to what is an “acceptable job” and lead to determining what the best “fit” may be, as well as what supports will be necessary to ensure long-term success. Remember as parents you need to be realistic and honest regarding the supports necessary for the individual to perform independently and have a meaningfully job in the community. Start by getting all of the players involved from the school to vocational rehabilitation. Having this be a joint effort among all parties who play an active role in the individual’s life will ensure that everyone is on the same page and working together to discover the best “fit” while keeping the individual’s interests and wants at the forefront. The final step in the process is to build capacity. Capacity involves providing opportunities for the individual to develop new skills in the “process of learning and adapting to change.” (Tandon, Yashpal,

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1995). When an individual participates in community opportunities, they are using existing knowledge and skills and in the process they become self-empowered, expanding existing knowledge and developing new skills. Community volunteer opportunities, such as volunteering at a recycling center, picking up garbage on the side of the road, sorting food within a local Food Bank, helping with a clothing drive are all examples of providing opportunities for an individual to develop new skill-sets, which increases capacity while also establishing connections within a community setting. Look at tapping into resources that are being used in the community, such as car and van pools for work, ride share with local taxi services, etc. But if there are challenges with accessing the community then what you do is mitigate challenges by utilizing resources

and maximizing strengths. For instance, If the person can’t take a bus, you find a job in walking distance. Then his transit issues are no longer an issue. Also, if a person can’t sleep at night, you get him a job that starts at 11:00 am not 7:00 am, so sleeping late is no longer an issue. If he paces, you find a job that requires a lot of pacing. These resources all serve to increase individual capacity and independence thus strengthening the individual for potential employment opportunities. When individuals with autism are exposed to an accepting, caring community while establishing skill sets targeting real employment. The outcome is amazing and this is when employment becomes more than “just a job” and the individual with autism is seen as a valued employee.

Some additional resources to assist in the process for developing employment potential include: • www.communityinclusion.org • www.imdetermined.org • www.dol.gov/odep/topics/CustomizedEmployment.htm • www.dol.gov/odep/categories/workforce/CustomizedEmployment/what/index.htm • www.dol.gov/odep/categories/workforce/CustomizedEmployment/case/index.htm • www.autismafter16.com • ruralinstitute.umt.edu/transition/ • www.centerforself-determination.com/ • www.leapinfo.org/ • www.ssa.gov/pubs/EN-05-10065.pdf • cirrie.buffalo.edu/encyclopedia/en/article/20/

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Merriam - Webster defines community as: “a unified body of individuals” and “a group of people with a common characteristic or interest living together within a larger society.”

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Dena Gassner

The Connection Process

Before getting the job, the connection process is critical. For the last six years, when operating my social work practice I provided an intense direct service to those with Autism Spectrum Disorder (ASD). Most individuals and their families arrived with an agenda—to prepare for, secure and maintain employment. Many of these individuals with autism had either been unable to obtain or sustain jobs. They often mentioned employer related issues; they reported that the employer failed to train them adequately, or was not accommodating or they struggled with workplace bullying or harassment. Others were self-blaming, believing they could have turned the prior situations around with more training, or more focus or continued persistence. Many, having endured tremendous repeated failures and simply did not feel employment was a reality for them. During several years of practicing, I discovered the following about individuals with ASD: • Most had entered, attempted and struggled with employment prior to a diagnosis. • Most had never learned how to solicit accommodations.

Dena Gassner, LMSW www.denagassner.com Dena Gassner is a nationally recognized service provider to teens and adults with autism. She is a member of the Autism Summit Team and the Governor’s Speaker’s Bureau and an active member on the Advisory Panel of People on the Spectrum of Autism.

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• Many did not know that accommodations were an option. • Those with the diagnosis did not concretely conceptualize their unique “expression” and manifestations of autism spectrum disorder as it applied to daily communication and adaptive behavior. • Many either underestimated the manifestations of their condition or were oblivious of their manifestations.


Without making these connections individuals with autism spectrum would not have been adequately prepared to adapt, address or deal with their challenges. And all were, inevitably, due to fail without the “connection.” In order to facilitate improved employment outcomes for individuals on the autism spectrum it is important to understand the four-step process to assist individuals in changing their perceptions and understanding of themselves through adaptation, accommodations, learning or disclosure. You see, you don’t outgrow ASD—you grow into it. Many individuals with ASD can live independently and work with the proper supports. The following is the break down of each step.

Step 1: What is Autism? I was always shocked and at times, really saddened at the number of individuals who were diagnosed fairly early, but had never had anyone explain why they experienced the world differently. As someone not diagnosed until the age of 38, I can tell you that existing in this world of not knowing, observing, mimicking, and honestly believing you are doing what others do and then failing repeatedly, for reasons that are not intangible, is deeply disturbing. Not having language to explain this to yourself, as well as to others is unnerving and distressing. The reasons this information is not shared with individuals who get a diagnosis very early is varied. Many believe the person is too young and may use it as an excuse. Also, many fear individuals will take advantage of the label and see it as a golden ticket for services or there

is just too much grief from a parent or the individual. Learning what autism really means— in a practical sense is life altering.

Step 2: How do I experience ASD? This process is different from the first, in that, the first step focuses on ASD as a diagnosis and the second step allows more the individual with autism spectrum to deal with it in their own head. We begin making that “Connection.” When coaching individuals with autism about their diagnosis, I create a “T” chart, with the person’s name at the top of the “T” (critical for ownership). On the left, is the diagnostic information from the DSM-5 such as Social Communication Disorder or Learning Disabilities or Motor challenges. On the right side, I use their diagnostic results (this makes it ‘real’) and their life experiences combined which helps the individual be introspective and helps them make the “connection” in their head.

Step 3: How do others experience ASD? This step can be scary, threatening and can sometimes bring up dark feelings. Sometimes it can create reactive behaviors. Perhaps everyone is still experiencing denial of the diagnosis and the individual with autism truly believes they don’t exhibit the manifestations of the diagnosis. Perhaps they fear that having autism means life is stagnant and never gets better. But many find step 3 is the most critical in order for the individual to live and to fully understand their diagnosis. The individual can be selfreflective in the following ways:

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• Identify what others see and perceive (and/ or misperceive); • Identify areas of possible change; • Identify areas where adaptation and accommodation can enhance a person’s quality of life and expand opportunities; • Be introduced to the broader autism community such that isolation and loneliness can be reduced or eliminated; • Prepare to know oneself such that advocacy can occur; and • Identify what to disclose and the framework for this disclosure. Also, looking at early childhood history can be helpful, especially, if there is a family member that can share that history where the individual on the autism spectrum does not feel threatened or criticized. Friends and professionals can sometimes be of value here, too. Often as an individual with autism and a professional, I’ve been able to help people see what others cannot see when discussing their diagnosis. Maintaining an open mind and heart is essential. The courage it takes to actively solicit feedback from those whom you love and trust is tremendous. It can be so wonderful to have the information needed in order to make a change in how the individual with autism sees life. But without critical information, the person has no way to feel like they are actually “connected” to a disability. It’s critical that the person with ASD remain open and able to hear both the strengths and the challenges as observed by others. This information has to be provided

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and received without criticism or judgment. It has to be realistic and honest. While it could be painful, it should be constructive and supportive.

Step 4: What do I do now? Adapt, accommodate, learn or disclose? Armed with objective information, the individual is now empowered to manage (remember we are growing into autism) their diagnosis of autism. Looking at their self with honest, realistic and positive introspection, the person now applies this information to their current circumstances. Do they want to obtain or maintain employment? Are they seeking a job where they may need to disclose they have autism? Or, do they want to participate more fully in a work environment? Dr. Stephen Shore’s book on disclosure “Ask and Tell: Self-

Advocacy and Disclosure for People on the Autism Spectrum” has always been a go-to for me, when helping individuals to identify what to share, how much to share and to whom they should share, as well as (possibly most important) what framework to use when disclosing. Do you disclose? Do you adapt what you can by yourself? Do you ask for an accommodation? For instance, how do you disclose to your employer you may have a light sensitivity. You can do it in various ways such as the following: • Disclose partially by explaining you get migraines with overhead lighting (NO mention of autism) • Disclose completely that you have autism and lights cause you distress


Maintaining an open mind and heart is essential. The courage it takes to actively solicit feedback from those whom you love and trust is tremendous.

• Adapt by wearing tinted lenses or a hat • Accommodate by asking for an office with natural lighting • Accommodate by choosing a job where you can work from home The point is, the employer has the information to either offer you the job or make the accommodation. So, step four is a never ending process and during the employment process you may often have to disclose your sensitivities so the employer can make accommodations so you can be successful.

Many individuals with autism spectrum disorder who disclose their diagnosis cannot imagine going back to the world that was lonely and painful. Disclosure with the proper supports equips the individual with autism spectrum to achieve to their maximum potential, no longer being in the world of the unknowing. Simply put, success starts with the individual and if you have self-determination as an individual with autism it will go a long way. Reach for the stars and believe in yourself and others will too!

This article is an adapted component of a larger piece collaboratively created by Dr. Lynnette Henderson of Vanderbilt University and Dena Gassner, LMSW.

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Emily Brooks

Me the Employee

Hiring someone with Autism Spectrum Disorder (ASD) to work with individuals who are on the autism spectrum is the ultimate test of accessibility and acceptance in the workplace. Sometimes you may see teachers crawl right under the table with the students when their own sensory limits are stretched to the max! Many say they do not disclose to most of their colleagues that they have autism because “certain people may try to use it against them.” Although employees with ASD share many traits with others on the autism spectrum, it’s important to clearly view them as who they are: important team members.

Empathy and Educators with Autism Spectrum Disorder

Emily Brooks www.emilybrooks.com Emily Brooks is a journalist, whose focus is on changing people’s understanding of gender, sexuality, and disability issues. She currently works with teenagers and children with special needs.

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For some adults on the autism spectrum, working with kids—with or without disabilities— is truly child’s play. Perhaps because autism is a developmental disability, adults on the autism spectrum sometimes interact more easily with children than grown-ups. For instance, Abby, a teacher with autism living in Australia, assists children ten and under at a childcare center, where she lives. “I understand children 100% better than neurotypicals,” Abby said. “I know why they say and do things differently because I still do them myself, and I can explain why they do it and why I do it the same. I play like a child and can communicate with children better. This is a big asset for me and the children.”Abby sees herself as the students advocate and


encourager while they are at the childcare center. She states many of her co-workers think these kids are just spoiled children and act out for that reason. I desperately seek to help them get the support they need while at our center because I understand the diagnosis and live it everyday.

how hard it is for both of us to be on the autism spectrum”) is motivated by understanding. Pity and understanding are completely different concepts—one hinders and the other helps.

Jackie, another adult with autism feels the same way too even though she lives all the way across the country. She is a one-on-one aide in a self-contained special education classroom at a local high school in the United States. Jackie states, “I think the strengths of being on the autism spectrum make it easier for me to understand why our students with autism act the way they do.” “I can truly understand being upset at routine changes, inconsistencies, lights, noise, and textures.” She sees herself as different from neurotypical aides and teachers in her classroom because they “get their feathers majorly ruffled” if students don’t listen. Jackie doesn’t “take it personally, because a lot of the time, she feels exactly the same!”, she emphasized. “I am just fortunate enough to have learned many coping strategies over the years, which I pass on to my students.”

Adults on the autism spectrum need sustainable employment and young people on the autism spectrum need compassionate educators and staff members. Letting the two needs collide inspires a solution. Why not give more adults with ASD a chance to work in educational settings with children with ASD? It is critical to realize individuals on the autism spectrum bring a unique skill set to the education arena. Family members, current teachers, and job coaches can help teens and young adults prepare for these careers by encouraging those who show an inclination for teaching or working with children to pursue this goal. Explore with them different careers that match with their skill sets and interests and help them pursue this path. There are all different ways of being involved in the education field that require different levels of training, higher learning, and abilities. Working in a museum, as a sport coach, at an art workshop, as a childcare provider in an integrated classroom or one-on-one at home, as an after-school or camp counselor, or in a public, private, or home-school program are just some of the many ways to get both males and the females involved in the field. Also, support employees on the autism spectrum by setting them up for success with basic work skills. Teach them how to handle office relationships, as

Abby and Jackie are two employees who bring great strategies to the workplace. They realized working with kids who share many of the same experiences—autism spectrum disorder, anxiety disorders, and sensory processing issues help them cope with their own issues a lot better. Jackie and Abby are empathy-informed educators. There’s a difference between sympathy and empathy. Sympathy (“It must be hard for you to be on the autism spectrum”) is motivated by pity, whereas empathy (“I know

Preparing Young Adults for Careers with Children

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well as how to complete more concrete tasks like keeping up with communication. Promote self-advocacy skills in employees on the autism spectrum and help them learn rights and how to assert themselves in the workplace. Employers can support employees on the autism spectrum by being patient and getting to the know the individual first not getting to know there diagnosis first. Employers may find that some educators with ASD have extreme talents working with kids or teens, yet totally miss the mark on administrative duties, team communication, or client and coworker interaction. Shuffling around responsibilities might be the perfect solution. Don’t think of this as giving a free pass; rather, it is using

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organizational resources wisely by assigning each employee the work that suits their strengths, leaving everyone more productive and happy. The simplest way to revolutionize special education is to hire more teachers and staff members who have lived, learned and experienced the very special needs being addressed in the classroom. Substance-abuse counselors often have gone through their own recovery process; survivors of mental health issues emerge into strong and caring therapists. Previously-homeless peer advocates work with people currently living on the street; breastfeeding support groups are run by leaders who have “been there and made it


through.” So why not use the same technique to help special education better serve its userbase by hiring individuals with disabilities? Envision a future of teachers and students with all abilities learning together. Imagine being a child who uses a wheelchair going to the first day of gym class and meeting a gym teacher who also uses adaptive mobility devices. How about going to English class where the teacher, who is a brilliant creative writer, has dyslexia? Or maybe, you are a student on the autism spectrum, and the paraprofessional helping you learn the new ropes on your assistive communication device also has ASD and is nonverbal?

It may seem idealistic, but I’d challenge you to take advice from Jackie. Jackie says “I think special education classrooms and employers, could be friendlier to employees by seeing autism as an asset and working with it, not against it. If our traits are used in the right settings, in the right way, we are dynamite and up to the task.”

Pe n n Stat e | On l i n e With the 100% online autism program from World Campus, you can: gain knowledge in autism spectrum disorders

study at times and locations convenient to you; there are no required visits to campus learn from the same nationally recognized faculty who teach on campus FALL & WINTER 2013 | AUTISM ADVOCATE Get started today by visiting www.worldcampus.psu.edu/AA

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Jennifer Laszlo Mizrahi

ADVOCACY 101: Enabling people on the Autism Spectrum to achieve the American dream

Jennifer Laszlo Mizrahi www.RespectAbilityUSA.org Jennifer is president of RespectAbility, an organization that works to empower people with disabilities to achieve the American dream. Through RespectAbility, Mizrahi works tirelessly to unlock the potential of millions of Americans who want to work and contribute to growing our nation’s prosperity and standing in the world.

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Since the Declaration of Independence which said “All men are created equal,” the American dream has been fundamental to our nation. Despite this, however, fully 70 percent of Americans with disabilities don’t have a job. It’s time for that to change -- and you can make a difference!

Here are 10 tips on how YOU can enable individuals with autism spectrum disorder to get real jobs at real wages. 1. Demand your rights. If you are a person with autism or a parent, prepare yourself or your child for paid employment or vocational rehabilitation (VR). From the infant and toddler program, all the way through the end of school rights at age 21, schools should prepare you or your loved one for “employment first.” Don’t settle for low expectations such as “dayhab” or work in a sheltered workshop that pays subminimum wage. Fight for your right to supports that will enable you to find the alignment between your interests, abilities and what is needed in the competitive job market. 2. Be proud and loud in telling people you want a hand UP, not a hand OUT. More than 10 million working age Americans with disabilities are living on government benefits in a cycle of dependency that undermines opportunity and hope. Yet most of us want to work. Take advantage of school opportunities, VR and excellent models, like Project Search, to get the training and supports you need. It can be really tough out there, but don’t give up. Go


online to find free programs and services that will start to meet your needs. 3. Work in an unpaid internship or as a volunteer by age fourteen. There is no better predictor of future economic success than early practice in the workplace. Ask your neighbors, friends, family and even people from your faith group to help you find opportunities to make a difference. Internships help you build skills and experiences that will strengthen your resume one step at a time. 4. Know the facts. Be an expert not only on autism spectrum disorder, but on issues that confront all people with disabilities. When we work together across the range of disabilities we can help each other. Key facts you should know include that 70% of workingage Americans with disabilities are currently outside of the workforce, in comparison to

28% for Americans who don’t have disabilities. The disability unemployment situation leads to high levels of poverty, isolation and financial dependency. By solving this problem we can make America stronger and better for everyone. 5. Hiring people with autism can help companies become MORE profitable. Companies are in the business of making money – and hiring people with disabilities can actually improve their bottom lines. Walgreens, AMC, Manpower and other companies have proven that they can and do make more money through inclusive hiring. These businesses have proven to society that with the right environment, an adult with autism will not just hold down the job, but be the very best at it! Its impact is sure to be far-reaching.

People hear the word “disability” and alltoo-often think of someone who needs pity, rather than someone with something to offer. But breakthroughs due to inclusive education, science, medicine, assistive technology and rehab are transformative. Individuals with disabilities have demonstrated unique and profitable ways to contribute to the workplace. It’s time for companies to take advantage of these changes and to hire people with disabilities for the abilities that they DO have. 6. Educate your elected officials. Recently, leading disability leaders educated sixteen Governors on employment issues facing individuals with disabilities. The National Governor’s Association issued an outstanding report on disability employment. As a citizen you too can join with other people who care about employment for people with disabilities. Ask for a meeting and go meet with your Governor. Ask him or her to make a measurable difference in the lives of individuals with autism spectrum disorder through employment. Suggest that they: • Host a statewide summit on disability employment that includes companies, people with disabilities, non-profits, faith leaders, media, government, and philanthropists. The goal of the summit should be to start a process that involves public-private partnerships and new thinking. • Promote progress through personal statements/op-eds/media events on this issue.

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• Make specific commitments to improving the numbers of people with disabilities who are employed in a real job for a real wage, as well as for disability owned businesses to be created and expanded through best practices. • Support a change in focus. “Employment First” thinking is the way to go. This means that public school and other services, including transition efforts, must be geared toward successful integrated employment opportunities. • Create a public-private partnership task force reporting directly to the Governor in order to achieve specific employment goals. • Hold those responsible for employment efforts in our nation to better outcomes for individuals with disabilities so they can achieve the American dream. You can find your governor’s contact info at www.usa.gov/Contact/Governors.shtml. 7. Use the right messages and remember to K.I.S.S. -- KEEP IT SHORT AND SIMPLE. Ensuring that individuals with autism are able to achieve the American dream is important. There are so many crises that our nation is facing these days and leaders face many demands; thus, they will give you very little time to state your case. So if you want to speak on critical issues keep in mind a key rule: K.I.S.S. – Keep It Short and Simple. • Individuals with autism want to work. • Companies can be more profitable when they hire individuals with disabilities.

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• People with disabilities bring valuable skills to the workforce. For example, more than 600,000 scientists and engineers currently employed in the United States have disabilities. Now, get ready to repeat yourself over and over, with slightly different variances to keep it interesting! You want to go back to your core three messages over and over. It’s called “message repetition” or “message discipline” and it’s not an easy thing to do. That’s because you will be thinking, “I’ve already said these things once, twice or three times. If I say it one more time the people I speak to will think I’m nuts or will be annoyed.” But scientific research has shown that on average a person needs to hear the same message at least seven times before it will be internalized enough to change their behavior. 8. Meet the print and TV reporters in your area who cover business or disability issues -and bring them the facts. Leaders and activists who care about individuals with autism should speak out and educate the media on these issues. After all, the media is the lens through which society sees individuals with autism spectrum disorder.

The Cosby Show and Oprah broke historic ground for race relations in our nation. All of a sudden African-Americans were in the living rooms of white Americans – and they became welcomed family members. What The Ellen DeGeneres Show, Will and Grace, and Modern Family did for LBGT issues caused tremendous change. Public opinion shifted so quickly that elected officials and courts practically fell over


one another to change their views. With 57 million Americans with disabilities, why can’t we get the change we need? Some people in the disability field have high hopes for the new Michael J. Fox Show where an incredibly well-known and popular actor, who himself has Parkinson’s, portrays a reporter with Parkinson’s who re-enters the workforce. Because Fox is so very well liked and talented, the hope is that viewers will root for him – and that they will see him as capable and successful. But we need more than just Michael J. Fox. Although 20% of Americans have a disability, there are still too few public role models. We need real-life employer “heroes” who will be proud to be showcased in the media. As disability leaders or activists, we need to identify and showcase local heroes – a company or organization that has been more successful because of their inclusive hiring processes. It needs to be a win-win pro-business or pro-employer story. It should also make the employer so proud of being associated with hiring people with disabilities that they will want to send it to their clients and make it a part of their own corporate publicity. That, in turn, can help inspire more employers to choose employees with disabilities. When business sections of newspapers, magazines and news shows tell real case studies of companies that are more profitable because of inclusive hiring of Americans with disabilities – that is when the floodgates of opportunity will open. But it needs to be business-to-business, employer-to-employer.

9. Network with business people and employers who matter. Speak to friends, neighbors, and colleagues. Keep your audience in mind. You never know who is listening or who your message might be shared with second hand. CEOs and other employers want to hear that inclusive hiring practices will make them money and help their bottom line. It might seem tricky to walk into a cocktail party conversation, but what do you want to answer when someone asks, what are you working on these days? Why not respond, “Actually, I’m very involved in advocating for people with disabilities to achieve the American dream. Did you know…” Remember to go back to your “message triangle” again. Here is an example of what you could say to a business person: • The majority of Americans with disabilities who are working-age want to work. They represent a talent pool of 10 million Americans who can make companies and organizations stronger and better. • Hiring individuals with autism can make companies more profitable. Nationally, many Fortune 500 businesses have found this to be true. When aligned with their talents and interests individuals with autism are more productive, loyal and have fewer workplace incidents than employees without disabilities. Here locally we have company (insert the name of the local company and local success story) they specialize in hiring individuals on the autism spectrum because they find them laser focused and excellent at critical thinking.

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• Hiring individuals with autism spectrum will help your bottom line. They need to be included in employment because of the talents they bring to the table. Their work and commitments to success can be a part of how businesses can compete against other countries. 10. Smile and stay positive. We have a lot to accomplish, but it can be done. The American dream is that each of our citizens – no matter their race, color, creed, religion or ability -- has a right to education and the opportunity to work so that they can create a better future for themselves and their family. Remember, work is about more than just money. It is about selfesteem and is a way to make friends and create shared experiences.

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In the past, people with disabilities didn’t have access to quality education. Today, with better access to education and technology, look at how individuals with autism spectrum disorder are ready to make companies even more profitable. Together we can and will make a difference. Get involved today, talk to a friend or family member, identify a promising employer to highlight, contact your governor and the media. There are 10 million Americans with disabilities who are ready to get off the sidelines and who help make America even stronger and better. But we need to get out there and put our future in our own hands. It’s our right and you can make a difference!


Nova Southeastern University proudly announces

Access Plus a college support program for students with autism spectrum disorder

Nova Southeastern University will provide services for students that will be more extensive than the current academic support and accommodations provided through the university’s Office of Student Disability Services. The program uses a positive behavior support approach and provides Academic Support

Psychoeducational Support Groups

A plan will be developed with individual accommodations to meet the academic needs of each student.

A weekly psychoeducational group session will be offered. The session will focus on information exchange, skill building, and self-reflection on the college experience.

Residential Support Residential advisers receive training in autism spectrum disorder and are trained to recognize the students’ social, behavioral, and organizational needs.

Volunteer and Other Career-Training Experiences

Campus Life/Social Support

Applicants must meet NSU’s admissions requirements as determined by the program of application.

Students in Access Plus will be encouraged to participate in extracurricular activities on campus, and, if necessary, they will receive support from Access Plus staff members.

The goal for each student will be to explore career opportunities during the last two years of the program.

For more information, visit us at nova.edu/accessplus or call (954) 262-7168.

04-094-13SAT


Allison Wohl

Advocacy: Fair Labor Standards Act

Allison Wohl www.thecpsd.org Allison Wohl is the Executive Director of the Collaboration to Promote SelfDetermination. Allison earned an MBA in 2002 from the College of William and Mary and worked for GE Capital and then two large consulting firms, doing management consulting at federal agencies. She is actively involved in the Down syndrome community and volunteers for local and national advocacy organizations and is the parent of a toddler who has Down syndrome.

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The Collaboration to Promote SelfDetermination (CPSD), an advocacy network of 18 national disability organizations, including the Autism Society, advocates for significant modernization of the federal adult system of services and supports for persons with disabilities, particularly those with intellectual and developmental disabilities. This year, CPSD has been working on opposing the current law under Section 14(c) of the Fair Labor Standards Act which allows public and private employers to obtain special certificates from the Department of Labor’s Wage & Hour Division to compensate workers with significant disabilities at rates below the current federal minimum wage based on the individual’s level of measured productivity. CPSD believes this archaic policy fuels unwarranted wage exploitation of workers with disabilities and reinforces unfair, arbitrary standards of productivity for workers with significant disabilities that non-disabled workers are not required to meet. This discriminatory policy forces hundreds of thousands of workers with disabilities into a life of poverty upon which they are chronically dependent on Supplemental Security Income (SSI) and other public benefits to make up the differential between what they should be earning commensurate with the position and the wages


of their colleagues and what they are actually paid. CPSD supports the implementation of a balanced, comprehensive approach to systems change, which includes as a key component, the eventual phasing out of subminimum wage and wage deduction provisions under Section 14(c) of the Fair Labor Standards Act. CPSD actively promotes Employment First efforts at the national and state level and works with the Department of Labor’s Office

of Disability Employment Policy (ODEP) in an effort to demonstrate to policymakers that supported and customized models of employment not only produce better outcomes for beneficiaries but also are significantly less expensive than are segregated subminimum wage “skill development” and prevocational congregate facilities. For more information and to take action, visit http://thecpsd.org/

Fair Labor Standards Act Section 14(c)

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Tonia Ferguson

Creating Possibilities

Tonia Ferguson www.Autism-Society.org Tonia Ferguson is Senior Director of Content at the Autism Society. She is currently working on content for the website, e-newsletters and social media channels. She is a parent of a child with Down syndrome and Autism Spectrum Disorder and has extensive experience working and training families and advocates on issues related to special education, family support, and transition.

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Employment can be difficult for anyone to obtain, but individuals on the autism spectrum often face the issue of employers’ ignorance and preconceived notions about what autism is and or what someone with autism can contribute to their bottom line. In business, the investment that drives innovation is talent. The knowledge, skills and abilities employees with autism bring to work each day are by far the assets that yield the most output over the long-term. Whether good economic times or bad, it’s the businesses opportunity to identify and recognize great talent. Businesses that are inclusive of individuals with autism – in recruitment, retention, and advancement – benefit from a wider pool of talent, skills, and creative business solutions. Additionally, work environments that are flexible and open to the talents of all qualified individuals, including those with disabilities, actually promote workplace success for everyone. There have been employment efforts by some well-known companies, such as Walgreens and AMC and the good news is there are more efforts coming in 2014 for individuals with disabilities.


In August, the U.S. Department of Labor’s Office of Federal Contract Compliance Programs (OFCCP) stated that the changes to Section 503 of the Rehabilitation Act of 1973 will be final in March, 2014. These changes are significant because it will no longer allow federal contractors and subcontractors to discriminate against individuals with disabilities in their employment practices, as well as requiring that federal contractors and subcontractors put into place affirmative action programs “to recruit, hire, promote, or retain� qualified individuals with disabilities. The issuance of the proposed new regulation has the potential to spur federal contractors, who employ over 20 percent of the U.S. workforce, to expand employment

opportunities for people with disabilities. The proposed regulation changes will adhere to the definition of disability, according to the ADA Amendment Act of 2008, which is an impairment that substantially limits one or more major life activities; a record of such an impairment; or being regarded as having such an impairment. This definition along with the affirmative action plan will require federal contractors and subcontractors to try to obtain at least 7 percent of their workforce with individuals with disabilities. This will open up many avenues that many have been denied due to discrimination and create equal opportunity for Americans with disabilities.

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Many with disabilities may not feel comfortable sharing with a prospective employer that they have a disability, but part of this new program is employees may be asked to voluntarily selfidentify whether they have a disability. The selfidentification or self-disclosure will be important in determining how many individuals with disabilities are applying for jobs in the federal government. If an individual is not comfortable during the pre-employment stage to disclose, they have the opportunity to do so after employment by a survey. Many of the federal contractors will survey employees every 5 years, anonymously, to determine whether the federal government is accomplishing its 7 percent goal. The information gathered from the surveys is confidential and will not be kept in the personnel file but stored in a data analysis file, solely for quantitative measurement to use for comparisons for reporting to the office of OFCCP. Also, another key policy change to the Rehabilitation Act of 1973 is the law requires mandatory annual self-assessments. These assessments are to force federal contractors to critically think about how effective their outreach, recruitment, and hiring efforts have been. Determining effectiveness will be difficult and slow at first because of the lack of data.

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The federal government will base effectiveness on the number of referrals, applications, and hires of previous years. If federal contractors fall short of their goals, they must create an “action-oriented program” to correct their efforts in maintaining qualified individuals with disabilities. The change to Section 503 of the Rehabilitation Act of 1973 is a needed policy change with the hopes of creating possibilities and significant improvements in employment outcomes for individuals with disabilities. Resources Excerpts information came from Robert “Bobby” Silverstein, JD presentation What

Federal Contractors Need to know About OFCCPs Proposed Section 503 Regulation, 24 Jan. 2012


AUTISM IS COMMUNITY

Every year nearly 50,000 families begin a lifelong journey with autism. Yours may be one of them. And while there is plenty to learn about autism, one thing is certain: families need a supportive community of experts, advocates and neighbors. Thanks to the Autism Society and its network of local affiliates, help may be right around the corner. It’s where people with autism, and the families who love them can find answers and join a caring, dedicated, understanding community that welcomes, nurtures and respects them.

If you or someone you love has autism, you’re not alone. Because Autism IS Community.

To read our inspiring “Autism Is...” stories and find an affiliate near you, visit www.autism-society.org TM

FALL & WINTER 2013 | AUTISM ADVOCATE TM


AFFILIATE HIGHLIGHT

The face of autism is changing, as the generation of children entering adulthood over the next five to ten years increases. As a society, we are particularly ill-prepared to deal with the probable explosion in housing, employment, and other critical services

The Face of Autism

needed by individuals on the autism

Autism Society of Indiana www.inautism.org

Unfortunately, while providers are getting

spectrum and their families. Autism is a developmental disability that, by definition, manifests itself prior to the age of three. better at screening for autism at a younger age, there are many individuals who are entering adulthood, who have recently been diagnosed with autism or another disability, and will need the same services and supports as those diagnosed in early years. In 2012, the Autism Society of Indiana (ASI) launched CareerAlly™, a new way of thinking about employment for individuals with autism who “fall through the cracks.” CareerAlly™ represents individuals with autism and other developmental disabilities who may have graduated from high school, college, and were employed at one time, but due to their autism were unable to find meaningful employment. CareerAlly™ is both a software program and wrap-around services to bring employee and employer together with appropriate supports over the long term. While traditional employment programs focus on keeping an individual employed for 90 days, CareerAlly™ is dedicated to being the go-between and provides training, offers suggestions, and ensures that there is truly a match between employee and employer.

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From the Employee Perspective: For anyone looking for employment, the number one issue is determining what kind of job or career is appropriate and will meet the needs of the employee. Questions asked can include: • Do I have the experience needed to fulfill the job requirements? • Will the salary from the job meet my needs on both a short and long-term basis? • Will I earn more than I am currently receiving from the State? • What do I need to do the best job I can in this position? • Will I get along with my manager / supervisor? If not, then what? • Am I interested in the job, or is it “just a job?” • Am I willing to take an unpaid internship if it’s a job I really want? Many times, employment specialists work to get a “job” for someone with autism or other disabilities, but it is not truly something that the person is interested in. Person-centered employment is the fundamental basis of the CareerAlly™ program.

From the Employer Perspective: Often times, businesses focus on job openings and job descriptions. Just because someone has the education or number of years in a particular job doesn’t mean they will fit into the culture of the business. CareerAlly™ helps look at the business from a slightly different perspective: What kind of person do we want working with us? Focusing questions on the characteristics of an employee and not on what jobs are available will help open the channels of opportunities for job-shadows, internships, contract positions, and full-time jobs. Employers often shy away from the idea of hiring someone with a disability because they may consider accommodations to take a lot of time, money, and focus off of the job at hand. However, CareerAlly™ helps them understand that an accommodation can be something as simple as the direction a desk faces, having a visual schedule on someone’s desk, or frequent short breaks. CareerAlly™ is focused on the development of strong relationships between the employee and the employer. Employment Allies are experienced working with individuals with autism and other developmental disabilities. Employment Allies recognize that for typically developing individuals, staying employed is difficult. For adults on the autism spectrum, it can often times be impossible.

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The outcome of the percentage match is then the starting point for negotiations between employer and employee, facilitated by the Employment Ally. The following are questions asked to the employee and employer as the software is matching:

Types of Employee Questions: • What kinds of employment have you had in the past? • Are you comfortable speaking with people you don’t know? • Are you comfortable initiating phone calls? • Are you comfortable asking questions? • Would you rather work independently or on a team?

CareerAlly™ is more than a “job website”. The software program uses a customized algorithm theory and individuals are matched to companies and businesses based on the percentage that his or her skills and background match the needs of the business. This is done in two steps: 1. Employee answers questions about their experiences, goals, and needs – and ranks them based on their importance (on a scale of 1-5) to the employee – to help them succeed in their job. 2. Employer works with the Employment Ally to answer questions about their company goals and needs, and what kind of people they want to work for the business and ranks them based on their importance (on a scale of 1-5).

• Would you rather work in a small/med/large size office? • How could an employer support you best? • Are you able to work without written guidelines? • How will you get to work (bus, car, ride with someone, etc)? • Do you have a High School Diploma or a Certificate of Graduation? • Do you have any Post Secondary Educational experience (technical school, community college, audited classes, etc)? • Do you have sensory issues? • In what environments are you best able to regulate yourself? • How do you prefer to communicate - with speech, pictures, a device, sign language, or your behavior? • What is your tolerance level for socializing? What is your tolerance level for interruptions?

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Types of Employer Questions: The employer (completely independent of the employee) enters information about the specific work that needs to be done, and about specific characteristics they are looking for in an employee, including: • How many hours per week will you need the employee? • Is the manager willing to develop a weekly work plan for the employee? • Number of employees? • What are the specifics needs? • What is the workplace culture like - formal, informal, tolerant, or strict? • What are the sensory conditions of your work site?

Employment Outcomes and Opportunities CareerAlly™ will use the site to see what employee might be a match with which employer based on the importance of each characteristic. From here, CareerAlly™ will be able to see the strong matches between a potential Employee and Employer, and then identify what accommodations may be needed to create a job opportunity. The CareerAlly™ program is fully customizable to any employment specialist, career development program, or business. The idea is simple: if you deeply know an individual and their “needs” ahead of time, plans can be made to deal with anything that comes up proactively, instead of reactively.

• Have you incorporated elements of Universal Design into workplace instructions and work stations? Do tasks require strong verbal or social skills? • Do employees have any privacy (e.g. office with a door that closes, desk with a shelter wall) or do your employees work in open, public, spaces (e.g. large room with rows of cubicles, open space with work tables and everyone can see each other for 8 hours)?

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AFFILIATE HIGHLIGHT Getting Past the Handshake How smart employers are learning that progress and innovative solutions are just some of the benefits of hiring individuals with autism. Autism Society of Minnesota www.ausm.org

Maria Auxiliadora Ramirez is 28 years old. She has a Bachelor’s Degree in Advertising. She is educated, motivated, detail-oriented, and talented. She also has Autism Spectrum Disorder (ASD). In 2011, after overcoming many obstacles, Ramirez was accepted into the Cargill Venezuela Engranados Training and Labor Inclusion Center. “Engranados” is Spanish for “engaged,” and during the one-year program at the center, Ramirez worked with a team of specialized instructors to learn how to become more engaged with office activities, as well as how to adapt behavior within the work environment. Ramirez is now an administrative assistant in Corporate Affairs at Cargill and continues to flourish. Rameriz says, “For the first time in my life, I made friends on my own, I was given the opportunity to succeed in my work life-they gave me the tools to be a winner. Today more than ever, I feel like part of this huge family called Cargill.” According to Cargill Venezuela, Engranados was created as an innovative way to incorporate persons with disabilities into the workplace. The objective of the program, Cargill says, is to develop job skills in people with intellectual, motor, visual and hearing disabilities through training. Along with other program participants, Ramirez learned about analysis of disability law and labor law in Venezuela, communication and social skills, leadership, personal development, self-esteem, as well as the Guiding Principles and Policies of Cargill. Ramirez also had the opportunity to take a course on Venezuelan sign language to communicate with her co-workers who are hearing impaired.

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Like Ramirez, some of those who successfully completed the Engranados program were offered jobs within Cargill. Other participants of the program may receive offers to work with other multinational companies, including Nestlé, with whom Cargill has formed strategic alliances. Helping employers recognize and value skills of the millions of people on the spectrum, like Ramirez, is one of the core messages that will be addressed by the Autism Society of Minnesota’s (AuSM) 3rd annual Autism & Employment Forum. This is being hosted by Cargill on Oct. 24, 2013 at its Hopkins, Minn. Campus. Ramirez, who will speak at the upcoming event, will highlight Cargill as one of a growing number of corporations in the U.S. and Europe that is recognizing and capitalizing on the unique skill sets that individuals with autism often possess: excellent long-term memories, high attention to detail and ability to excel at repetitive tasks. Walgreens, one of the largest drugstore chains in the U.S., also has one of the nation’s largest disability inclusion programs. Its distribution center model, launched in 2007, allowed management and partner organizations to look for people with the right attitude to learn and succeed, including individuals with disabilities, such as ASD. “We originally went into this project wanting to change the work environment,” said Walgreens senior vice president of supply chain and logistics Randy Lewis, “but soon discovered we were the ones who changed in dramatic and

wonderful ways.” Lewis, who was a keynote speaker at the 2012 Autism & Employment Forum, frequently travels around the U.S. to talk about how Walgreens’ management found that with a mix of training, technology and awareness, the active inclusion of individuals with disabilities as workers within its newest generation of distribution centers has helped them operate more efficiently and productively. In 2012, Walgreens announced that its goal is to fill 20 percent of its distribution center jobs with people with disabilities. Additionally, Walgreens says that more than 100 U.S. and global companies have visited Walgreens to learn how to initiate and sustain similar efforts of inclusion.1 Walgreens is not alone in the United States in these efforts. Minnesota-based companies 3M, Best Buy, and Medtronic are among top U.S. companies that have committed significant time and resources to exploring how they can best employ individuals on the autism spectrum. In May of 2013, German software giant, SAP publicly announced the beginning of a campaign to recruit people with ASD as programmers and product testers, drawing on skills such as close attention to detail and the ability to solve complex problems. “Only by employing people who think differently and spark innovation will SAP be prepared to handle the challenges of the 21st century,” said Luisa Delgado, member of the Executive Board of SAP AG, Human Resources, in a release issued by SAP.

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As an added motivator for some companies, the U.S. Department of Labor recently proposed a rule requiring federal contractors and subcontractors to have 7 percent of their workforces be comprised of qualified workers with disabilities. A number of states, municipalities, and corporations have begun to explore supplier diversity mandates that will require contractors to demonstrate a minimum level of disability inclusion within their workforce as well. While efforts by the government and private sectors represent progress, statistics indicate that there is work to be done. According to the Journal of American Academy of Pediatrics, roughly half a million children with autism in the U.S. will reach adulthood in the next decade.2 This statistic is complicated by the fact that only 33 percent of young adults with autism go on to employment or post-secondary education after completing high school, a statistic that is even lower than the employment rate for individuals with disabilities overall.3 “As young people with ASD prepare to leave school and enter the adult world of employment and self-sufficiency, employers are going to have to be prepared to work with this growing sector of our population,” said Jonah Weinberg, AuSM.“ Encouraging employers and potential employees to become educated about both the benefits and challenges that will come with their working relationship will be a key to success.”

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Because those with ASD may struggle with social interaction, employers and human resource professionals may see what they believe to be challenges during a candidate’s first interview. For example, a candidate may have difficulty maintaining eye contact while speaking, or lack the awareness that they are dominating a conversation. “But what is more important,” asks Weinberg, “hiring someone who offers a firm handshake and can be quick with a joke, or hiring someone who knows how to engineer the next generation operating system for your company? The handshake can always be taught later.” One of the decisions that individuals on the autism spectrum must make is whether or not to disclose their diagnosis. And, if they choose to disclose, when is the appropriate time to do so. While a disclosure is necessary to access potential disability accommodations, some individuals feel that a disclosure could hinder their efforts to gain employment in the first place. According to the U.S. Equal Employment Opportunity Commission, people with common mental health conditions have a right to a reasonable accommodation at work under the Americans with Disabilities Act (ADA). Still, disclosure remains a personal choice that must be carefully considered. In cases when an individual chooses to disclose his or her diagnosis, employers and employees are encouraged to work together to help make the work experience successful through a variety of strategies and tactics, including: identifying a co-worker who can act as a mentor for the new employee with ASD; using a job or


social coach to set up visual aids and schedules; having regularly scheduled meetings with the new employee at the end of each work day for feedback; and offering diversity training for the supervisor and the team the person with ASD will be joining. The responsibility of making the interview and job adjustment a positive experience does not rest solely on the employer. Dr. Barbara Luskin, Ph.D., LP, a licensed psychologist who has worked closely with children and adults with ASD for more than 30 years, encourages her clients to take social skills classes to learn the “soft skills” that are necessary for interviews and for daily social interactions.

These classes help participants learn how to fit into a group, take part in conversations, and ask appropriate questions. In addition to classes, Luskin says, role playing can be helpful. “Role playing may help an individual with ASD in social interactions with co-workers and communication with supervisors. Practicing different work scenarios may help individuals build self-confidence and become prepared for how to handle unexpected situations.” These types of skills, along with more specific interviewing and resume writing strategies, will be part of the focus of the Autism & Employment Forum’s Information Fair.

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Individuals with autism will have the opportunity to work with WorkForce Centers and Vocational Rehabilitation Services counselors as well as representatives from local university career and diversity offices to participate in job-focused instructional sessions and access information resources. The Forum’s two presentation sessions will be highlighted by keynote speaker Jon Ander Badiola, President of Cargill Foods Venezuela. Badiola, along with Ramirez, will speak about Cargill’s successful Engranados program and Ramirez’s experience in the program. Local employers and individuals with autism also will speak about their employment journeys. The Forum will include a leadership summit for senior executives and HR representatives from top Minnesota corporations, state agencies, advocates and individuals with autism. Scott Badesch, President and CEO of the Autism Society said, “the Employment Forum drew more than 750 employers, families, service providers and individuals impacted by autism. As a professional, I found it heartwarming to see how good work is helping to open so many new doors for so many.” “As a father of a child with autism, I now hope that the world my adult son will grow up in will be one of kindness and caring for him as an employee.”

More Resources To register for the 2013 Autism & Employment Forum on Oct. 24 at Cargill in Hopkins, Minn., please visit www.ausm.org.

Resources AuSM has published two audience-specific employment guides in partnership with the Minnesota Department of Employment and Economic Development and Vocational Rehabilitation Services: “Overlooked Talent: Investing in Employees with Autism”, written for employers by employers on the benefits of hiring individuals with autism; and “Unlocked Potential: An Employment Guide for People with Autism”, written to inspire and motivate individuals with ASD to seek meaningful, successful employment. The DVD series and employment guides are available from AuSM upon request. Selected books on Autism & Employment can be found in AuSM’s Amazon.com Bookstore. Visit: http://bit.ly/14zV884. Meet the Future Face of Employment: Individuals with Autism Spectrum Disorder in Technology Fields: http://mn.gov/mnddc/asdemployment/index.html

References 1. http://www.walgreens.com 2. http://pediatrics.aappublications.org/content/ early/2012/05/09/peds.2011-2864.full.pdf 3. U.S. Dept. of Education http://www.nlts2.org/index.html

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The Campaign for Disability Employment

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Autism Society Corporate Membership Program - 2013 Join a Community of Caring

TM

The Autism Society is the nation’s largest and oldest grassroots autism organization helping over 1,000,000 individuals and family members each year. The mission of the Autism Society is to improve the lives of all affected by autism. We do this by working with families, professionals, and individuals to assure that each person with autism is provided the opportunity to achieve the highest possible quality of life. TM

Nationally At the national level, the Autism Society is a leader in national advocacy and services to help the over 3,500,000 individuals in our nation as well as their family members who are impacted by autism. With a CDC defined rate of 1 out of 88 children now being diagnosed as living with autism, the need for a strong and supportive Autism Society has never been greater.

About 1% of children have an ASD 1 in 150 children

Locally Throughout the nation, over 100 local and state Autism Society Affiliates are serving people each day by providing support, information, referral services and community advocacy. Each local affiliate adheres to the highest level of quality standards assuring transparency, accountability and responsiveness.

Membership

1 in 2,000 children

Before 1990

Given the staggering increase in the rate of autism, it is reasonably assured that your organization is employing someone who is impacted by autism. The Autism Society is proud to offer our Corporate Membership as a means to support your employees; providing them a place to turn for support, guidance, and community.

Mid 1990s

Mid 2000s

Most Recent

Autism prevalence through the years via the CDC

There are many ways to support the Autism Society, but a very important means of support is through membership. By being a member of the Autism Society, an individual is supporting our work, receiving direct member benefits, and helping us achieve our mission.

Corporate Membership

1 in 500 children

2008 2007 2006 2005 2004 2003 2002 2001 2000 1999 1998 1997

Prevalence of Autism increased

289.5%


Through a Corporate Membership of the Autism Society, organizations and their employees are provided the direct services of the Autism Society and its network of affiliates. We hope to assist your employees who have family members living with autism, employees living with autism, and to help improve your company’s ability to address autism in the workplace. Becoming a Corporate Member provides assistance to the employees and families affected by autism, while also being a smart business decision for the employer.

This program provides,

The labor force participation rate for individuals with disabilities is only 20.5%

For the Employee: 1. A yearly membership with the Autism Society. 2. Access to the Autism Society’s AutismSource™ Information and Referral services. AutismSource is both an online database and bilingual contact center that assists thousands of people a month. Our call center is staffed by trained professionals Monday-Friday, 9am to 9pm and Saturday and Sunday, 9am to 5pm EST. 3. Access to the longest running national magazine on autism (Autism Advocate) produced and published by the Autism Society. 4. Regular updates and information on activities of the Autism Society, government programs, proposed legislation, and efforts to advance a nation of responsiveness for all living with autism. For the Corporate Member: 1. Relief of employee stress resulting in improved morale and productivity. 2. Assistance to Corporate Member’s Human Resource Department on issues related to autism in the work place.

20.5% The federal government defines labor force as the sum of the employment and the unemployed. U.S. Department of Labor.

Nearly

46,000 families will receive an autism diagnosis this year. Autism Society estimate based on CDC and U.S. Census numbers

3. Immediate eligibility to win the Autism Society’s Employer of the Year award. Past winners include AMC Theatres, Walgreens, Best Buy, and the Philadelphia Phillies. 4. Recognition of your Corporate Membership to our growing community demonstrating your company’s commitment to supporting the mission of the Autism Society. 5. A unique mark provided by the Autism Society designating your organization as Corporate Member. We welcome you to display this proudly.

If your organization is interested in a becoming a Corporate Member of the Autism Society, please contact Scott Badesch, President/Chief Executive Officer at sbadesch@autismsociety.org or via phone at 301-657-0881 ext 9018.


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