By Anne Dachel
June 25, 2011, I found an interesting piece on Google News about libraries serving the needs of disabled young people, especially those with autism. (School Library Journal)
“Working with disabled teens isn't easy, but you can learn how to adapt programs, build relationships, and partner with caregivers and teachers to provide the best possible service for this group, said a panel of librarians Saturday during the ‘Serving Teens with Disabilities’ session at the American Library Association's annual conference in New Orleans.”
New Jersey is really focused on making people with autism a priority in their public libraries.
“Meg Kolaya, director of New Jersey's Scotch Plains Public Library, and Dan Weiss, director of the neighboring Fanwood Memorial Library have had great success with the collaborative shared-services approach they've championed since 2005.
“One outcome of this partnership is the award-winning ‘Libraries and Autism: We're Connected,’ a customer service training video (JointLibrary.org), primarily to help their library staff to more effectively serve autistic kids of all ages and their families.
“The video and website focus on what librarians need to know about autism and empower them to offer more inclusive and universal service to this growing and underserved group.”
Don’t get me wrong, I think it’s a great idea that people are working to make libraries autism friendly. Watching the video made me wish that my son’s teachers had seen it back in the early days of the epidemic, when no one had heard of autism.
There was something very concerning about this approach to autism however, and I especially felt it watching the short video.
In the article, I found the explanation, “With the population of those with autism spectrum disorders aging…” programs should be aimed at teens and transitional young adults. It made me realize that the aging out of a generation of kids with autism seems to be as acceptable in the minds of the American Library Association as the epidemic number of children with autism.
In the video, no one questioned anything about autism. There was a surreal feeling that these people were indoctrinating the viewers to accept the claim of “better diagnosing.” Two library directors talked about autism at the beginning of the film, both with an air of total acceptance. We were calmly told that the rate for autism was "one in every 150 people nationally, and here in New Jersey, one in 94." Having the old national rate of one in 150, instead of one in every 110 children, made the rate of one in 94 in NJ even more jaw-dropping, but the narrators seemed determined to show no alarm over anything.
We were instructed that this was a short informational video on "what you need to know about autism... so you can truly serve this growing population.
“If you have 100 people in your library, the chances are good that at least one or more will have autism spectrum disorder." While this was said, we were shown middle-aged patrons at a library.
Autism was defined simply as deficits in communication and language and problems with behavior.
There was a great deal of emphasis on "people with autism," rather than "children with autism,” inferring that this is an adult disorder as well. However, the autistic participants in the video were all young.
The video included information like, "Autism is not contagious and people with autism should not be looked at unkindly
We were told about the characteristics of autism so employees can recognize affected individuals.
We learned that some people with autism have speech, then lose it and others never learn to talk.
In addition, the following comments were made:
“Bright lights or textures may be disturbing. Impulsivity, humming, rocking, flapping might be seen. It's best to ignore these behaviors.” However, "some of the calling out or screeching or screaming may be something you really need to intervene with because it does bother other people. I think there are a few reasons why library staff should intervene. That might be when a behavior is embarrassing or stigmatizing for the individual with autism. Or the person with autism is about to hurt themselves or someone else."
"Here are some situations that shouldn't be ignored: destructive activity such as banging on a keyboard or tearing pages of a book, violent tantrums, loud or inappropriate interaction with other patrons, and inappropriate sexual behavior.”
"How can you best handle unsafe or disruptive behavior? Here are some things you can try: Offer to help the caregiver and be empathetic. You might try sitting next to the person with autism. Sometimes your quiet proximity can help refocus. Another tactic would be to redirect their attention.”
"If you observe that someone's upset, it might be a good strategy to ask some common social questions. Questions you might ask anybody else. A
lot of individuals with autism have practiced these responses to social questions so when they hear them, they're going to respond. And that could actually be a positive behavior which then decreases the inappropriate behavior.
"You might also go to nearby patrons who appear to be bothered and quietly offer to relocate them.
"If your strategies are not working and the person is in danger of hurting him or herself, hurting someone else or destroying property, handle it as you would in any emergency by contacting security or calling 911. Do not touch the individual and avoid standing too close."
"I think with increased awareness, we can be less fearful and more understanding and more patient."
"It's always easier to prevent problems rather than to correct them. Building relationships with families with autism will be mutually rewarding. Here are some suggestions:
“Never be condescending or blame the caregiver.
“Be aware of your own attitudes, comments and body language. Avoid being judgmental, don't consider a caregiver as an intermediary as it tends to make the person with autism feel unaccepted, incompetent, and helpless. This is an opportunity for you to send a message to other patrons that your library welcomes all individuals.
"I think the library staff can begin to be good ambassadors by first having an understanding of autism and being an advocate for all patrons, but particularly patrons with autism. I think they should always appear confident and knowledgeable.
"When someone's acting out in someway or looks a little bit different, a lot of times, what do you do? You look around to see how everybody else is reacting. And if the other library patrons can look around and see that the librarians are saying, hey this is no big deal; they're taking it in stride, I think that will be a great cue for the other patrons' behavior to do the same."
"Here are a few other tips: An individual, parent, or caregiver may be coming to the library for the first time. Provide ways for it to be comforting and worthwhile. Give them a tour or direct them to areas of interest. Become well-informed about the location of autism-related materials, accommodations made within the library for individuals with autism, and the resources and amenities that are available for patrons with various disabilities."
"It's important for a library to have autism specific information available. Autism is so prevalent and libraries are always a good source for accurate information, complete information. Not only for parents who have children with autism, but for professionals and extended family members."
"We have created a book called, This is my library, which you may customize for you own building and services. Offer it to caregivers so they can read it with their child before their first trip to the library."
"Because people with autism a lot of time, really need to know what to expect. They like structure, they like routine, and by having this book, you can pre-teach what the structure and routine is going to be of a library visit. I think it's a great thing."
I have mixed feelings about this video. While I endorse the message one hundreds percent, I worry about the complacency society shows when autism is the issue. Why do so many people ask for awareness and acceptance and not demand answers? And if no one is worried about autism, will anything ever really be done to address it? Will we just seek to accommodate people with autism?
I know police officers and emergency response people are being trained to understand autism with films just like this. Teachers receive credit for learning about autism. Will businesses that deal with the public now routinely make employees learn about how to handle someone with autism? Will workers at Denny’s and Delta Airlines have to be certified in autism? Will bus drivers, barbers, and park rangers attend autism workshops? And as these children reach adulthood, will we just forget what the world was like before hundreds of thousands people had autism in the U.S.? Our schools have adjusted and it looks like everyone else will have to do the same.
The only thing is, these disabled individuals will be aging into a world that doesn’t really have places for people with autism. They will need to do more than go to the library. They’ll need jobs and residences.
Not only will we as a society need to accept people with autism, we’ll need to provide for them and the cost is going to be catastrophic. No one is sounding any call to action regarding this upcoming crisis. And while we watched individuals on the training film successfully maneuvering around the library, there is a large number of affected children so disabled that they couldn’t possibly spend any meaningful time in a public library.
The type of autism shown on films like this don’t really help the public understand how severe the needs of an autistic individual can be. It’s easy to believe that people like this have always been around—with a different diagnosis. That’s the scary message in this video.
Just as I finished this story, I found another frightening example of the acceptance of autism. On June 28, 2011, the Courier in Waterloo, IA published, Training sessions help educators teach autistic students, (WCFCourier.com) about teachers getting help in understanding autism.
“Learning to work with autistic children can help educators be more effective in teaching and managing their classrooms.
“That's what drew a group of 24 teachers, paraeducators and other school support staff to autism training sessions last week at Cedar Heights Elementary. It was the second of two week-long sessions put on by Area Education Agency 267.
“The educators heard lectures on how best to teach such students and integrate them into the classroom.”
One speech and language pathologist in the Waterloo Community Schools talked about why she decided to participate in the training. She said it was ‘because I am getting more and more students with autism in the (school) building. Learning about it is just incredibly helpful.’
In another news search I found this short announcement on June 30, 2011, (SpecialNeedsBabysitterWorkshop) in the news from Westchester County, NY.
“The WJCS Autism Family Center is offering a workshop in Babysitting Children with Special Needs for Teens (ages 14-21). Participants will learn various tools to use with special needs children, strategies for challenging behaviors and how to keep themselves and children safe. Beginning July 12, the three-week workshop will meet on Tuesdays from 3 – 6 PM at the WJCS Autism Family Center, 845 North Broadway, White Plains. There is a $40 fee. Those who complete the training and two hours of volunteer work will receive a certificate and be referred to parents seeking babysitters for special needs children.”
Update from the Boston Herald, July 1, 2011:
Co. pumped up by autism vest
"An Amherst start-up hopes to help improve the quality of life and care for some of the estimated 1 percent of U.S. children who have autism.
"In May, Therapeutic Systems launched the Vayu vest, a wearable vest that applies deep pressure to the body — akin to a firm hug — to help soothe and ground autistic children who suffer from sensory processing disorder.
“'We see this as something that can help them self-regulate and cope with their anxiety so they’re available to attend, to learn, to function, to participate,' founder and CEO Brian Mullen said." . . .
Though its earliest prototype was for adults, the company decided to initially focus on kids.
“Early intervention is the big push,” Mullen said. “The earlier they can get intervention, the better the results seem to be in helping children with autism.” . . . .
"The vest, which sells for $2,000 and comes in three sizes, is fabricated by medical device manufacturer Dielectrics Inc. in Chicopee. It has a removable hand pump that allows the child, his parent, occupational therapist or other caregiver to inflate or deflate the internal vest “bladder” to apply the desired level of deep pressure to the child."
It seems we’re a country where no one cares what causes autism. No matter how bad the numbers get, we’ll simply adjust.
Anne Dachel is Media Editor for Age of Autism.