This movie explores experience of autism rather than cause

by Elsa Remak

Please join me in welcoming today’s guest blogger, filmmaker Jill Jones. Jill is the producer behind SPECTRUM: A Story of the Mind, a thought-provoking documentary about autism and sensory issues.

by Jill Jones

When I first told friends I was making an autism documentary, their eyes glazed over. When you think of the words ‘autism documentary’, what are the first words that come to mind? Controversy, screaming children, sad music. It seems boring, like something that’s been done many times before. But I had a good reason to make this film, and that reason is my cousin Grant.

I grew up in a small city in West Texas and have fond memories of visiting my Dad’s family in a small town. My aunt and uncle and their kids are among the kindest people I know. They have smiling eyes, a knack for making up fun games, and making me feel at home.

One memory plays over and over in my mind. I’m sitting inside, drinking Dr. Pepper. Everyone is telling stories, and I’m looking out the window at my cousin Grant jumping on the trampoline. I’ve been told that he has something called autism, and I don’t know much about what that means.

I know that Grant can’t talk. I keep watching him. He’s jumping for hours and flapping his hands. I’ve finished my Dr. Pepper, and he’s still jumping. The West Texas sun is setting, and he’s still jumping. He looks joyful and full of life.

Later in life, I kept hearing more about autism. Everyone is concerned about the cause of autism. It’s deemed a puzzle to be solved. But when I think of my cousin Grant, I imagine him jumping, and while I know his daily life is difficult, I wanted to know more about how he sees the world and what joy feels like for him.

And so, I started to make this documentary called SPECTRUM: A Story of the Mind to explore the experience of autism rather than the cause. Together with my fellow producer and cinematographer Brent Yontz, we packed up our film gear and started traveling the country.

We started by interviewing the famed Temple Grandin after a conference in Ohio. Then, we flew to Austin to meet Tito Mukhopadhyay, an author and poet who types to communicate. We went to Berkeley to meet Nick Walker, an aikido artist and autistic activist. And we went to Wisconsin to meet Judy Endow, an author and painter.

Each person shared their way of seeing and experiencing the world. For example, Judy explained how eye contact can be intense and painful. Tito described sensory overload as the world turning into “fragments” before his eyes. Nick helped me understand the beauty of his synesthesia.

I learned more than I could possibly fit into one film. Not only that, it felt impossible for me as a neurotypical to represent autism on screen. Instead, we aimed to create a sense of emotional truth.

Our composer, Frederik Wiedmann, wrote a brilliant soundtrack that echoes the joy I saw in my cousin Grant. Our lead animators, Gloria Arteaga and Richard O’Connor, created stunning animation, rich with color and movement. When the credits roll, I hope SPECTRUM inspires viewers to think about autism with a new sense of curiosity and maybe even joy.

Accepting my autism as an adult

by Maurice Snell

Maurice

Growing up with autism can have its advantages and disadvantages. One big disadvantage can be trying to communicate to others but you don’t have the words to communicate. You might have that one thought in your mind, but you can’t express yourself. That’s what I had to endure during my early years of living with autism. I had the need to express myself, but I couldn’t find the words and expressions to identify myself or what I wanted in life.

Which is why I began receiving services at Easter Seals Metropolitan Chicago. When I first received services at their Autism Therapeutic Schools I was a shy kid with little or no speech. I didn’t want to interact with other peers. I didn’t know how they would accept me, or if they would accept me at all. The good thing about me attending the Easter Seals Autism Therapeutic School was that every client I associated with all had one thing in common, which was a welcoming sight that I’m like everyone else.

I’m grateful for the services Easter Seals offered me. Easter Seals helped me to develop academically and socially in my life. It also prepared me to enter into adulthood and accomplish goals I’ve never dreamed of before in my lifetime, most notably graduating from high school and college. None of this would be possible if it wasn’t for the support system of my family and the wonderful folks at Easter Seals.

Which brings me to the present day: I currently work as the Development Coordinator of Easter Seals Metropolitan Chicago, and I’m now an advocate for many clients with autism. I continue to give back to Easter Seals by being involved in various programs and mentor many clients who are looking for success in the future. I go out and spread the word to many families and organizations to encourage hope and inspire others that many individuals with autism can achieve their highest goals possible.

To quote the illustrious genius, Albert Einstein: “Imagination is more important than knowledge.” Individuals living with autism all have a sense of imagination of who they could become in the future. However, nobody in this world can become a genius overnight. There are challenges that lie ahead of you in today’s world, whether you are diagnosed with a disability or not. You have to look at it one day at a time.

This is what I hope for in our current students of the Autism Therapeutic School. I encourage them to become successful in today’s world so there will be much more success stories to come.

If you believe it, no doubt ANYONE with autism can do it. Not only adults, but EVERYONE living with autism CAN achieve to their highest standards. It took me 32 years of my life to grow up, but I finally figured it out.

Learn more about Easter Seals autism services.

Good news for tax filers with disabilities!

by Beth Finke

Today is April 15, which is usually the day Americans need to file their income taxes. This year, however, the deadline is actually April 18. You’ve still got three days!

If you have a disability and haven’t filed yet, here are three things that may encourage you to meet Monday’s deadline:

1. Free tax preparation services. IRS-trained volunteers provide free service for those who cannot do their own returns or afford paid preparers. More than 500,000 returns prepared free of charge last year were done for people who have disabilities. More information is available on the IRS web site. You can also call 800-906-9887 or download the IRS2Go app for details.
2. Child care tax credits available to people with disabilities. Child and Dependent Care Expenses is a tax credit often overlooked by people with disabilities. Families usually use this credit when they have children under the age of 13, but as long as one of the spouses filling out the form is working, there is no age limitation if the person being cared for is physically or mentally unable to care for themselves. The IRS says the person being cared for must not be able to dress, clean or feed themselves because of physical or mental disabilities to qualify, and individuals who must have constant attention/care to prevent injury to themselves or others are also considered not able to care for themselves.
3. Concerns that tax refunds might impact eligibility for other public benefits. People with disabilities sometimes worry that a tax refund will affect their eligibility for Social Security disability benefits, Medicaid and Food Stamps. Here’s the thing, though: tax refunds are not taken into account as income when it comes to determining eligibility for benefits from a federal program and/or any state or local program financed in whole or in part with federal funds.

I gleaned this information from the irs blog. Publication 907, Tax Highlights for Persons with Disabilities, also explains the tax implications of certain disability benefits and other issues. Hundreds of accessible federal tax forms and publications are also available for download from the IRS Accessibility page.

For more information, visit IRS.gov, select the “Forms & Pubs” tab and then the “Accessible” tab to access the accessible forms and publications. You can choose from large-print, text, accessible PDFs, e-Braille or HTML formats that are compatible with screen readers and refreshable Braille displays. The IRS also provides American Sign Language videos with the latest tax information

FAQs on traveling when blind or visually impaired

by Beth Finke

I returned to Chicago last night after a weeklong vacation in the Pacific Northwest, and the long flight back yesterday gave me time to write out answers to questions I get about how I manage to navigate O’Hare alone with Whitney, my Seeing Eye dog:

Whitney makes the most of travel time.

• How do you get to the airport? Many people who are blind use public transportation to get to airports, but I’m afraid of using the subway alone with my Seeing Eye dog – I’m nervous about falling into the tracks. I’d be open to taking a Chicago Transit Authority bus, but I’d want to do a trial run ahead of time to know exactly where they’d be dropping me off. I usually use a hotel shuttle, taxi, limo, or van service, and I tip well.
• Where do you tell them to drop you off? Before I leave home, I check and double-check which airline I’m using and have the driver let me off at that specific Curbside check-in. Even if I’m not checking a bag, the workers at curbside check-in can check me in, get my boarding pass and sign me in for airport assistance. The curbside check-in worker guides my Seeing Eye dog and me to a seat inside and lets me know what my call number is. I tip them well.
• What do you do in the waiting area? Whitney sits under my seat there as I empty my pockets and put my change, iPhone, keys, and all into a compartment of my carry-on (will make it easier to go through security). Then I listen for a airline assistant to come call out my assigned number.
• How do you get to security? When an airline assistant calls our number, I get their attention and have them place my carry-on bag onto the seat of the wheelchair they brought along. I give Whitney the “follow” command and we shadow the airline assistant to the security line.
• How do you get into the screening area? For obvious reasons, I don’t have a valid driver’s license. I use a State of Illinois ID card instead, and show that along with my boarding pass as I enter the screening area. I have a cool wallet with a long pocket that holds my boarding pass and ID in it, very handy if/when I need them again at the gate.
• How do you get through security? I take my laptop computer and hand it to my airport assistant to place in a bin along with my shoes, jacket, and carry-on bag.
• How do you get through the magnetometer? After giving Whitney the “sit” command, I lengthen her leash and give her a “rest” command so she’ll sit still while I let the TSA screener know how I intend on getting through. My dog sits while I explain, and her leash remains in my left hand as I extend my right hand to the scrrener and ask them to pull me through the arch. If I brush against the interior wall by mistake, the alarm sounds. I remind my Seeing Eye dog to “rest” where she is and I return, turn around, extend my right hand to the screener and walk through the arch again. Once I get verbal confirmation from the TSA agent that I’ve cleared successfully, I turn around and call Whitney to come through. The alarm goes off when my dog comes through, but going through by myself ahead of Whitney makes it clear to the screeners that her harness and leash set off the alarm, not me.
• So do they have to wand the dog, then? Sometimes the screener wands her harness, and they always feel around her collar and pet her to inspect as well. I often quip to the TSA worker that my dog is the only creature who actually likes going through security. “It’s the only time I let someone pet her when her harness is on!”
• How do you get your stuff off the conveyor belt? It’s important for me to remember what color jacket I was wearing, what shoes I had on and what type of laptop I use so I can describe them to the airline assistant helping me — they collect my things once they’ve cleared security. I’ve added Braille stickers to some of the keys on my laptop, and I often open it quickly and feel the keys to confirm its mine.
• How do you find the gate from there? My airport assistant knows where the gate is, so I give Whitney a “follow!” command and we shadow them from there. Once we’re at the gate the airport assistant finds me a seat. I ask to sit close to the jetway so I can be alert to when the flight is called, and so I’ll know which way to face when I give my guide dog the “forward” command to get us on the plane. Once I’m seated, my airport assistant heads to the desk with my boarding pass and returns with a pre-boarding ticket for us. I tip them well.

Usually someone from the airline approaches us to let us know they’re about to announce pre-boarding, but if they forget, I hear the announcement and, since I’m in a seat near the jetway I can hear the airline staff talking to each other there. I stand up, square my shoulders in the direction of their voices, and give Whitney a “forward!” command to lead me there.
The airline worker looks at my boarding pass, checks me in, and Whitney leads me down the jetway on her own, a flight attendant on board meets us as we enter the aircraft, looks at my boarding pass to determine where are seat is and then leads us to the row.

Pre-boarding means there aren’t any other carry-on bags in the overhead bin yet, so it’s easy for me to put mine up there by myself. Once I’m situated, Whitney backs into the row, sits with her bottom under the seat in front of me, nestles her head between my feet, and…we’re off!

Autism state of the states report

by Beth Finke

Every year Easter Seals publishes State Autism Profiles that look at Autism Services in America, and this year is no exception. Our state-of-the-states report on autism services is a comprehensive and objective resource on how the fifty states, District of Columbia and Puerto Rico are responding to the needs of individuals living with autism spectrum disorders. The profiles offer information on the following categories:

• demographics
• state task force
• state insurance coverage
• Medicaid
• education and, if applicable, education programs and activities
• other state resources
• state legislative calendars
• sponsors of autism legislation

This information is helpful to parents and can come in handy when writing grants and preparing for state legislative sessions. Check it out — see how your state is doing in dealing with autism compared with the rest.

You say autism awareness, I say acceptance

by Beth Finke

The Autistic Self Advocacy Network (ASAN) has been leading a campaign for years to emphasize the importance of moving from autism awareness to autism acceptance, and labeling April Autism Acceptance Month has been part of this movement. From the ASAN website:

In support of this community-wide effort, ASAN has created a dedicated website for Autism Acceptance Month, and provides unique programming every April focused on promoting acceptance and inclusion and changing the dialogue about autism from fear, pity, and tragedy to support, acceptance, and empowerment.

I like the change. Awareness is great, but I can understand how acceptance should be part of the message as well.

I would like to think that everyone already knows about autism, that we are done with awareness, but I know this isn’t true. I would like to think that acceptance is a given, that our society accepts all people with disabilities, but I know firsthand that this isn’t true, either. Awareness and acceptance are both important.

Find out how we are spreading the word about autism acceptance and awareness this month on Easterseals.com.

Meet Charlie: Easter Seals’ newest superstar

by Elsa Remak

He’s a TV star, aspiring director, hip hop dancer…and did I mention he’s still in elementary school?!

Meet Charlie Owens, an Easter Seals client with autism who’s making television history. This summer, Charlie will charm viewers across the country as the star of an autism focused episode of Mack & Moxy, a groundbreaking television series introducing kids to cause.

Featuring some of the most prominent leads in entertainment and the brains behind the top kids programming of the decade, Mack & Moxy teaches compassion and life-long lessons of charity to our youngest generation. It’s the first time a child with autism who’s not an actor has been featured in an entertainment program of this capacity.

Charlie in a director’s chair on set

So how did this two-year journey begin? Each episode of the program partners with a different nonprofit to tell a story around a particular cause. Easter Seals was carefully selected to represent disability in the show’s inaugural season. We’ve been involved in nearly every aspect of production — from scripting to filming, and even animation.

Charlie, or “Trooper Charlie,” as you’ll soon know him, was selected through a nationwide search of Easter Seals clients. The St. Louis native won us over with his dreams to be a playwright and director — dreams that came one step closer while filming Mack & Moxy.

When I first met Charlie, he was hip-hop dancing in middle of The Grove, a popular Los Angeles outdoor plaza. I thought to myself, “this is one cool kid.” On-set Charlie was a true professional—acing his lines, musical numbers and dance sequences. By the end of the shoot, Charlie was the one directing the cast and crew.

It’s easy to see why Charlie may be the coolest fifth-grader around. He’s surrounded by some pretty incredible people. Charlie’s father, Craig, is a city manager who played a pivotal role in training the city’s first responders in how to interact with people with autism in emergency situations. His mother, Elizabeth, has an infectious energy that you can see was passed down to Charlie. Charlie’s twin brother, Max, is also on the spectrum. Charlie has been a great role model for Max—encouraging Max’s social skills and language development. While Charlie may be the actor in the family, Max is the athlete. He’s a great runner and loves to go biking with his brother. Charlie’s fan club extends to his inclusive school, where he has the support of his teachers and friends of all abilities.

Charlie challenges society’s preconceived notions of what’s possible for a child with autism. Our hope is seeing Charlie in this role will create a pathway for this — proving kids with autism and other disabilities can achieve whatever they want, they just may need some help along the way. And Easter Seals is there to do just that.

Our episode of Mack & Moxy will be airing in select PBS markets across the country throughout June and July, followed by a spring home video release and a fall 2016 Netflix debut.

Leading up to the release, Easterseals.com will be your hub for all things Mack & Moxy, including the reveal of who our celebrity will be! In the meantime, get to know our celebrity, Trooper Charlie by watching this video.

A musician’s song for his son with autism

by Beth Finke

The Decemberists’ Colin Meloy singing “Rise to Me”

I love The Decemberists. Who can argue with a band that has accordion, pedal steel guitar, and upright bass? I like the band’s originality. I like their complicated lyrics. I even like lead singer Colin Meloy’s unapologetically nasal voice, especially in the song “Rise to Me”.

In an interview with Time Magazine — published after Colin Meloy’s son was diagnosed with Autism Spectrum Disorder — The Decemberists’ frontman said he wrote the song “Rise to Me” on The King is Dead album for young Henry. The lyrics are particularly moving during April — Autism Acceptance month:

Hey Henry can you hear me?
Let me see those eyes
This distance between us
Can seem a mountain size
But boy:
You are going to stand your ground.

When the Time reporter asked about the song, Meloy said, “It’s chronicling our feelings as a family and the sort of face that we have to put on to remain sane.” You can listen to “Rise to Me” on YouTube — see what you think.

Providing help, hope, and answers to people with Autism Spectrum Disorder

by Beth Finke

World Autism Awareness Day is tomorrow, April 2, 2016.

World Autism Awareness Day is observed on April 2.

I’m marking the occasion a day early to let you know about the Autism Spectrum Disorder services and treatments Easter Seals makes available to families living with ASD. A number of wonderful organizations research and study the cause and cure for ASD — Easter Seals stands out as the nation’s leading provider of services and support for children and adults living with ASD.

Our Living with Autism Study is one example. That study provided us with quantifiable information about the services and supports that families living with ASD desperately need. Parents of children with ASD are struggling with a host of worries that impact every aspect of their lives. They are particularly concerned that their family will lack the life-long supports needed to address the significant challenges of Autism Spectrum Disorder.

Results of the study revealed parents raising children with ASD were very concerned about the future independence of their children. In fact, they were far more concerned than parents of typically developing children — nearly 80 percent said they were extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of parents of typically developing children. This was especially true when it came to their financial independence, quality of life, social and interpersonal connections, and employment and housing opportunities — and with good reason.

The study quantified what Easter Seals has heard anecdotally over the years. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has ASD — is an overwhelming concern about the life-long supports their child with ASD may need.

More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with ASD today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with ASD.

Every family living with a person who has ASD faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with ASD.

We want to help change all of this and make a difference for families living with Autism Spectrum Disorder today. Help us change the lives of people living with ASD by becoming a volunteer or a donor. To learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

“I want you to see more than just my blindness”

by Beth Finke

If you haven’t signed up to follow BlindBeader’s Life Unscripted blog yet, I highly recommend you do. BlindBeader is a gifted young writer who lives in Edmonton, Alberta, with her husband, 3 cats and guide dog Jenny. This past week a video in honor of World Down Syndrome Day narrated by a young woman who has Down Syndrome (and portrayed by an actress named Olivia Wilde, who does not) motivated BlindBeader to write a post on Life Unscripted about how she herself would like to be seen by others. You can read BlindBeader’s post in its entirety on the Life Unscripted blog – for now, here’s an excerpt.

Do you see me with vision?

by Blindbeader

Blogger BlindBeader and guide dog Jenny waiting for a water taxi during a visit to NYC.

I am a woman with a disability. As such, I face many reactions from the general public. It would be a lie if I said these comments and impressions don’t affect me, because they do, no matter how I try and fight it.

Not only do they affect how I see myself, they ultimately affect my livelihood and ability to be autonomous and self-sufficient. So, in a way, I want people to look past my disability, to allow me to make mistakes or succeed on my own merits as a woman, not just settle for “good enough” because of the perception that I can’t do any better because I have a proverbial scarlet D for Disabled tattooed on my forehead.

And yet, I have no desire to hide my disability. This is partly because it’s not possible for me, but it’s also because I feel like I need to live the best life I can — a vibrant, complex, nuanced, full life with blindness — in order to be happy and to embrace all of who I am. The comments and questions and seemingly constant advocacy aren’t ever going to go away, so as I see it, I have two choices:

1. run and hide and let everyone else fight battles for me, or
2. prove again and again that there is nothing shameful about being blind, and in fact it has its own advantages.

To ignore my blindness completely is to ignore the one thing in my life that has made me as strong as I am while simultaneously bringing me to my knees.

Actress Olivia Wilde in the video titled “How Do You See Me?” for CoorDown’s World Down Syndrome Day campaign.

I want you to see more than just my blindness, to view me as a friend, an employee, an athlete, an entrepreneur, a customer… a human being. Talk to me, and anyone with a disability, as though your comments were directed back at yourself; realize that we are more than just people whose eyes don’t work or who don’t hear well or are unable to walk at all or without significant pain. We share your humanity, enjoy some of your hobbies, have opinions about religion or politics, have hopes and dreams and desires for our lives.

But you don’t need to tiptoe around us, either. Don’t ignore our disability; it is still a part of who we are. In ignoring it, you are in effect not acknowledging the discrimination that we face and the pain and anger that engenders, and can’t truly get to know the completeness of our lives by truly celebrating our successes or picking us up when we’re feeling down.

Do you see me as a woman, with dreams for the future and hopes for tomorrow? A woman who likes hockey, loves running, and makes pretty beaded things? A woman who drinks too much coffee, loves the sound of a recent snowfall, and sings at the top of her lungs when no one’s around to hear her?

That’s great! You see a big part of who I am. Do you see a woman whose eyes don’t work right, who puts labels on her canned goods in her pantry, who navigates the world with a guide dog by her side? A woman who is happy and content with her life, blindness and all, who wants to kick down doors and break down barriers? That’s another part of who I am. You can’t separate one from the other, and yet in a way I need you to.

If all you can see is what doesn’t work (my eyes), then you’re missing out on a wicked Scrabble game, a loyal employee, or someone who will cause you to rethink your view of the world. And if you act like my blindness isn’t there, or is scary and uncomfortable, you’re ignoring a true reality of my existence.

Put the pieces together, take them apart. See me completely, because I can’t envision myself as one person without the other keeping me company.