Special joys, special challenges

by Beth Finke

Here’s an understatement for you: holidays can be difficult for families with autism. An article called Special Joys, Special Challenges in Bay Area Parent offers holiday tips and advice to help parents of kids with autism and other disabilities enjoy the holidays rather than dread them. The story quotes staff members from Easter Seals Bay Area:

Matthew McAlear, the vice president and chief program officer for Easter Seals Bay Area, suggests using role-play to give children practice ahead of time in dealing with new social situations. He also suggests they work together with parents to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.

Easter Seals Bay Area clinical supervisor Michelle Ficcaglia is also quoted in the story, encouraging parents to have their kids help plan for the trip themselves.

“Counting down a trip by marking off days on a calendar with your child is often very helpful,” says Michelle Ficcaglia, Ph.D., the clinical supervisor for the East Bay Autism Project. “Additionally, you can try to prepare your child for a plane, car or train ride by reading books about the mode of travel you will be using.”

The story features many other tips and ideas from Matt and Michelle, plus advice from other experts, too. As the author so wisely puts it:

Celebrating the season with special-needs children has its own set of challenges — as well as unique joys.

Apple takes a bite

by Patricia Wright

There’s been a lot of buzz going around lately about the wonderful apps on the iPad and iPod Touch for people with autism. The people who create these new technology tools promise increased communication, academic growth and creativity. In one of my past lives, I worked for an assistive technology company called AbleNet. I’ve always had a fondness for technology, and I think what I am most excited about with these new tools is the concept of Universal Design.

Universal Design implies that tools like the iPad and iPod Touch are accessible to everyone — including those with disabilities. In an article in the Wall Street Journal, Steve Jobs commented on the easy-to-use design of the iPad for people with disabilities.

Apple Chief Executive Steve Jobs said in an interview that he hopes the easy-to-use design of the iPad has helped children with special needs take to the device more quickly, but that its use in therapy wasn’t something Apple engineers could have foreseen.

“We take no credit for this, and that’s not our intention,” Mr. Jobs said, adding that the emails he gets from parents resonate with him. “Our intention is to say something is going on here,” and researchers should “take a look at this.”

True Universal Design benefits everybody — and we may be getting a glimmer of what Universal Design looks like with the iPad. But all is not rosy with the technology. The iPad may be close, but it really is not accessible for all learners. Example: Individuals with physical disabilities can not use switches to access all features on the iPad.

When it comes to individuals with autism, I am curious about the support that is provided for these applications. Communication companies such as Dynavox and Prentke Romich (two of the largest augmentative and alternative device companies) have trained speech and language pathologists on staff and dedicate thousands of hours and hundreds of thousands of dollars toward developing their communication devices and the software that supports communication. I am not sure if apps developed as an afterthought by individuals with no professional training have gone through such a rigorous design process. Can I be sure someone will be available to me for technical support if I experienced barriers while attempting to put the apps into practice? I don’t think so.

I love technology. I think the iPad and iPod Touch are great tools for people with autism. Most of us have not replaced our computer with these additional tools. We have simply added another piece of technology. Individuals with autism can truly benefit from the iTechnology, but for now, it should be in addition to their dedicated communication devices.

Writer looking for adults with autism between ages 15 and 65

by Beth Finke

I am pleased to introduce John Duffy as our guest blogger today. John is the father of a young man with autism and an associate professor of English at the University of Notre Dame.

Seeking interviews of adults on the autism spectrum
By John Duffy

I am writing a book on the history of autism and wish to include the voices, experiences, and perspectives of adult men and women on the spectrum. The book will trace the ways that the language used to describe, diagnose, and explain autism has changed from the 1940s until the present time.

I am interested in speaking with people who were born between 1945 and 1995. I am also interested in speaking with family members of non-verbal autistic adults.

Interviews will be semi-structured, meaning that I will come prepared with questions about childhood, family, work, and other topics but the person giving the interview may direct the conversation as she or he chooses.

Interviews will be arranged at the convenience of the person or people being interviewed. I am willing to travel or to conduct interviews by Skype or by email. The confidentiality of all participants will be respected. If you or someone you know might be interested in being interviewed, I may be reached at my Notre Dame office by phone at 574.631.9796 or by email at jduffy [at] nd [dot] edu.

Thank you!

Volunteering at Chicago Bears games

by Maurice Snell

During the course of the NFL regular season, Some staff
and parents of clients at Easter Seals Metropolitan Chicago have been volunteering to work at Chicago Bears games. We work the concession stands, and ten per cent of the proceeds goes towards our Adult Vocational program. Through our Autism Therapeutic School programs in Chicago and Tinley Park, Easter Seals Metropolitan Chicago provides opportunities for vocational training and meaningful work for adolescents and adults with autism and other special needs.

I’m proud to say that I’ve put my two cents in already and I’m ready for more! The first game I worked in was the October 24 game against the Washington Redskins. Another game I worked was the November 14 game against the Minnesota Vikings. The typical work day began with inventory: with lots of stuff to be counted. We had to count all of the food items, packages, cups and many other accessories before and after the game. Then it was preparing the food (cooking hot dogs, polish sausages, nachos, etc.) before the gates of Soldier Field open to the public. Once the gates open, it’s game time!

Thousands of fans swarmed into the concourse area looking for something to squelch their appetites. It was a madhouse at our concession stand, especially during halftime. We were extremely busy giving the customers what they wanted. I was extremely busy at my position as cashier. I kept calm and collected, processing different orders for the happy Bears fans. It was chaotic at times, but we were able to make it through the entire 60-minute game. And really, with all the time outs and other breaks, an NFL game lasts three hours!

The experience working at a Bears game can be nerve-racking at times, but we were able to raise lots of money going to a great cause. We’re fortunate to raise thousands of dollars for the Easter Seals Adult Vocational program. As an individual with autism, I believe in giving back. That is my mission being a part of Easter Seals!

Understanding Harry Potter and the Deathly Hallows

by Beth Finke

What can a Harry Potter movie teach us about autism? Ask James Williams, a young man with autism who gives speeches about the syndrome at conferences. The transcripts to all of the speeches James gives are available at his Web site — that’s where I found out how someone with autism could relate to the characters in Harry Potter books and movies. In his cleverly-titled speech, “Harry Potter and the Chamber of Autism”, James describes how Harry Potter sometimes has trouble approaching his friends. James can relate. He also relates to Hermione, who obsesses over wizardry, fixates on specifics and is often accused of being a know-it-all.

Most importantly, James says that Harry’s feelings of relief after being “diagnosed” as a wizard are similar to his own feelings of relief being diagnosed with autism. Before Hagrid told Harry that he was a wizard, Harry had no idea that wizards who are angry tend to use magic even if they do not want to.

“Kids with autism often make things happen that they can’t explain,” James says. “And if they don’t know they have autism, they don’t know why, no matter how hard they try, they are always getting in trouble.”

Harry did well when working with teachers who acknowledged and worked with his special talents and needs. James can relate. Reviews of the new Harry Potter and the Deathly Hallows: Part 1 say the movie isn’t for the casual Harry Potter fan — it makes references only Harry Potter devotees will understand. James Williams is in his early 20s now. He grew up with these characters. My hunch is that he will have no problem with this new movie. He’ll understand it perfectly.

Traveling with autism –avoiding the road blocks

by Beth Finke

Our family went on some pretty great vacations with Gus when he was little. Other vacations, not so great. Take the time we drove 150 miles to go to a Prince concert. We all loved the concert, but Gus was so stimulated by the music that he couldn’t settle down afterwards in our hotel room. Gus screamed. And screamed. And screamed. The front desk called. Neighboring rooms were complaining. One caller worried that a child was being abused in our room. It was miserable. With all the wonderful vacations we took with Gus — week-long trips to the ocean, a flight to Germany to visit my sister and her family (a niece came along to help us with Gus) — the one that sticks out in my mind is that miserable overnight after Prince.

With Thanksgiving on the horizon, I know a lot of families are gearing up for a road trip. So I was happy to dig up this article from the travel section of the New York Times highlighting tours and travel agencies catering to the needs of families with autism.

While most people look forward to a vacation with its new vistas, surroundings, food and routines, many families traveling with children with autism face a daunting task of providing some well-established routines to help their child feel secure. Long lines, masses of travelers, new schedules for eating and sleeping can throw off their child and make the trip less than relaxing.

The article chronicles families on trips where the destinations have made accommodations for children with autism. It also points out that Americans with all sorts of disabilities are vacationing in record numbers.

Yet for every parent who decides they’re better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who are determined to hit the road, particularly if there are nonautistic siblings in the equation.

Congrats to the resorts and hotels who are wise enough to go out of their way to educate themselves and their staff about autism. Goodness knows our families need a restful vacation trip as much — or more — as any other family does!

Teaching kids with autism about death and dying

by Nilda Morales

Read Nilda Morales’ biography.

I found Crystal Ward’s Making sense of death and autism post earlier this month very interesting. Here At Easter Seals Puerto Rico, we work with young children and adolescents with different disabilities who participate either at the early intervention program, the physical restoration program or our K-12 inclusive school. As part of our orientation / counseling / psychology program, we use different strategies to explain the concept of death.

When explaining death to the kids with autism, we work on the child’s comprehension of death just as we do with every other stage or challenge they will face in life. Death is a natural process, so there is no reason to keep it far from the usual topics. We urge families to follow some “pinpoints” to help the child’s understanding:

• Introduce the concept of death naturally.
• Make all explanations objective, clear, simple and concrete.
• Keep mystical examples out so you can avoid the risk of misguiding a child to think of death as an option to “rest” or reach a blissful world.
• Be sensitive and caring, but don’t be dramatic or unnecessarily morbid (dark, gloomy or melancholic).
• Keep your own fears out of range.
• Prepare and discuss a “what if” crisis management plan with the family network so you’re always ready to cope in case a loved one dies.
• If possible, make some “rehersals” so that you might feel more comfortable counseling, and so that you can make any necessary adjustments to the plan ahead of time.

The best strategy is to make the idea of death understandable before it happens. In the middle of the confusion and subsequent grief after a loved one dies (even if the death was expected) it is not easy to properly guide someone who has autism.

Our curriculum here at Easter Seals Puerto Rico includes a “Life and Death Training Strategy Module” that focuses on understanding the cycle of life and coping with the loss of a loved one. In future posts, I will give examples of strategies we have used to help children with autism understand the concept of death. We use different strategies, depending on the age of the child and the severity of autism. One thing for sure: with all our clients, we always explain death as part of the natural life process.

Employment research opportunity

by Patricia Wright

I love reading research. Yep, that makes me a big nerd but its true — sitting down with a professional journal is almost as exciting to me as sitting down with a good novel. Research informs my practice as an autism professional. I am obligated to provide those I serve with effective interventions. And the way I learn about effective interventions is through reading research.

I feel that if I want quality research published, I have to be willing to participate in research, too. I try and lend myself to appropriate research at local universities whenever I can, and I have always welcomed quality researchers into my work setting. And I really appreciate when researchers outside of the “autism community” are interested IN autism.

One of those researchers is Dr. Samuel Hunter. Dr. Hunter is in the field of Industrial and Organizational Psychology — a field that doesn’t overlap very often with the autism community. Industrial and organizational psychology is typically interested in what happens in the workplace. And as I’ve stated in previous blog posts here, having autism and being in a workplace are not always synonymous.

Dr. Hunter’s research is of particular interest to me, as the goal of his research is to learn methods and strategies that leaders and supervisors can use to increase the success of individuals with ASD at work. To answer this question he is interested in recruiting adults with ASD over the age of 18 who are currently employed in a competitive work environment for a phone interview.

If you are interested in learning more about Dr. Hunter’s research, or might be interested in participating, contact Alissa Parr by email at aparr(at)psu(dot)edu or by phone at 410-591-7252. We need more research about what we can do to promote employment for individuals with autism. I am hoping that Dr. Hunter’s research answers some of the questions of why individuals with autism have such a difficult time gaining and maintaining employment.

Helping adults with autism in the job search

by Bob Glowacki

If you read my most recent post, you know that Sue Russell (our VP of Community Engagement) has been helping a young man with autism hone his job interview skills. Elijah didn’t get that last job he interviewed for, but I’m happy to report that he hasn’t given up — he’ll be returning to Easter Seals Southeast Wisconsin for additional support.

At the same time, Sue has been working with a quiet young woman who has autism. This young woman also has a college degree and has been unable to get a job. Her educational focus and employment goals are to work in a library, but the local Division of Vocational Rehabilitation only suggests retail jobs for her.

This young woman’s communication skills are “hesitant.” She prefers a more structured and quiet working environment. Sue and our job developers immediately found an opening for an archivist position at one library, and a second position that might work at another library. They are working with this young woman to find a job she really wants. She says that for the first time, it feels like someone is really listening to her. She is finally excited about her job possibilities.

What do these stories tell us? Adults with autism may need help even if they have a college degree. It also reminds us of the untapped potential in our communities where skilled employees are still at a premium. Finally, it points out that a personalized approach is what it takes to find the right job for the right person. That’s the kind of individual approach we are building here in Southeast Wisconsin.

Making sense of death and autism

by Crystal Ward

I was so moved by a post I read on a New York Times blog that I thought I’d link to it for our Easter Seals and autism blog readers. The post was about a mother trying to explain death to her son, who has autism. Here’s an excerpt:

Months later, as I stowed away Mickey’s summer clothes, I noticed that he had taken all his photos of his grandfather and put them in the closet, facing the back wall. I returned them to his book shelf. A day later, they were back in his closet.  I asked him why he had put them there.

“No no no. No talking,” he said.

I understood. It is all I can do, some days, to look at those pictures myself.

The concept of death is such a tough, tough subject. But somehow the way Liane Kupferberg Carter writes about it in this essay is very sweet. After forwarding this story on to our parent liaison staff at Easter Seals DuPage and the Fox Valley Region, I thought, hey, why not share it with you blog readers, too. It’s a subject I think parents would really be interested in reading about.