Autism Spectrum Disorder is a developmental disability. Children and adults with autism have differences with social communication/interaction and exhibit restrictive and/or repetitive patterns of behavior. There is a wide range of ability among people with autism. Some people with autism need significant levels of support to ensure their health and well-being while others do not. There is no known cause of autism and no singular form of assistance for autism.
People with autism have differences in the areas of social communication/interaction and restricted/repetitive behaviors. A few examples:
Social Communication/ Interaction
Difficulty establishing or maintaining back-and forth conversations and interactions
Inability to initiate an interaction
Difficulty with shared attention or sharing of emotions and interests with others
Atypical eye contact, posture, facial expressions, tone of voice and gestures, as well as an inability to understand these
Lack of interest in other people
Difficulties in pretend play
Engaging in age-appropriate social activities
Challenges adjusting to different social expectations.
Stereotyped or repetitive speech, motor movements or use of objects
Excessive adherence to routines
Ritualized patterns of verbal or nonverbal behavior
Excessive resistance to change
Highly restricted interests that are atypical in intensity or focus
Hyper- or hypo-reactivity to sensory input or unique interest in sensory aspects of the environment
There is no single behavior that is always present in every individual with autism.
Inaccessible Hospitality: “What An Incredible Conference…That I Had To Leave Early”
Thursday, December 15, 2022, 5:07 PM
There I was, lying on the pullout couch less than 2 feet above the floor, where my mother and my fri…
There I was, lying on the pullout couch less than 2 feet above the floor, where my mother and my friend, Kathy, were strenuously bending over to pull up my pants, put on my shirt, preparing me for PRWeek.
My mom is a trooper. At 62 years old, she’s made countless trips out of town with me – for work, physical therapy, and the occasional vacation – and she’s always been my “number one helper.” But, lifting and rolling my 225-pound body is more than a one mama job. We are lucky to have Kathy.
There I am, lying on a pullout couch and in the Hoyer lift
Getting in and out of bed, or in this case a pullout couch, could be easier. Unfortunately, all the hotels in Chicago we contacted have beds on “platforms,” meaning there is no space between the bottom of the bed and the floor. Why is that important? Well, there is this piece of equipment – a Hoyer lift – that can assist my helpers getting me in and out of bed. Quite frankly, it’s the only way I get out of bed.
Because we couldn’t find a hotel that simply just had space underneath their beds, where the legs of the Hoyer lift could slide under – lifting and dropping me above the bed – I was stuck on the pullout couch.
And, as I mentioned, the pullout couch is literally only 2 feet above the ground. Not. Easy.
My mom was already fighting a strained back, this inconvenience certainly didn’t help – our four-night trip to Chicago, which included two days of a PRWeek conference, a night out with my coworkers, capped off by my first trip to an improv comedy show. It was going to be a great trip!
But, I had to leave early. It was just too much.
I have a great deal of empathy for my caregivers. Knowing that my mom and Kathy were straining so hard literally just to roll me over to get me ready for the conference, we didn’t have the energy to continue for any time after the conference. No dinner with my coworkers. No comedy show.
It was a great conference. I believe the Easterseals + Change for Balance duo gave one of the better presentations, and I made a number of new friends, but the experience was overshadowed by the inaccessibility of the hotel, and the fact that I had to skip time with my colleagues to go home.
Look, I’m one of the lucky ones, and I’m well aware. I have a good paying job, which allows me to afford bringing Kathy along. I have a supportive mom, who will travel with me when I need help. But, even this crew of experienced travelers and healthcare workers couldn’t take it any longer – we headed home.
Even my mother, one of the toughest and “let’s get this done go-getters” made a comment: “It’s no wonder many people with disabilities choose not to travel. This is really tough.”
And that is the reality. Traveling is really tough. Hotels don’t design with full accessibility in mind and airlines are not accessible for people in wheelchairs. Thousands of people with disabilities choose not to risk the travel, whether for work or for vacation, and stay-at-home where it’s safe, where it’s accessible.
And that’s not right. That’s not fair. It’s not accessible. But it’s the reality.
So, what will we do? Do we stay quiet, stay-at-home, and on the occasional burst of courage take a work or personal trip?
I don’t think so. Let’s get loud. Let’s rally for more accessible hotels and airlines. Let’s rally for accessibility.
I’ll keep on sharing my stories and I’ll keep being “loud.” I hope you’ll keep following.
The Federal Website for the Americans with Disabilities Act Got an Upgrade
Thursday, December 15, 2022, 10:01 AM
So much has happened during this holiday season that you may have missed this bit of good news ̵…
So much has happened during this holiday season that you may have missed this bit of good news — the U.S. Department of Justice announced it has launched a new and improved version of the Americans with Disabilities Act website.
I just gave the new ada.gov site a look –okay, a listen! –and the updated version of the website is really easy to get through and understand: it’s written in plain language, the navigation tools are easy to use, and the speech software on my talking computer read it all beautifully. The new site was designed to work well with mobile devices and features links that answer questions about everything from service animals to accessible polling places.
Check it out: visit ada.gov or call the Justice Department’s toll-free ADA information line at 1-800-514-0301 (voice) or 1-833-610-1264 (TDD).
You Might Find Something Accessible to Be Thankful for Within this List
Monday, November 21, 2022, 4:58 PM
This is my favorite time of year. I love reflecting on the year and recognizing what I’m thank…
This is my favorite time of year. I love reflecting on the year and recognizing what I’m thankful for. And then, once Thanksgiving is over, the days start leading up to New Year’s Eve, which symbolizes the closing of a chapter and the beginning of a new one. For me, a new year feels like a clean slate and a fresh start, an opportunity to look at it from a brand-new lens.
I started 2022 feeling cautiously optimistic. I wrote a post like this before last year, focusing on the pandemic. It was very therapeutic to write it all down — to think to myself, “Okay, it was a rough year, but I’m going to sit here and I’m going to find those silver linings.”
This year feels like a breath of fresh air compared to the last two. It wasn’t perfect — no year ever is — but sitting down and finding its silver linings, expressing what I’m thankful for, comes much, much easier in 2022. So here is my reflection in all its glory!
I’m thankful for my friendships. I wrote a post about this recently but truly, I can’t stress this enough. The first thing that comes to mind when I think of this year are my friends, especially the virtual ones. My friends are spread far and wide, and this year I strengthened so many connections and found routines in the day-to-day that really helped with my mental health. I had monthly movie nights with friends. I had virtual coffee dates on Saturday mornings. I had SharePlay sessions with a friend every time an album came out by an artist that we were both crazy for. These small, seemingly insignificant moments got me through some really hard times, simply because they were things that I was able to look forward to.
I’ve grown much more confident in my travel abilities. It’s been six months since my MetroLift experience to the airport and sometimes I still catch myself thinking about it. A year ago, there’s no way I would’ve felt confident enough to try that. I am an anxious traveler, and a year ago, I would’ve let that anxiety get the better of me and insist that we come up with a travel plan that does not involve relying on para-transit, maybe asking a friend to drive me instead. But now? I trusted that Juan knew the system, and I trusted myself that I was independent enough and courageous enough to try something new. And so I did it, and it went well, and I felt liberated enough to write about it.
I stayed in Houston for a month and it was a success! Juan and I have been in a long-distance relationship for so long that we knew that one of us would eventually need to relocate. I’d already fallen in love with the Houston area, but I wanted to make sure he and I could live under the same roof before making the big decision. During that month-long visit we had a lot of open and honest conversations about our relationship, cohabitation, and our expectations. And I did a lot of networking, too. I checked out the transportation system, the way strangers treated me as a person with a disability, and other things like that gave me a glimpse of what my life in Houston might be like. And I loved that life.
I’ve grown grateful to people who take the time to provide equal opportunities for blind and visually-impaired individuals, such as the creators of audiovault.net. This site provides free TV shows and movies guaranteed to be audio described. I prefer this over going to movie theaters — I’ve had far too many bad experiences at movie theaters (sometimes giving us the wrong audio description device, other times giving us a device that didn’t work and needed to be fixed). I’ve watched so, so many more movies this past year knowing I can count on audiovault to provide us with access to accessible content.
I’m thankful for my family’s efforts to include me. Example: during season 41 of the TV show Survivor, CBS started providing audio description. That means that every week now when I watch survivor with my parents, my mom turns on the audio description. That way, she no longer has to describe and can focus a bit more on the show, and I know precisely what’s going on in the show without needing extra help from family members.
Thanks in large part to the YouTube channel “Yoga with Adriene,” I now do yoga every day. I occasionally turn to Sara Beth Yoga. Both of these channels do a great job at describing yoga poses and, if you aren’t familiar with the practice, have beginner videos as well. Therapists have recommended yoga to me for anxiety, and ever since I started doing yoga every day with my mom, it has become part of my day and has done wonders for my mental health.
Lastly, I discovered a good (and very accessible) journaling app called Day One. I wanted to get back into journaling. This app allows me to journal whenever and wherever I am, and I love how it feels to take time to write down my feelings.
Gratitude is something I constantly work on. On bad days, I could always have the mindset that the entire day was awful, and “at least there’s tomorrow.” I’m learning now that there’s always something to be thankful for, even if it takes some time. I think that’s something we should all strive for.
I hope you all have a happy Thanksgiving, enjoy the rest of 2022, and have a hopeful, positive opening to 2023. Happy holidays!
It’s Not Political, It’s Access: The Disability Community Supports Easier Voting Access
Tuesday, November 8, 2022, 10:05 AM
While selfishly I’ve always thought people with disabilities – the community of which I identify – w…
While selfishly I’ve always thought people with disabilities – the community of which I identify – were more “thoughtful,” specifically in our opinion of access, now I can proclaim our thoughtfulness as fact!
As a Project Manager for Change for Balance, a boutique strategic communications company, and as a self-proclaimed “connector,” I brought together our client, Easterseals, with my friends at AARP with the idea of commissioning a voter survey among our two shared constituencies – people with disabilities and older Americans aged 50+.
And guess what? We did it! You can check out the full results of the Easterseals and AARP survey here.
But, if you’ll allow me to get straight to the results this “connector” found interesting, stick with me.
With strong bipartisan support – I just knew this would be true – people with disabilities aged 50+ support expanding voting access, including voting by mail, voting absentee, and ballot drop boxes.
While much of the media pits the major parties at odds on many issues, fundamental access to voting is a united issue for people with disabilities 50 and older. For a very diverse and intersectional population, that’s nice. Simply put, it’s not political – it’s all about access!
Tony Coelho, the esteemed former United States Congressman and primary sponsor of the Americans with Disabilities Act, puts it perfectly “Voting access is not politically motivated as it is supported by Democrats and Republicans alike. In that regard it’s like passing of the Americans with Disabilities Act.”
Another interesting result – and this applies mostly to in-person voting – is when given a list of multiple accommodation options, 43% of respondents say they utilize an accommodation when voting.
I’m not good with math, but 43% of what is expected to be 30 million people with disabilities 50+ voting in the midterm election is a lot! Those who require just a little extra help will cast their ballot.
While this survey reveals many other important issues to the disability and older American groups, including inflation and other pocketbook issues, a resounding number of people just want access.
Unfortunately, as discovered in previous conversations with my friends at Rutgers University, it’s likely there are a number of people with disabilities who don’t participate in the elections because of accessibility barriers. “If people with disabilities voted at the same rate as everyone else, there would be 1.75 million more voters,” said Lisa Schur, professor, and co-director of the Rutgers Program for Disability Research.
We know it, Rutgers reinforces it – at the end of the day, the disability community wants greater access, from restaurants to airlines to casting our ballots. And, when we have it, we damn sure will participate!
Two Members of Congress are Putting a Spotlight on Accessibility
Tuesday, November 8, 2022, 9:53 AM
Here’s why it’s cool to have a Senator who uses a wheelchair to get around: she’s an accessibility e…
Here’s why it’s cool to have a Senator who uses a wheelchair to get around: she’s an accessibility expert! Tammy Duckworth, our Senator here in Illinois, served in Iraq and lost both legs when a rocket-propelled grenade struck the helicopter she was co-piloting in 2004. After she won the 2017 election for Senator of the State of Illinois, an article in the Chicago Tribune pointed out that running a Senate campaign involves lots of travel and complicated logistics. From the article:
Duckworth said she and her staff have a pre-event checklist to make sure the site is up to their standards — and that means making sure even the bathrooms are wheelchair accessible.
“I don’t go to any place that isn’t accessible even though I have artificial legs that I can walk in; it’s on principle,” she said. “If someone in a wheelchair can’t get in it, I’m not going to do an event there because just because I can get in there doesn’t mean somebody else can.”
The article said that during her campaign Duckworth often heard from voters who question her ability to serve. A question about using a wheelchair in public during the campaign came up when she first ran for Congress. “I’m not ashamed I’m in a wheelchair. I earned this wheelchair,” she said. “I’ve always insisted it’s not something that we hide.”
A seasoned member of Congress now, Senator Duckworth joined Representative Sarbanes of Maryland last month to introduce the Websites and Software Applications Accessibility Act (S. 4998 , H.R. 9021)) in both houses of Congress. The bill will require employers, state and local governments, and private businesses to make their websites and applications accessible.
Much has been made about how people with disabilities benefitted from digital access during the COVID pandemic, but casual conversations I’ve had with people with visual impairments tell me how frustrated they’ve been with technology, the high number of web sites that are not easy to use if relying on speech software and the hours they’ve wasted trying to make it work.
I am blind, and my husband Mike is sighted. During the pandemic Mike has had to take over much of the on-line ordering we do, the forms we are asked to fill out on line, and the online streaming we do. I get a lot of messages in my in box about plays and concerts and lectures that are available on line free of charge, but when I give that a try, the links and buttons are not accessible – frustrating!
If passed, this new legislation will make it clear that the Americans with Disabilities Act applies to websites and applications. I already know that my Senator will be voting in favor of the bill — she’s the one who introduced it to the Senate! Now it’s time for me to take action and find out who my House member is and contact them. You can do the same by linking to the official U.S. House of Representatives web site.