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Libraries and Autism: Connected

Book puzzle 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."

Publicize your library's commitment to serving all members of your community."
Libraries and autism

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.

UPDATE:

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.’

UPDATE:

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

(Boston Herald)

"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.

Comments

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Hi, first time poster. I do not have anyone with autism within my immediate or extended family. We do have many disorders and diseases within my family tree. I do know people with children of autism and have seen what they put up with when it comes to taking their child outside in the general public (rude/mean people, people not understanding or not wanting to understand, etc.)

What I can say is this - unfortunately most people are self-centered. If it does NOT affect them in some shape way or form people will not learn about it. I have epilepsy. I’ve had to explain a thousand and ten times to the same people – do NOT put anything in my mouth (then I get to list the reasons why not). We are all humans. We tend to forget things that we don’t deal with on a daily basis. Even if you did hand out something like cards explaining the truth of the matter is that most people with toss them in the trash. That being said though – never stop advocating and teaching people about this. Eventually we can make a difference. :)

BLESSINGS.......We are "Our Children's Angels"......ADVOCATE, ADVOCATE, ADVOCATE!!!! NEVER GIVE UP!!!......

Public libraries have a front line seat for the autism epidemic. We plan programs for many types of patrons. It is because we previously did not have large enough population of disabled teens to plan specific programs. This fact in no way implies insenstivity or ignorance. In every public library like every other workplace are parents and relatives of children with autism. Public libraries should be applauded for their response to our community's needs. Librarians with autism relatives are planning these programs.

"New Jersey is really focused on making people with autism a priority in their public libraries."
I wouldn't say that. I would say that Fanwood and Scotch Plains are focused, because they have parent(s) in Fanwood/Scotch Plains that have worked with the library to create this. But I haven't seen many other libraries in NJ that are making any changes to accomodate autism. Has anybody else in NJ seen changes?

The normalization of autism comes from the way autism has come to be defined as a difference, social quirkiness or mild disability rather than the medical problem that it really is for many children. It's great that people want to be accepting of our children but many of us want the general public to be up in arms, demanding of the medical community: Why are there so many sick kids now?! and Find medical treatments to cure our children and treat their bodies!! (Sorry, but personally I don't think that cure is a bad word, one that not should not be uttered). I think that the general public think that we just want our children to be accepted and there is no awareness of the medical side of autism and the great desire many of us have to give back to our children what they had pre-regression.

"I think we are not winning. That doesn't mean we shouldn't keep fighting. But we have to find new ways to engage."
I agree with this. Personally I think we have to move from fighting the government so much to getting the general public on our side and fighting for us. How is the general public moved? Emotion, movies, tv, songs, trends, catchy slogans, celebrities. Over the years I have heard hundreds of stories of regression. It's very easy for anybody with any bit of a heart to hear these stories and understand that autism is NOT NORMAL, that it is TRAGIC. But, the general public is not hearing these stories of regression much. They are hearing identify, identify, identify, identify, identify, early intervention, acceptance.


As always, great points, Anne.
I honestly don't think the average citizen (who isn't personally affected by autism) knows what to do or say anymore. There is so much conflict within the autism community at large, between those who believe vaccines injured their child and those who view autism in the way the neurodiversity community views it, that I'm getting the impression that people are too scared or unsure about what to say about it at all anymore, for fear of offending autism parents or caregivers or individuals with autism.

I think it might be worthwhile to maybe come up with some sort of pre-printed card we could hand out to people in the community - librarians, cashiers, etc. - something along the lines of "Thank you for your understanding and assistance with my child (or sibling,friend, etc.) with autism today." And printed on the card could be maybe three simple, concrete ways in which the person could be of further assistance, such as calling upon the CDC (or whatever) to look more closely into vaccine safety issues, or contacting their political representatives to, for example - like Ebcala is suggesting), request that Congress more closely examine the Vaccine Injury Compensation Program, or even something as simple as recommending expectant or new parents to carefully research vaccines prior to accepting them for their infants, along with a web site or two.

I think it would be beneficial for all of us in the autism community to express gratitude toward anyone 'out there' who does reach out and try to help, because God knows we don't need anymore judgment and criticism than we already get. But I also think if we provided a few concrete actions that your average citizen could take, we would be moving in the right direction toward slowing down and eventually stopping this tragic epidemic.


From "across the pond":

In 1993 my child was given a provisional diagnosis of ASD (confirmed two years later). The consultant paediatrician* told me "I've no doubt you'll be in the library as soon as you can" (he had summed me up accurately after only two consultations). The next day I found maybe five books on autism in the childcare section, one of which was Bruno Bettelheim's doorstop tome "The Empty Fortress" (another was a mother's account called "For the Love of Anna"). Since then each year has seen more books published on how to cope with autism spectrum disorders (and Asperger's Syndrome). If the need for information wasn't there, then the books wouldn't need to be published would they? Clearly, the publishers expect to at least clear their costs in publishing these books.

If anyone knows a friendly librarian with an interest in autism/Asperger's perhaps they would be kind enough to do some basic research on first publication dates of books on autism/Asperger's. I have an idea this would be of interest to a great many parents and professionals.

*The term "paediatrician" has a different meaning in the U.K. General practitioners deal with ordinary conditions and refer patients to relevant consultants (who may not be paediatricians) when necessary.

Anne, I entirely understand your frustration over the "normalization" of autism, but I honestly don't think these librarians and other service professionals are complicit in that. Librarians didn't cause autism, and they can't cure it or prevent it. They are doing all that they can do, which is to make a sincere effort to accommodate autistic patrons, and we should applaud that. If the video says that librarians should do more to "truly serve this growing population," then it's explicitly saying that autism has not always been with us, it's not just a matter of better diagnosis, it's a problem that's growing. We should be glad they're sending that message.

I checked WorldCat, and found that 600 libraries stock "The Age of Autism," compared with about 900 for "The Panic Virus". When you consider that "Panic Virus" was puffed in dozens of reviews while "Age of Autism" was virtually blacked out by the media, I'd say that librarians are doing a pretty good job of stocking books that present our perspective. In fact, if I recall correctly, practically the only positive review of "Age of Autism" was published in Booklist, the journal of the American Library Association.

We have plenty of real enemies. You really don't want to exhaust yourself fighting our friends.

Mark Blaxill does not think we will win?
Then there will be no human race in the near future.
That is where this is all leading.
We have no choice but to win, or to go quietly into the night.

On December 10, 2010, Dan Olmsted and Mark Blaxill spoke at the U. of MN. I asked them how much longer we'll ignore the epidemic. How long can we pretend that it's acceptable to have one percent of children with autism, including almost 2 percent of boys.

Here was Mark's response:

"Denial can go on for a long time. The denialists can win. You can find these examples where the medical industry has 'normalized' an epidemic and successfully persuaded themselves that either a new disease has always been with us or some old disease has disappeared and it's inconsequential that it did. Denial and the ability of the medical industry to write the rules about how we interpret trends are both powerful forces. And there's a real risk that we'll 'normalize' autism. We'll deny the epidemic. We'll declare it a normal condition of mankind from the beginning. And there are powerful forces -- industrial forces, political forces -- that want to write history that way.

"I started all this out thinking that if we just wrote down the facts and shared the evidence, if we did it in a professional and responsible way, well-meaning people would listen and they'd do something about it. And I was sadly mistaken. I think all of us are learning that powerful forces like the ones we're facing are often blind -- blinded by their own interests. It's not that they're evil or malicious, [although] some of them might be. I'm certainly willing to accept that notion. But the vast majority is more content not to confront the problem and it's our job as a community to force them to. It's one of the reasons we wrote the book. It's one of the reasons we write the blog. It's one of the reasons you e-mail, Anne. I think we are not winning. That doesn't mean we shouldn't keep fighting. But we have to find new ways to engage."


My story that was published today clearly shows that. Not only are libraries, schools, babysitters, and industry adjusting to the needs of people with autism, but recent news stories showed employees at a theme park were getting autism training. Also reports from all over the country tell us about autism-friendly movie theaters.

And as this recent Huffington Post story shows, churches are also adjusting to autism. http://www.huffingtonpost.com/2011/04/30/autism-in-the-church-grow_n_855677.html

This story was just out from the Hartford Courant: Lake Compounce Promoting Education About Autism Among Employees And Guests--Park Staff Receives Special Training Each Year http://www.courant.com/health/connecticut/hc-lake-compounce-autism-speaks-0702-20110701,0,4384821.story
"Lake Compounce theme park became aware of the challenges and special needs of people with autism about five years ago and has since been teaming up with the New England chapter of the Autism Speaks organization to help autistic children and adults feel welcome and comfortable at the park.
"Park manager Jerry Brick said he was approached in 2006 by Noreen Simmons, an Autism Speaks volunteer who frequently visits the park with her family, including her autistic child. Simmons suggested that Autism Speaks could teach park employees how to identify signs of autism in a person who appears to be acting out. . . .
"Each year since then, a group of about 100 Lake Compounce employees has attended an Autism Speaks "boot camp" at the start of the park season. They learn to recognize signs of autism and how to respond to the needs of autistic guests. These park employees then train the park's other 1,300 staff members.
Atlanta, GA: AJC, Cars 2, Harry Potter are Sensory Friendly Films
http://blogs.ajc.com/momania/2011/06/28/cars-2-harry-potter-are-sensory-friendly-films/?cxntfid=blogs_momania
"Three metro Atlanta AMC Theatres and the Autism Society have come together to host Sensory Friendly Films for the autistic and their families in July."
Ann Arbor, MI: Rave hosting movies for children on autism spectrum or with disability
http://blogs.ajc.com/momania/2011/06/28/cars-2-harry-potter-are-sensory-friendly-films/?cxntfid=blogs_momania
"Rave Motion Pictures has introduced a new monthly series of movie screenings called 'Sensitive Sensory Cinemas,' geared to families with children who have special needs-specifically, those who have a disability or are on some stage of the autism spectrum.

"In an announcement of the series, Jason Wiles, lead manager at Rave, wrote, "We realize that bringing children with autism to the theater can be quite a challenge. Each child reacts differently to the normal conditions of the theater, darkened theaters, and loud sound systems. These shows are shown at a light and sound level which will be more inviting for these families."

Evansville, IN Courier & Press: A trip to the movies, without the rules
http://www.courierpress.com/news/2011/jun/13/a-trip-to-the-movies-without-the-rules/
"The theater lights were up and the sound turned down.
"No one so much as batted an eye when 'Kung Fu Panda 2' began and several children continued to talk and laugh, children like 10-year-old Bradley Blair.

"Bradley, like many of the other children in the theater that Saturday morning, has autism, a complex neurodevelopmental disability that affects his ability to communicate and interact with those around him. For many people affected by autism, sitting still and keeping quiet through a normal movie screening can be something of a chore."

Madison County Courier (NY) Hamilton Theater Hosts Sensory Friendly Screenings

"Hamilton Theater will host a series of sensory friendly screenings this summer for moviegoers affected by sensory processing issues. The series kicks off Saturday June 25 at 12:30 p.m. with the new Disney feature, Cars 2.

"Children with Autism often experience normal sounds as too loud, normal textures as too uncomfortable, and high contrasts between dark and light places as alarming. In addition, they may need to move and talk out loud during the showing of a movie.

"This is true for many children without autism as well. Sensory Processing Disorder can occur by itself, or in conjunction with Attention Deficit Disorders and other neurological differences. Families with children who become distressed in a movie theater, or who move and talk out loud during a show, will avoid attending movies altogether."
The Columbian (WA): Movie screening will be sensory-friendly
http://www.madisoncountycourier.com/2011/06/22/hamilton-theater-hosts-sensory-friendly-screenings/
This movie is designed to cater to people who have sensory-processing problems as well as those with verified mental disorders such as epilepsy or autism. Sensory-friendly movies are presented with dimmed lights rather than no lights, doors open 30 minutes early, the sound is turned down and getting up out of your seat is acceptable.

Also, gluten-free and gluten-free, casein-free snacks are allowed in the theater.

Oak Creek WI: Film Series Geared Toward Special-Needs Children
http://oakcreek.patch.com/articles/film-series-geared-toward-special-needs-children
"Again this summer, South Shore Cinema will hold movie showings specifically designed for families of special-needs children with autism or other challenges.
"The 'Reel Movies for Real Needs' series offers family films with a lower sound volume and brighter lighting for families who may not feel comfortable attending regularly scheduled shows, according to a Marcus Theatres news release."

Sounds like we're getting pretty used to having autism as just another part of the human condition.

"the library is a good source for acurate information" --I say, "make sure you donate some of our more accurate information books to your local library"
like Vaccine Epidemic, Age of Autism, Evidence of Harm , All I an Handle. Our library will attach a dedication and donor
name on the inside of the book.
What comes to mind for me with this wonderful piece by Anne is that libraries all have something in common besides books--and that's the word SSSSSHHHHHHHHHHHHHHHH(with index finger over mouth) It brings to mind the majority of the population that say SSHHHHHHHHHHHH to the real increase in numbers without caring for the reason why.
Maurine

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