My home state of Illinois still has seven state-run institutions for people with intellectual and developmental disabilities (I/DD) open. In 2018, 37 states still have institutions where people with I/DD live institutional lives away from their families and communities. Some may recall the horrible investigative reports that showed the terrible conditions in institutions, but fail to realize that they still exist — and that state and federal government dollars are still funding them. The Arc of the United States was founded by families like mine trying to eliminate the need for those institutions, and to get their family members with disabilities back home and included in their communities. While we have come a long way, there is still much to do from state capitals to DC.
The families that started The Arc movement were the examples that my parents emulated when they fought to ensure that my brother Chris, who had been diagnosed with autism, was the first student with the diagnosis included in our school district in the early 90's. The self-advocates — the beating heart of The Arc — are the ones who my brother is following in the footsteps of when he advocates in our state capital for better wages for Direct Support Professionals, or presents at local school districts about how to better support students with autism. The policy staff of The Arc of the United States, who I am honored to call colleagues, have been fighting this fight for decades — some since before my brother was even born.
The legacy of The Arc of the United States was just one part of the reason I was glad to join the team as Director of Rights Policy almost three years ago. But more than that, it was about being a part of a movement that was bigger than any one person, family, or diagnosis. Since January of 2017, I have truly seen the power of that movement. This past year has been a whirlwind. I stood in awe at every rally, event, presentation, hearing and protest, at those who were willing to put their bodies on the line — screaming, shouting, and sharing their most personal stories about why Medicaid matters in their lives and the lives of their loved ones. With my brother's permission to share his story, I was sometimes part of that large chorus that ultimately was able to stave off the attacks last fall and SAVE MEDICAID… for now.
The "for now" part is what keeps me up at night. As a family member and advocate, it is also why it is more important than ever that we grow the movement to ensure that the general public understands why inclusion and acceptance matters, and that they join the fight to ensure the progress that we have made in the disability community is not stalled by conversations of "cost savings" and "reductions." We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about what Medicaid is and does. On the policy level, we have to talk to state and federal legislators about the fact that the Federal Medicaid law which we fought so hard to save needs a face lift. Right now, services in institutions, nursing homes, and other more segregated settings are mandatory — while home and community-based services (HCBS) are optional under the law. So, all those billions of dollars of cuts would have cut those community services — while those seven institutions in my home state of Illinois would have stayed open.
These are complex issues, but the basic fact remains that everybody benefits from people with disabilities being part of the fabric of their communities. That doesn't come by keeping people locked away in institutions, or segregated into different classrooms. It comes through conversation, inclusion, and acceptance that we are all better together.
Since it is also Autism Acceptance month, I also want to talk about my brother Chris and why inclusion and acceptance matters in our lives. You see, it is my brother's voice that I hear during every tense Capitol Hill meeting, frustrating debate, and late night in the office. This is a little ironic since my brother doesn't use his voice to speak. Chris types to communicate, and this really only started when he was 21 years old — almost 20 years after he lost his speaking voice. At the time when he started sharing the "20 years of observations and opinions," my grandpa asked him how he had learned to read and write. And Chris answered with his signature sarcasm, that he "learned to read in his classroom like everyone else". That is why inclusion matters, that is why acceptance goes light-years beyond awareness. If my parents — like all the parents who started The Arc — hadn't insisted that Chris be included with his peers, who knows if he would have ever found his ability to communicate. That would have been a loss to our family, our community, and the world.
Chris and I are fighting, and we hope you join our movement today, so that we can continue the fight that started The Arc of the United States over 65 years ago — the fight for acceptance and inclusion in all areas of life for people with disabilities.
In honor of National Disability Employment Month, we interviewed Max, a member of The Arc of the Midlands. A young man with autism, Max's passion for technology recently led him to pursue and ultimately secure a position at the technology giant Microsoft. Let's catch up with him to see how his journey to one of the top employers in the world started as well as learn some of his secrets of success.
Max's path to competitive, integrated employment began at The Arc, and its affiliate, The Arc of the Midlands in South Carolina. Tapping into the parent organization's The Arc@Work IT training program, Max was quickly connected with two additional organizations: first, Specialisterne USA, the U.S-based affiliate of Specialisterne Foundation. Specialisterne USA mission is to create 100,000 jobs for people with autism in North America, and second, Provail, a Seattle-based agency that assists businesses in hiring and training qualified job seekers with disabilities. Armed with these resources, Max embarked on a hiring process that would lead to the opportunity of a lifetime. He first participated in phone interviews with The Arc of the Midlands, then completed some reading tasks from Specialisterne, and finally, submitted a short project demonstrating his programming abilities. Once this stage was completed, Max flew to Microsoft headquarters in Redmond, Washington where he participated in a two-week evaluation period. During this time, he completed short programming assignments, as well as was informally interviewed by several hiring managers. This gave Max the opportunity to showcase his skills and assess fit with various Microsoft teams.
On the last two days of the evaluation period, Max had formal interviews with two hiring managers where he fielded more technical questions. Normally, this would be followed by an additional swath of analytical problems. But, in one of the interviews, the manager voluntarily waived this additional step, explaining "…it was unnecessary…to do a whiteboard problem….as [he] had assessed [his] skills between the informal interviews and reviewing [his] coding assignment". This manager further advised "The whiteboard problem is one of the most widely used ways to assess a software engineer's problem-solving skills, and skipping it (especially at Microsoft's level) was a complete shock". Even Max's fellow candidates were amazed!
Shortly after the conclusion of the evaluation period, Max learned that both hiring managers extended a job offer! After much consideration, he accepted the position in the Core Operating System – Windows Fundamentals Division, primarily because of his interest in operating systems development. Shortly after officially accepting, Max eagerly began the on-boarding process.
Max now spends his days coding and engaging in problem solving sessions on Microsoft products. Often, this involves a number of cross-team meetings and lengthy discussions of new features. It is these moments that excite Max the most because he loves "designing and implementing complex solutions to complex problems". For him, it's "like solving a puzzle".
Autism is not something to be feared, nor is it solely defined by medical jargon or categories. It needs to be accepted as the way an individual thinks, feels, and expresses themselves; nothing more, nothing less. An individual who happens to have a diagnosis needs to be accepted as a human being first and foremost. The expression of their autism may come in many forms and whatever that may look like, it needs to be accepted as part of the person and part of what motivates them.
If we start by accepting autism as part of the person and not let their autism be what defines them, then we can be free to be who we want to be. I have taken on the challenge and embraced my autism. I do not let it run my life; therefore, I have broken some barriers and set an example that individuals on the autism spectrum can be accepted for who they are and what they can contribute to society. Let's celebrate not only acceptance but that autism is not a disability but differently abled. Think positive and find unique solutions to problems, always remember this; there is more than one way to do things and no one correct way to do something. By accepting autism, individuals are embracing and empowering themselves to be who they always knew they would be.
Ever since my diagnosis, in my mid 30's, I have learned so much about myself and how it is possible to influence others just by being there and listening. Sharing my story has made such a difference in my life and now I have a new found talent that I would like to tell others about. As part of my job as Director of Autism Now, I was a contributor for Talent Scout, our toolkit for employers, that reflects the opinions and voices of people on the spectrum. I will also be available to do consulting services as well. That will include such things as being a public speaker at conferences, giving presentations, being a leader in the autism community, as well as telephone or e-mail consultations. For more information on that I can always be found at agoodman@autismnow.org, info@autismnow.org, or 202-600-3489.
Acceptance is what it's all about – accepting someone for who they are, for the difference they can make in someone's life, and accepting them as a human being first. Always a person first and never a label or diagnosis; don't fix what isn't broken, let the person with autism tell you what they need and want, and always let them make their own choices for themselves. That's what it means to accept autism, being free and being me.
Amy Goodman is currently the Director of Autism Now at The Arc of the United States. She has an undergraduate degree in Early Childhood Education and a Master's degree in Special Education with a minor in autism. She is an individual on the autism spectrum who enjoys helping others to understand what it is like to live with a developmental disability and has a passion for helping others in their journeys with their children with unique abilities to live life to the fullest as independently as possible. She likes to be a self-advocate and fight for the rights of individuals with intellectual and developmental disabilities as time permits. She also has a passion for reading, crossword puzzles, square dancing, and parrots and owls.
In the recent past, Jerry Seinfeld had mentioned that he might be on the autism spectrum and then he had to backtrack and say he wasn't on the spectrum. Because of a play he saw that was about autism, he thought he had some connection to it. That is all fine and dandy, but what about individuals who have been diagnosed with it as an adult and live with it every day. I just wanted to say that autism, ASD, or Asperger's is nothing to be taken lightly. It is a developmental disability that affects how one thinks and it is the reactions that one has to the environment around them.
To me what it means to be diagnosed as an adult is this: It meant I finally found what I had been searching for, for more than 30 years. It meant closure of something looming over me. It meant satisfaction in me and my life in general. It was a relief to put a name to my idiosyncrasies and it gave me understanding and wisdom.
I was able to take responsibility for my life, make new plans on what I wanted to do with myself and I was able to put the pieces together and step through the next hurdle in my life. It gave me freedom to explore new opportunities and to see myself for who I am. I had a new found confidence and I realized I'm not different, that I do have a purpose and it also allowed me follow my dreams and go in a totally new direction.
It opened my eyes and washed away all my guilt that I had about myself and my abilities; therefore I was able to move forward with my new life. It gave me a whole new understanding of myself. The understanding was this that I am who I am and I am not bad, diseased, or broken. I have a name for all my challenges but that it is not a label, it is not bad, it just is. It is part of who I am and it will always be with me, but in the end does it really matter that I am on the spectrum? No, it does not. I am a human first and I have a name, Amy, autism or Asperger's does not define me. So, I stopped obsessing over it, embraced it for what it is and I used my characteristics to help me to identify my next steps.
I took those next steps and I found that I am lovable, capable, and that I can do better than what others thought I was capable of doing. In fact, I have expanded my horizons and have even impressed myself with what I can do.
It means you know who you are, and it helped me to identify what I needed to do and by having this new found knowledge I was able to help others to see the light as well. Individuals with autism and Asperger's are capable, bright, and able to achieve all of their dreams and then some if they just put their mind to it. Some individuals may need more help along the way than others, but don't ever let anyone tell you "you can't" because the reality is you can.
Dream big, live life to the fullest, and be happy. Do what you are meant to do. Being diagnosed as an adult gave me inspiration to do something, that something was go to graduate school and get my Master's in Special Education with a minor in autism, so do something and make something of yourself. It can be done, if you have hope, happiness, and faith and you will succeed. Don't give up, always remember to smile and remember this: No is not the answer. Yes is always the answer and what was the question? Oh I guess I forgot oh well it doesn't matter because the answer will always be what you want it to be. That is yes, I can Yes, I will and Yes, I did. I conquered it and now that is all I have to say.
I am writing to express my continued gratitude for the Wings For Autism event held in Anchorage, Alaska.
Our 11 year old son Jack experiences high functioning autism, which he was diagnosed with at four years of age. While Jack did fly at ages 5 months and 9 months respectively, in his memory he has never been on an airplane, which raised concerns for us, since we have scheduled air-travel this summer.
The Wings for Autism experience was far beyond any of our expectations (our family of 4 attended). The attention to detail, real life/real time airport experience of obtaining tickets, line waiting, Transportation Security Administration (TSA), airport exploring, more waiting at the gate; it was all so needed, and so appreciated. The time on the aircraft was more than we could have ever hoped for, between the taxiing and "cruising altitude" beverage/snack service, the crew going through their regular motions/speeches and the pilots coaching us through the sounds and motions of the aircraft… truly exemplary. To add to this, the generosity of all of the hands at play, from the folks getting us through the lines, to the TSA, to the airport staff, to ground crew, to the flight staff and of course the pilots, The Arc of Anchorage, Ted Stevens International Airport for handling the logistics and security of a "mock" boarding and flight on their active airstrip, not to mention all of the volunteers and hours/dollars funneled into this event is staggering and to know that this was all done for our kids, our families to have a better experience, well, it is so humbling and overwhelming to me it makes me want to cry.
As for our Jack, he struggled. And it couldn't have been a better place, better environment, FOR him to struggle. It gave me a good glimpse of what I might see and might expect this summer. Jack did very well for about the first 1 1/2 hour (noon to 1:30), and then he started to lose his patience. The noises (especially from children), the waiting, the MORE waiting, it set him right to the edge. (It is worth noting that there are interventions I could have used/will use in the future, but I wanted him to have a "rougher" experience for this practice run so I could really have an accurate view of where I needed to focus for our trip this summer; also, I knew this was the time for him to have it harder, rather than the "real" time.) When we boarded the aircraft and sat down in his window seat, he began to emotionally shut down. He started to have what can best be described as a panic attack, breathing fast and clenching his hands, and said he "didn't like this anymore" and "wanted to get off/leave". I told him we could shut the shade on the window, which we did, and I just quietly talked him through it (I figured he would want the window, but next time maybe I'll seat him elsewhere). I told him that the best thing we could do was to sit in the uncomfortableness and be uncomfortable, and eventually the anxiety feeling would start to come down. I reminded him that if we "ran away" from this moment it would only be much worse the next time (I personally have diagnosed Obsessive Compulsive Disorder, and this is true for me; I try and use this approach with Jack as well), and I knew he didn't want to miss out on travel and experiencing new places like other people.
Jack eventually pulled the shade back up, and about 20 minutes into it, he calmed a bit and smiled, and said he felt better. He kept wanting reassurance over and over that we weren't going to take off. He is terrified of motion sickness and throwing up, and he kept talking to himself about how he'd be okay, and how he probably wouldn't throw up on the real trip this summer. He checked out the bathroom as well. While he never fully relaxed, all in all it went very well. When it was all said and done, he claimed it was "awesome" and said on a scale of 1-10, it was a 10 :).
Jack still has worries about taking off/landing, and getting sick on the plane. We will cross those hurdles as they come. Yet, this experience with Wings For Autism gave us something we normally could never obtain, which was practice in an airport and on a real aircraft. Who gets to have that?!! I don't think I can fully punctuate how important and valuable this experience was to our family and to Jack; all I can say is thank you, and hope it is a program that can be repeated so more families can benefit like we did.
One thing that all parents keep in their proverbial back pocket, ESPECIALLY families with special needs children, is the ability to leave/exit a situation if needed. If the event is too stimulating, your child is having a meltdown, the event is too long, there is too much noise, etc., YOU CAN LEAVE. It is a safety net, and benefits not only your child, but it is also executed in consideration for the people around you. A plane is probably the ONLY environment in which you CANNOT leave. You can't even really move away. Knowing this certainty can be figuratively paralyzing for the parents; what are you going to do if things go poorly? All you can do is the best you can, but that one ace-in-the-hole of leaving the situation is off the table. It is enough to keep some of us from wanting to knowingly put ourselves and our kids in that potential situation. That is the way it has been for us. I would be remiss if I did not admit my own anxiety about air travel this summer, but I know it is something we must rise to and experience, and I will do everything I can to support it going as smoothly as possible for both Jack and for those around us. It is a tall order. Thanks to Wings For Autism, it is now more attainable.
Special needs, and all the trimmings that come with it, can be difficult, even impossible, to understand. The good thing is, people don't need to understand. On an empirical level, it is too much to even ask. To raise my expectations and hope for someone else to understand what our life is like, what Jack's life is like, might be asking something that person cannot give. However, everyone is capable of giving compassion. Compassion does not have to in concert with "getting it"; compassion can stand alone. And when a parent like me or even Jack himself receives a knowing look of compassion, a gesture in kind, a gentle word or nod, an extension of patience, it is such a gift. That is the empathy that nourishes and gets us through that moment, that hour, that day, or that week. It satiates in a way that even I cannot express, and it keeps me going. It keeps Jack going. And for this, I will always remain truly grateful.
For this opportunity, we remain in your debt.
With the CDC declaring that 1 in 68 children may be impacted by autism spectrum disorders, it's a fair bet that each one of us knows someone with autism or someone who has a family member or friend with autism. That's why it's important to dispel all of the myths and misinformation to understand and accept what having an ASD really means. And that's why The Autism NOW Center exists, to weed through the volumes of information out there and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.
To promote awareness and acceptance, we invite you to view and share a new video about Autism NOW and learn more. Also, we encourage you to join in the conversation! Throughout April, we will publish the personal stories and perspectives of people with autism on the Autism NOW blog to generate discussion about autism awareness and acceptance. We invite your comments here and on our social media channels using the hashtag #AutismAware.
Washington, DC – Today, The Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) continues to rise. The new rate of 1 in 68 reflects a 30% increase from two years ago when the CDC released data that 1 in 88 children has autism.
"The numbers are staggering – in 2008, the CDC reported 1 in 125 children had autism and related disorders. Today's data showing nearly double the prevalence since then emphasizes the immediate need for better services and supports for people with autism and their families. Autism is clearly part of the human condition and people with autism live in all of our communities. While we have made progress in recent years to raise awareness and improve services and supports for individuals with autism, it's simply not enough.
"From protecting the Medicaid program – the single largest funding source of services and support for people with autism and their families – to reauthorizing the Combating Autism Act before it expires in September, we have a lot work ahead of us on Capitol Hill to ensure that people with ASD are fully included in society and that ASD prevention, surveillance, public education, and professional training continue apace. And as a grassroots organization with nearly 700 chapters across the country, The Arc will continue to lead the way and work with people with autism to support their full inclusion and participation in the community throughout their lifetimes," said Peter V. Berns, CEO of The Arc.
The Arc runs Autism NOW: The National Autism Resource and Information Center, a federally funded resource for people with ASDs and their families. The online center aims to help people separate fact from fiction when it comes to autism. In addition, Autism NOW provides trainings and information and referral services.
The Arc is also running a national airport rehearsal program for people with autism, other developmental disabilities, and their families called Wings for Autism. Based on a program launched by one of our local chapters in Massachusetts responding to the needs of a family looking to take a trip to a theme park, the program is a full dress rehearsal for air travel, including the process of ticketing, security clearance, boarding, and at some locations, taxiing on the runway.
And earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its successful model for recruiting, assessing, training, placing and supporting people with autism in jobs in the tech industry in the United States. Specialisterne creates meaningful employment for people with autism by building relationships with technology companies that need employees whose skill sets match the characteristics of many people on the autism spectrum. Chapters of The Arc are working with Specialisterne to serve tech companies, such as SAP and CAI, which are eager to employ people with autism as software testers, programmers, data quality assurance specialists and other technology positions.
This viral video featuring Megan Squire, a high school senior with Down syndrome, was a finalist in a Good Morning America contest (which challenged teens from across the country to make their own music video set to Katy Perry's song "Roar.") Produced by students at Verrado High School in Buckeye, AZ, the video depicts Megan's quest to become a cheerleader. Although the video did not win, Perry loved the video so much that she invited Megan to attend the American Music Awards as her date!
In November, a customer yelled at Chris Tuttle– a Wegman's employee who has Asperger's syndrome– for working too slowly. Afterward his sister posted about the incident online, and it quickly went viral: As of now, the post now has over 150,000 likes, and the community has rallied to support Chris.
An organization created a series of mannequins based on real people with disabilities– The beautiful process was documented in this video, and the mannequins were placed in store windows on Zurich's main downtown street.
He crossed the finish line hours after the winners, but Jimmy Jenson still set a record at the ING New York City Marathon: He's the first person with Down syndrome to complete the race.
Jenson, who is 48 and from Los Angeles, ran all 26.2 miles with his friend Jennifer Davis at his side. The pair met 12 years ago through the program Best Buddies, a group that aims to connect people who have intellectual disabilities with people who do not. When they met, neither of them were runners. But that changed when Jenson suggested they run a 5K together. Since that first race, the pair have run a number of races together, including the Los Angeles marathon this spring.
Karla Begley, is the mother of a 13-year-old boy with autism, Max, who was the subject of an anonymous hate-filled letter that made headlines around the world. The blog Love That Max posted her response.
"A lot of people told my parents that they were very, very sorry. I guess they didn't know then just how totally awesome I would turn out to be." Tim is a business owner, running the world's friendliest restaurant, located in Albuquerque, New Mexico.
Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism, to promote a more inclusive, compassionate world where differences are celebrated. "It's about reinterpreting beauty. It's about having an opportunity to see beyond what you're told and what we're forced to believe that that's beauty." – Photographer, Rick Guidotti, founder of the project.
The couple relaxes at home after work. Photo via Washington Post.
"You know that scene in 'Dirty Dancing' where Baby meets Johnny for the first time? It was kind of like that." One couple's love story.
Bonnie & Myra Brown. Photo via NPR.
Bonnie Brown, who has an intellectual disability, has raised her daughter Myra as a single mom. They gave us a window into their mother-daughter relationship last February on NPR's Morning Edition.