Is autism about how one perceives the world?

boy-autism-stockAs Autism Awareness Month draws to a close, I can’t help but write one more post about what an honor it is to be invited to schools to educate kids about autism. It is so gratifying to make kids more aware of what it is like to be on the spectrum, and the response I get to my presentations is truly magical.

And to think that I protested the first time I had the chance to present. Oh, I was scared. Scared because what could I say to a fifth grader that would make sense? Scared? Very much so. My protests were futile, however. I was told I was doing it (and they were right to say that to me).

It was a rocky start. Before I began my first ever presentation, I turned to the teacher and whispered, “Help!” She responded that I should start by explaining what, exactly, autism and Asperger’s is. Great idea, but I didn’t know what to say.

Then, a student in the middle of the classroom rose his hand and said, “Excuse me, but, if I’m not mistaken, isn’t autism and Asperger’s just a different way of perceiving the world around you?” There was this hush after that. I was taken aback. And then I responded, “Hey, you want my job?”

From there it’s just grown and grown. It started with classrooms and now I’ll speak to entire student bodies. And the questions, oh my, I wish you could see it! You’d be shocked by their frame of reference.

Someone usually will ask the question in the Q&A section of, “How many people have autism?” Before I answer I ask, “How many people here know someone, or knows someone that knows someone, with autism?” It never fails that at least 75% of the student body raise their hands.

In that moment, awareness and understanding is thrust into overdrive. They realize that autism isn’t something that is isolated to a cousin, a sibling, an uncle. It’s something much more prevalent.

After that, the level of compassion, empathy, and truly wanting answers is evident in the way the questions are asked. I always leave these presentations with a smile on my face and true hope for the future. I believe that if we want to truly change the world we have to reach the future. What better way to do that than to speak to tomorrow’s future?

Related Stories:

Meet Charlie and Max, twin boys with autism.

 

11 stories of hope about autism

Parker receives services at Easter Seals Bay Area's Early Intervention Autism ProjectIf you read the post I wrote earlier this month, you know the unemployment rate among people living with autism is very high. This year we’ll be celebrating the 25th anniversary of the Americans with Disabilities Act, but we still have a long way to go when it comes to hiring people who have disabilities. Even when a person with a disability has the same qualifications as someone without a disability, it can be more difficult for the one with a disability to get the job.

Few challenges are easy, and we have a long way to go, but when I start feeling glum about the statistics, I try to remember to check out these 11 stories of hope on the Easter Seals web site. All 11 people highlighted are on the autism spectrum, and six of the stories are about adults with autism.

Autism Awareness Month may be drawing to a close, but long after April is over Easter Seals will continue raising awareness of and advocating for the life-long services millions of families living with autism desperately need — including school-to-work transitions, employment support, residential and community support, and financial planning.

 

Is the Apple watch accessible?

apple-watchPeople often ask me if there are any GPS programs that are especially suited to people who travel by foot and have visual impairments (there are) and whether or not I use them (I don’t). I use a Seeing Eye dog to get around safely, and with one hand constantly gripped on the harness, it would be difficult to maneuver a phone or other contraption to ask it where I am or what direction I should turn.

That is one (of many) reasons I am intrigued with the new Apple Watch. If I had the unit strapped to my wrist, maybe I’d be able to manipulate it with my free hand.

A lots been said about the launch of the new Apple Watch, but it seems little has been made about whether or not it is accessible to people with disabilities, so I did a little research.

Good news! Every Apple Watch ships from the factory with VoiceOver built in. VoiceOver is the same gesture-based screen reader I use with my iPhone, and apparently a speaker on Apple Watch tells blind users everything that’s happening on the screen even if we can’t see it.

Those of us who are blind will have to learn new Apple Watch gestures for VoiceOver users and figure out how to work with both the crown and the Touch screen to navigate, but hey, people who can see the screen will have to learn new techniques, too. The Apple watch accessibility page says assistive technologies for people with hearing loss come standard on Apple Watch as well. From their site:

As with every product we make, we want as many people as possible to enjoy using Apple Watch. That’s why it’s designed with assistive technologies and features that make it easy for people with disabilities to use. Accessing them is also simple, either through Settings on the device itself or through the Apple Watch app on your iPhone.

I can’t wait to get my hands on one.

 

Book review: Anthony Doerr’s “All the Light We Cannot See”

AllTheLightI’m in Michigan this week — one day I’m giving a presentation at an elementary school in Caledonia, and the next day I’ve been invited to a book club sponsored by St. Matthew’s Church in Spring Lake. They’re reading a book that has a blind character in it, and I’ve been asked to give my viewpoint. I usually avoid reading novels and short stories with characters who are blind. Too many fiction writers portray blind characters one-dimensionally — we’re either heroic or tragic, bumbling or, particularly lately, blessed with super-powers.

But Anthony Doerr isn’t like other authors.

One of the main characters in Doerr’s current best-selling novel All the Light We Cannot See is blind, but there’s much more to Marie-Laure LeBlanc than that. She grew up in Paris, her father is raising her on his own. The two of them evacuate to a village in Brittany called St. Malo after Paris is invaded by the Nazis, her father goes missing, and she’s a teenager by the time the Americans arrive on D-Day.

Doerr writes in third-person, and his chapters are very short — they swing back and forth between the changes young Marie-Laure is enduring in France and those that Werner Pfennig, an orphaned teenager in Germany, faces when placed in an elite Nazi training school there during WWII.

The author avoids using visual descriptions in the chapters about Marie-Laure, since they are written from her point of view. So here’s a question for you blog readers who’ve read the book already: I bet you can describe Marie-Laure’s beloved Papa , but any idea what he looks like? Probably not, because the author never tells us that. There is little, if any, visual description of Étienne or Madame Manec (the pair Marie-Laure and her Papa live with in exile) either, yet readers come to know these characters very well, too. Here’s an example from early in the book, before Marie-Laure’s cigarette-smoking Papa goes missing:

Every time she comes within earshot, Marie-Laure hears the “Pfsssst!” of her father lighting another match. His hands flutter between his pockets.

Afternoons he repairs things around Étienne’s house: a loose cabinet door, a squeaking stair board. He asks Madame Manec about the reliability of the neighbors. He flips the locking clasp on his toolcase over and over, until Marie-Laure begs him to stop.

Marie-Laure doesn’t have to be able to see her Papa to know he is anxious, and neither do we. If Marie-Laure could see, the author wouldn’t have pointed out that she sees the cabinet door he is fixing, he would have just said “he’s fixing a cabinet door.” And so, he doesn’t use extra words to point out Marie-Laure hears the squeaky cabinet door, either. We know he’s fixing the cabinet door the same way Marie-Laure would know, and that helps us stay right in her head and experience her life during WWII the way she is.

As I continued reading, I noticed how often Doerr chose the verb “find” rather than describe Marie-Laure “feeling through” something or “touching” an object. Sounds simple, I guess, but to me, keeping it simple like this is brilliant. Over and over again, the author resists the temptation to sound trumpets to remind the reader that Marie-Laure can’t see, and that keeps readers in the moment. Here’s another example, this one from later in the book when Marie Laure is alone and escaping into the attic:

Only thing to do is climb. Seven runs up into the long triangular tunnel of the garret. The raw timbered ceiling rises on both sides toward the peak, just higher than the top of her head.
Heat has lodged itself up here. No window. No exit. No where else to run. No way out, except the way she has come.

The passage continues:

Her outstretched fingers find an old shaving bowl, an umbrella stand, and a crate full of who-knows-what. The attic floor boards beneath her feet are as wide across as her hands. She knows from experience how much noise a person walking on them makes.

Isn’t it something, the way that using senses beyond the visual can make writing more colorful? I’ll leave you with a quote from Marie-Laure near the end of All the Light We Cannot See. I especially related to this quote, and if you haven’t already, I heartily recommend you read this book. It’s très bien.

“When I lost my sight, people said I was brave. When my father left, people said I was brave. But it is not bravery; I have no choice.”

 

Is that service dog legit?

idcardMy Seeing Eye dog Whitney is carded every time we enter the lobby of the Chicago high-rise where my doctor’s office is. Humans who walk into that building are required to show an ID card, and they also ask for an ID to prove that the superbly-trained 5-year-old Golden Retriever/Labrador Cross who guides me through a revolving door, into their lobby, around their desk and onto the elevator is legit.

There is currently no national or universal certification process for trained service animals. It is not illegal for a person to ask for an ID card for a service dog, but a person using a service dog cannot be required to show any kind of certification or identification in order to have a service dog accompany them. This is one of the most misunderstood pieces of ADA regulation about service animals.

The ADA allows business owners and the like to ask two, and only two, things when questioning whether a service dog is legit or not:

  1. whether the animal is, in fact, a service animal
  2. what tasks the animal is trained to perform

Beth and Whitney (photo courtesy of WBEZ)The security guard at my doctor’s office building isn’t aware of those rules, though. He told me they’d all been told to ask for certification when anyone comes into the building claiming the dog at their side is a service dog. “A lot of them fake it,” the guard said with a shrug. I wasn’t surprised. Let’s face it. It’s not hard to tie a vest on a dog, and it’s pretty easy to get fake certification for a dog as well. It’s not easy to live with a significant disability, however, and faking that you have one is an insult to everyone who really needs their dog, and to the airlines, hotels, restaurants and stores who are trying to do what’s right.

That’s why I’ve taken interest in a bill going through the House and Senate in the state of Florida. The proposed bill would make it a misdemeanor to pass off a pet as a service animal in Florida as well as making it a misdemeanor to harass a person with disabilities about their need for a service animal. The House version of the bill passed with a unanimous vote in late March, and the Senate version is going through committees now. If it passes, interfering with a person with a disability and their service animal in Florida would be a second-degree misdemeanor, carrying penalties of up to 60 days in jail, up to $500 in fines and 30 hours of community service for an organization that serves people with disabilities or another entity, at the discretion of a judge. The same crime and penalties would apply to pet owners who lie about having a disability and falsely claim that their pet is a service animal. It’ll be interesting to see where this bill ends up.

In the meantime, back here in Illinois, my dog Whitney does have an i.d. card. The Seeing Eye provides i.d. cards to all its graduates, and it isn’t much trouble to fetch Whitney’s ID out of my wallet, so I don’t put up a fit. When asked at my doctor’s office, I just show the card, command Whitney to lead me forward, and we proceed to the elevator. I’m just sorry that fakers have brought us to the point where legislators are being forced to spend time on something they shouldn’t have to bother with.

 

I wish my classmates knew I had autism

And now for part two of Monday’s post about medical privacy written by guest blogger Aaron Likens. Aaron is the Autism Ambassador for Easter Seals Midwest and raises awareness of Autism Spectrum Disorders by giving presentations to police, students, parents and teachers. This post seemed especially appropriate for April, which is Autism Awareness Month.

The power of awareness

by Aaron Likens

Aaron LikensOne thing I love about my job is the countless opportunities I’ve had to speak to entire student bodies about the autism spectrum. Oh, I wish you could hear the amazing questions I’ve come across from all grade levels. When someone stands up and proclaims, “Hi, I don’t really have a question but I have a comment and I just want to let everyone know that I have Asperger’s, too,” well, it sends chills each time I hear that. That student in that moment felt empowered to speak up about this mysterious thing, and now something that was seemingly unknown to others beforehand — all the quirks, the oddities, and all that goes with being on the spectrum — might now make sense to others. That’s the power of awareness.

My motto throughout my speaking career has been “understanding is the foundation for hope.” Without the understanding, well, a classroom can become resentful and maybe even spiteful at the different way students on the spectrum act, and the different ways they might be treated by teachers and staff. I don’t feel right telling people on the autism spectrum whether to disclose that information to others. I know some individuals with Asperger’s that will never, no matter the situation, open up and tell a soul about their diagnosis and they are entitled to that. At the same time another individual may want that knowledge to be out there because maybe they won’t be called “weird” or “odd” because there may be a better understanding of who they are.

I know I wish my classmates had known about my diagnosis (I didn’t know myself until I got diagnosed at the age of 20) because maybe I wouldn’t have been such an outcast like I was. I feel we are progressing towards better understanding of neural diversity and all the possible conditions, syndromes, and any other words that could fit that. The ultimate destination is acceptance, but without awareness there can be no understanding, and without understanding I’m afraid the cycle of confusion and frustration will just continue.

Learn more about autism spectrum disorder on easterseals.com.

 

The dilemma of medical privacy at school

We are pleased to have Aaron Likens back as a guest blogger. Aaron was diagnosed with Asperger’s Syndrome (as was the diagnosis back then, but now Asperger’s is considered  Autism Spectrum Disorder) at age 20 and is now the Autism Ambassador for Easter Seals Midwest.

What is fair?

by Aaron Likens

Aaron LikensA woman who heard a presentation I’d given in Jefferson City, Missouri, left a comment to the guest post I wrote here last year and asked my advice regarding a situation in her daughter’s classroom.

Seems there is a student in her daughter’s classroom who has a learning disability or condition of some sort, but that’s it: the student’s issue has not been defined for everyone else. Other students in the classroom witness this other student breaking rules without repercussions, and they see this as favoritism.

This brings up a tricky issue that I think we are going to see more and more of. In my response to her comment, I called it a “no-win” situation, but now I’m not so sure I like that terminology. Let’s go over the issues:

  1. It could be said that if the other students were made aware of the issue there could be more understanding, compassion, and empathy.
  2. However, a school cannot disclose medical information they are aware of because individuals are entitled to medical privacy.
  3. As students grow up and leave school, they’ll come across individuals that may have a disability that is undisclosed.
  4. So that happens in real life, but in the classroom, is it right?

The thing that makes this so tricky is that there are as many wrong answers as there are right ones. Medical privacy is important, but in this example, who can blame the other students for wondering why this person gets unspoken special treatment? Doesn’t everyone have to follow the rules? With zero information, the other students may wonder why certain rules only apply to certain people. Is this right? Maybe it is, maybe it isn’t.

Looking from the parents perspective, I can imagine they might be afraid of the stigma that could come from disclosing the diagnosis. They may fear it could lead to needless bullying of their child. But as a person with Asperger’s, this is tricky to write. I hope you, the blog reader, can see the dilemma here. It’s one that I think will continue to grow and grow and I don’t think there is one single answer.

When asked about an issue like this at the presentations I give, I say, “fair isn’t what’s fair for all, but what is fair and needed for each individual.” But when the rest of the classroom has zero awareness of an individual’s learning disability or condition, it could create an isolating experience, and that may not be fair, either.

Tell us what you think in the Comments section below.

Plus, see how one child with autism is succeeding in school thanks to his Individual Education Plan, or IEP.

 

You could win a college scholarship worth $5,000+

grad-hatComcast Corporation is Easter Seals premier media partner – they provide $3 million of PSA air time to support our mission. Together, Comcast and NBCUniversal create and deliver programs that connect people and inspire positive and substantive change in the communities they serve.

Here’s one huge example: Right now applications are being accepted for 2015 NBCUniversal Tony Coelho Media Scholarships. These scholarships will be awarded to students with disabilities who are pursuing communication or media-related degrees, and each recipient receives $5,625 for the tuition and fees at their college or university for the spring, summer, or fall semesters of 2015. The scholarship is available to students enrolled at any of the following levels:

  • 2nd year associate students
  • undergraduate sophomores, juniors, and seniors
  • graduate students

You can download the application from the American Association of People with Disabilities website for a 2015 NBCUniversal Tony Coelho Media Scholarship. Applications must be submitted with the following supporting materials:

  • resume
  • transcript
  • letter of recommendation from a professor, academic advisor, or mentor

In addition, applicants must write a 300 to 350-word essay answering the following questions:

  • What inspired you to pursue a communications/media related degree?
  • How will you use your degree to positively impact the disability community?

All applications and supporting materials must be emailed to scholarship@aapd.com by 5 p.m. eastern time on Friday, April 24, 2015. What a wonderful opportunity –good luck to all applicants.

 

We agree with the UN Secretary General on employing those with autism

autism day from united nationsLast Wednesday The United Nations secretary General Ban Ki-Moon wrote about hiring people with autism, saying he’d been inspired by meetings with individuals with autism and their level of accomplishment:

They are an example to us all.
People with autism have enormous potential. Most have remarkable visual, artistic or academic skills.
Research suggests that people on the autism spectrum have certain abilities in greater abundance than “neurotypical” workers do, such as heightened pattern recognition and logical reasoning, as well as a greater attention to detail.
These qualities make them particularly successful at certain kinds of employment, such as software testing, data entry, lab work and proofreading, to name but a few.

In my post last week about World Autism Awareness Day, I pointed out that more than 80% of adults with autism around the world are unemployed, and I listed a number of hurdles that keep that number so high:

  • a shortage of vocational training
  • inadequate support with job placement
  • pervasive discrimination.

With all that in mind, I was delighted to read that UN secretary General Ban Ki-Moon was launching an employment call to action inviting businesses to make concrete commitments to employ people on the autism spectrum. He wrote that he hopes that “through this initiative, companies will take a closer look at the way they perceive people with autism, take the time to learn about the condition and create life-changing opportunities for this largely untapped pool of talent and skills.” He also pointed out that businesses that respond to his call to action will:

  • demonstrate leadership
  • improve the quality of their products
  • improve the quality of their services
  • achieve a stronger understanding of their customer base by having a workforce that better reflects the general population
  • be able to offer an attractive work environment to potential and current recruits (since a workplace where people with autism thrive is often a great place for all employees.)

Here at Easter Seals, we couldn’t agree with him more. Check out Easter Seals national employment training and job placement assistance resources here.

 

Career Connect offers lifelong skills with temporary employment

amber legos-BobG-blog-4-3-15Beth Finke’s post last Wednesday about the high unemployment rate among people living with autism makes this a good time to publish a post about a job-training program with positive results at Easter Seals Southeast Wisconsin.

We have always encouraged short-term employment opportunities as a way for our clients to gain experience and build a resume, and we are working on more hands-on experiences for participants in our work-training activities. About two years ago we piloted a new program called Career Connect — here’s how it’s described on our web site:

Career Connect is a community-prevocational program designed to increase employment skills needed for success in the workplace. Career Connect consists of a soft skills curriculum, a variety of community outings, and internship experiences. The program is designed to increase social skills, promote career explorations, and provide opportunities to integrate participants into the community. After completing the program, participants will be ready to maintain employment in the community.

Career Connect uses daily group activities, skill-building volunteer activities and an internship component at a local technical college to go beyond individual short-term employment engagements to more individualized support. Two of our Career Connect students recently shared daily reflections about what they are learning, and I thought I’d share them with you here.

1502_Sara_0530-BobG-blog-4-3-15Amber worked in a local daycare, volunteered at a food pantry and spent one day at a local Sam’s Club. Here’s what she said about lessons she’d learned in classes she took in conjunction with her on-the-job experiences: “We also learned about some of the soft skills that we will need to have in order to get and keep a job. Like problem solving, conflict resolution, team work and collaborating, and communication. These are just some of the things that we will need to be able to do in our internships and our jobs.”

Another new worker, Sara, learned that we are all human and make mistakes. She wrote: “Today at work I made a mistake and didn’t clean the pan right. My co-worker helped me out with the pan. They were happy to help me out. It taught me that making mistakes is ok sometimes and people are willing to help me.”

Workshops and training are great, but nothing can substitute for what real-life experiences can do to foster personal and professional growth. Career Connect gives people like Amber and Sara experiences in the competitive work environment, and that is priceless.

 

Check our Easter Seals national employment training and job placement assistance resources here.