Social struggles for teens with autism

by Beth Finke

Results of a study called Participation in Social Activities among Adolescents with an Autism Spectrum Disorder will come as no surprise to parents of teens who have autism. After studying more than 11,000 middle and high school-age students in special education, researchers at Washington University in St. Louis have found that teens with autism (especially the ones who have problems with conversational skills) are less likely than other students to spend time with friends or have a social life.

The thing I found interesting — and disturbing — about this study was that the adolescents with autism had more social problems than kids with intellectual disabilities, learning disabilities and speech impairments. Nearly half of the students with autism in this study said they never saw friends outside of school. Let me say that again. A majority, more than half, said they have never, ever been with a friend outside of school. A story on the Washington University newsroom site quotes Paul Shattuck, PhD, autism expert and assistant professor at the Brown School at Washington University:

“It appears that experiences with peers are more likely to occur one-on-one, and perhaps at home rather than in the community,” he says.

Shattuck notes that limited or absent peer relationships can negatively influence health and mental health, especially during the teen years.
“One mechanism for promoting social relationships is by fostering participation with peers in group activities such as clubs, scouting, or sports,” Shattuck says.

“Only one-third of adolescents with an ASD are accessing such opportunities, and there is an obvious need for greater supports and services to promote community inclusion for this population,” he says.

Social challenges are part of being an adolescent, but when you add autism to the mix the challenges can become even more complex. Easter Seals is a service provider. It is our job to support individuals with autism and other disabilities in their efforts to lead quality lives. Dr. Shattuck’s data serves as a reminder that we have a lot of work to do to ensure individuals with autism get the support they need to make friends and enjoy the rich social life that our culture associates with adolescence. Read the full study here.

The fight to improve funding continues

by Matt McAlear

As budgets tighten around the country often our youngest and most vulnerable populations are the first to feel cuts.

Easter Seals Bay Area has joined with our colleagues from around the country to do our part to make sure that the children we serve aren’t forgotten.

Our good friend and San Francisco Chronicle writer, Laura Schumaker, recently highlighted our efforts in her blog:

Earlier this month, Easter Seals released a new report Our Nation’s Children at Risk: A State-by-State Report on Early Intervention at its 2011 International Convention currently being held in Washington, D.C. In meetings with Members of Congress on The Hill , more than 300 Easter Seals volunteers, staff and families with disabilities shared both the report’s findings and a petition with nearly 40,000 signatures urging legislators to invest in young children.

Thank you Laura Shumaker for continuing to be a supporter and advocate!

Choosing gifts for kids with autism might be easier than you think

by Beth Finke

If you are trying to figure out what to buy for the child on your shopping list who has autism, I have good news for you. Picking out a special holiday gift for a child with autism is not as hard as you might think.

Children with autism have unique interests, just like everyone else. Some children with autism have very few interests at any one time, and the interests they do have can be very, very important to them. So if you are shopping for a child with autism, it might be best not to go “outside the box.”

Before choosing a holiday gift for a child with autism, ask him or her what he likes. Get ready to hear an earful! If you can’t ask the child directly, contact the parents — most are happy to let you know what their child is particularly fond of.

Trains? Wheels? Springs? Maybe they like bugs. Or maps. Some people think that if they are buying for a child with special needs, they have to find something unique or unusual. That’s not always necessary. When shopping for children with autism, you’re as likely to be choosing gifts at a hardware or office supply store as a toy store. And hey, that means you are more likely to avoid the crazy crowds. Happy holidays, and … happy shopping!

Toys “R” Us special toy guide is out

by Beth Finke

Once again this year Toys “R” Us has come out with its Toy Guide for Differently-Abled Kids, a free toy-selection guide for parents and friends of children with disabilities. Items featured in the Guide promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills.

I remember watching all the many, many holiday ads while my son Gus was growing up, wondering if any of the toys advertised on TV would appeal to him. We spent hours and hours searching catalogs, visiting toy stores, playing at music shops, filing through hardware stores, perusing gift shops, looking anywhere and everywhere to find a toy Gus might like, something he might want to explore.

Therapists told us it was good for Gus to be stimulated by different things. We gave him mobiles, wind chimes, tambourines — anything we could find that was colorful and made noise. By the time he turned 9 or 10, though, we just plain ran out of ideas. And as Gus grew, it was more difficult to muscle him in and out of stores on holiday shopping sprees. I still remember wishing for one place I could go for a list of toys especially good for kids with special needs. I was glad to find out a few years ago that Toys “R” Us decided to put together a list like this, and delighted to hear they’ve continued the holiday ritual.

Striving toward independence

by Crystal Ward

I am pleased to introduce Alison Knopp, Development & Public Relations Associate here at Easter Seals DuPage and the Fox Valley Region, as a guest blogger today.

Striving toward independence

by Alison Knopp

This year, Easter Seals DuPage and the Fox Valley Region partnered with senior photography students from the College of DuPage for the 12th Annual Photography Exhibit. This year’s theme was “Striving Toward Independence” and the photographers did an amazing job of capturing the joys and accomplishments of all 21 featured families.

Four children with autism were able to participate in the exhibit this year and each of their stories were captured in a unique and beautiful way.

Ten-year-old Traven was born at 28 weeks and spent the first year of his life in the NICU, ventilator, oxygen and feeding tube-dependent. Traven was also diagnosed with autism, and his family turned to Easter Seals DuPage and the Fox Valley Region for help. Thanks to the patience and dedicated hard work of his feeding therapist, Traven now understands his mouth, tongue and swallowing and is willing to eat a variety of foods. His independence is captured in his photograph which featured him riding a horse on his own.

Brothers Matthew and Benjamin also had a great time posing and smiling for the camera. Matthew was diagnosed with PDD-NOS at age three and received occupational therapy to help him improve his attention span, handwriting, self-help and social skills. Benjamin was diagnosed with autism at age three and has been receiving both occupational and speech therapy. He is more independent due to increased communication skills, self-help skills and confidence.

Ben, a fun loving, silly and energetic nine-year-old is on the Autism spectrum and has been receiving services at Easter Seals for many years. Through all of his hard work, Ben is currently able to read, do math, sit appropriately in class, dress and shower independently, make friends and communicate daily. He can be seen in his photograph running and playing in his favorite yellow shoes!

We are so proud to feature each of these families this year and highlight their amazing progress toward independence. To view the entire exhibit, check out the 12th Annual Photography Exhibit on the Events page of our website.

Air travel … with autism

by Beth Finke

The holiday season is here, which means a lot of us will be doing some traveling. With that in mind, a post on the Autism United blog about traveling by plane with a child who has autism caught my attention. The post points out that any sort of travel can be stressful for a child who has autism, but plane travel can be especially rough — you can’t make the airplane make a stop any time your child needs one! Here are some tips from the blog post to help make plane travel less stressful:

1. Inform the airline ahead of time that your child has autism.
It is always a good idea to inform the airline ahead of time of your child’s special requirements. This will give them sufficient time to advise the flight attendants and allow them to prepare ahead of time so that they may be able to better address your child’s needs.

Some families also prefer to advise the passengers who are within close proximity of their child’s condition. While doing so is completely optional, it helps a lot in the event that your child has a temper tantrum.

2. Have your child wear an identification card.
It is also a good idea to prepare some identification for your child to wear. This will come in handy in the event that he wanders off the airport and gets separated from you. It is also important that you include all the necessary information such as your child’s name, your name, address, and cellphone number. You can also choose to add as a note that your child has autism. This way, whoever sees him will be informed and can address him accordingly.
You can choose to print your child’s identification card and wear it around his neck with a lanyard or you can also opt to have it as a sticker and attach it to the back of your child’s clothing.

3. Bring some earplugs and headphones for your child.
When riding the airplane, do not forget to pack some earplugs for your child. This will help your child avoid sensory overload and will definitely come in handy during take off and landing.

If your child likes music, do not forget to bring his MP3 player. Load it with his favorite songs. The familiar songs will not only help him avoid sensory overload but will also help keep him calm.

4. Pack some of his favorite toys.
The best way to keep him entertained during the flight is to have some of his favorite toys with him during the trip. Familiar toys and games will not only comfort him but it will also keep his mind off the airplane’s less than ideal environment.

I still remember listening to author Dr. Stephen Shore giving the keynote address at the Easter Seals 2007 Training Conference. I was among the 400+ people in attendance for that speech, which was the highlight of the conference.

One thing I especially remember Dr. Shore describing during the talk was how much he loved take offs and landings during flights — he thought they were exhilarating and calming at the same time. With any luck, that will be the case with your child, too. The list above may come in handy for the time in-between, though. Happy flying!

Stream this play about autism and romance, live!

by Beth Finke

I just read a post on the LA Times Culture Monster blog about a new play about two young people with autism. “On the Spectrum” was written by veteran Los Angeles screenwriter Ken LaZebnik, who co-wrote the 2006 film, “Prairie Home Companion,” with Garrison Keillor.

The post describes the play as a story about the love -– and friction –- between a young man who tries to disguise the fact he has Asperger’s syndrome and a young woman who is proud of her autism. The playwright says that having nephews and a niece with varying degrees of autism sparked his interest in writing the play. It was also LaZebnik’s idea to cast an actress who has autism as the female lead. From the blog post:

The playwright said he had sent his script to Laura Robinson, who is autistic and recently earned a degree in animation from Loyola Marymount University, “just to get her response and make sure it seemed authentic.” She was enthusiastic, and it occurred to LaZebnik that Robinson might be able to play the part. She read for [artistic director] Reuler in June, “and he cast her on the spot.”

The play opens tomorrow night at Mixed Blood Theatre in Minneapolis and will be accessible worldwide to anyone with a computer, streamed in live video over the Internet. The blog post quotes LaZebnik saying that multiple cameras will be used for the Internet broadcast “to avoid the stasis of a single viewpoint and, he hopes, provide close-ups.” I’m tuning in!

Too many young kids left behind

by Kristen Barnfield

I was lucky to be among the 300+ Easter Seals volunteers, staff and families from across the country who visited Capitol Hill last week to deliver a very important message on early intervention. We asked every Member of Congress to invest more in young children with disabilities, delays and autism. And carried with us a petition with more than 40,000 signatures to prove we meant business and that many of you strongly support this issue. It was a pretty incredible day and experience.

On that same day, we also released a new report, Our Nation’s Children at Risk: A State-by-State Report on Early Intervention. It provides a comprehensive overview of the current state of early intervention funding (through Part C of IDEA) in each of the 50 states and the District of Columbia. The report also sheds light on how well each state takes care of its youngest children. As you might expect, the headline from our report isn’t glowing. The fact is, we’re just not doing enough for our nation’s youngest and most vulnerable children. Far too many infants and toddlers are being left behind — we fail to identify more than 1.45 million kids under age 5 with special needs each year — and many will never catch up.

Here’s an excerpt from Health Editor Kara Corridan via Parents magazine’s Goody Blog about the report:

Today Easter Seals, the nonprofit provider of services for individuals with autism and other disabilities, released a report that outlines how well each state takes care of its youngest children with special needs. To determine this, researchers looked at how much money every state is given to provide early intervention services through the Individuals with Disabilities Education Act (IDEA), Part C program. This program offers free services for families of children under age 3 with developmental disabilities or delays, and in October it celebrated its 25th anniversary, but it’s never been fully or adequately funded. Just 2.67 percent of children are enrolled in the program, but early childhood experts estimate that anywhere from 13 to 20 percent of kids under 3 could benefit from its services.

Overall, the Easter Seals report has a sad bottom line: In almost every state, infants and toddlers with delays don’t get the help they need, and they may never catch up. I went straight to the page for New Jersey, since that’s where I live, and was discouraged to see that our state receives $809,000 less in federal funding for early intervention services than it did last year. Virtually every state has seen their funding drop, though some states, like New Hampshire, have the same amount, and California, Virginia, and New York have actually gotten slightly more funding through Part C in the past year.

Want to do something about this? Support Easter Seals’ Make the First Five Count initiative and sign the petition to Congress opposing any more cuts to Part C — in your state and everyone else’s. And if you think your child might benefit from early intervention, talk to your pediatrician, or find an Easter Seals near you — they are here to help.

Thanks, Kara. We couldn’t have said it better ourselves.