Teen Librarian Toolbox
Inside Teen Librarian Toolbox

Autism and Libraries

The most recent statistics from the CDC indicate that 1 out of 88 children are being diagnosed with Autism.  Every day we are encountering teens on the spectrum in our school and public libraries.  The question we must ask ourselves is this: What are we doing to meet their needs?
 

Teen Issues: Autism and Libraries
With a look at some books that have characters on the spectrum

On the Spectrum and @ Your Library (Guest post by Matthew Ross)
A library director and father of a child on the spectrum, Matt Ross shares some things libraries can do to make the library experience better for all.

Teen Issues: Teens and Autism and Future Horizons
Future Horizons is a publishing house dedicated to raising awareness and helping to meet the needs of those on the spectrum, their parents, educators and more.

Autism & Libraries: A Q&A with J. D. Kraus
Author J D Kraus shares his experiences as a teen on the spectrum and shares things libraries can do to meet the needs of those on the spectrum.

Teens and Autism: What does it mean to be “typical”?
Teen Reviewer Cuyler Creech shares his experiences as the older brother of a beloved young sibling with Down’s and on the spectrum.

Atticus Was Right: The remarkable story about a boy with autism, a bully, and a book and how books can raise awareness and help readers develop compassion (Guest post by Amianne Bailey)

Book Review: Perfect Escape by Jennifer Brown (sibling with OCD)

The Power of Reading: Stuck in Neutral by Terry Trueman

Mr. Internet: Teens on the Spectrum and Online, a guest post by Lyn Miller-Lachmann


My novel Rogueportrays a young teenager on the autism spectrum who has come to rely almost exclusively on “Mr. Internet” to learn about the world, especially after she gets suspended from school for attacking a bully. Through Mr. Internet, Kiara has diagnosed herself with Asperger’s syndrome, learned how to fix her brother’s bicycle, and found out that the neighbor boy who she thought was her friend may only be using her for his parents’ drug operation. In her online searches, she has discovered some useful information, some information that may or may not be true, and some information that she’s ill equipped to handle.
Like much of Rogue, Kiara’s online activities are drawn from my own experience as someone diagnosed with Asperger’s. Children (and adults) on the autism spectrum are often drawn to the computer and to seeking information online. I know this process firsthand, because even though I have a Masters in Library Science, I would prefer to stay in my own home, where I feel comfortable, rather than go to the library and try to explain my information needs to a stranger. At the same time, I enjoy looking up information for others and will persist in finding answers with reliable sources to back them up long after most people would have quit or settled for half an answer.

This past June at the ALA conference in Chicago I had the pleasure of meeting Dr. Lesley Farmer, the foremost authority on Internet citizenship for young people on the autism spectrum. She had a table at the Diversity Fair, and we talked about the promise and the perils of the Internet for tweens and teens with autism. While we spoke about the dangers, specifically of young people being taken advantage of by scammers and predators, she also emphasized the Internet as a place where those young people can gain self-confidence as well as knowledge and become leaders among their peers.
Leaders? Maybe she was going a little too far with her optimism.
While I know that information-seeking online offers comfort and solitude, I expressed my concern that we can become too comfortable—thus further isolating ourselves. My nephew, who has also been diagnosed with Asperger’s, spends entire days alone in front of the computer, keeping up with relatives and fellow hobbyists through email and Facebook. I know I would do the same thing, if I didn’t have other responsibilities. Time spent in front of the computer is time away from other people, and no matter how much one reads advice online (as Kiara says, “when I go upstairs to ask [Mr. Internet] how kids with Asperger’s syndrome can find friends, he has 255,000 answers for me”), hard-won social skills wither in isolation.
Aware of these concerns, Farmer advises librarians and others who work with young people on the spectrum not only to teach them the principles of “digital citizenship” but to prepare them to teach others. She argues that young people with autism spectrum disorders can become model digital citizens because of their comfort with machines and technology, their attention to detail and rules, and their sense of what’s fair. Once children and teens with autism have a clear understanding of rules, safe practices, and the need to examine information critically, they can teach others those same rules, practices, and processes of critical thinking. In teaching, knowledge is reinforced as social skills develop. 
Farmer suggests using simulations and role playing to teach digital citizenship and to rehearse ways the young person can in turn teach peers. Some of this is already being done with great success. For instance, young writers on the autism spectrum have found an outlet in the online site Figment not only for their stories but also for using their technology skills to help others. Around the time I met Lesley Farmer, I also received this inspiring email from Figment co-founder Nicole Valentine, describing the day the staff invited the site’s most active users to a workshop in New York City:
Well, one mom kept sneaking over to the door to spy on her teenage daughter. I thought it was a classic case of helicopter parenting, but then I noticed how emotional the mom was getting. I asked her if everything was okay. She looked at me with tears in her eyes and said her daughter had Aspergers and she had never seen her hold court like this before. I peeked in with her and indeed, her daughter was THE mayor of Figment. I said, “you know, she’s our most popular user. She has hundreds of followers and is really active on our message board.”
She told me she had never seen her daughter say more than three words to anyone in a group situation. We both stood there for a moment watching this girl lead a discussion about how to improve the site. I stood there and I cried along with her mom. It was my single best day on the job. We won an LATimes Book Award and I got to go to that ceremony and accept the award, even that didn’t beat that day. It was the day I knew my work was changing kids lives.
If you would like to help young people on the autism spectrum use the Internet more effectively, become good digital citizens, and become leaders among their peers, here are some resources:
Lesley Farmer has a wiki resource on Digital Citizenship at: http://k12digitalcitizenship.wikispaces.com/. Her book, Library Services for Youth with Autism Spectrum Disorders, will be published by ALA editions this fall.
For more information about the teen book discussion and writing site Figment, visit www.figment.com.
Lyn Miller-Lachmann is the former editor-in-chief of MultiCultural Review and the author of resources for educators and fiction for teens. Her young adult novel Gringolandia (Curbstone Press/Northwestern University Press, 2009), about a teenage refugee from Chile coming to terms with his father’s imprisonment and torture under the Pinochet dictatorship, was a 2010 ALA Best Book for Young Adults and received an Américas Award Honorable Mention from the Consortium of Latin American Studies Programs. Her most recent novel is Rogue (Penguin/Nancy Paulsen Books, 2013), a Junior Library Guild selection. When she isn’t writing fiction, Lyn is the co-host of a bilingual program of Latin American and Spanish music, poetry, and history on WRPI-FM, a blogger, and a Lego builder. She reviews children’s and young adult books on social justice themes for The Pirate Tree (www.thepiratetree.com). For more information and cool Lego pictures, visit Lyn’s website, www.lynmillerlachmann.com.

April is Autism Awareness Month

April is Autism Awareness Month 

The most recent statistics from the CDC indicate that 1 out of 88 children are being diagnosed with Autism.  Every day we are encountering teens on the spectrum in our school and public libraries.  The question we must ask ourselves is this: What are we doing to meet their needs?


Teen Issues: Autism and Libraries
With a look at some books that have characters on the spectrum

On the Spectrum and @ Your Library (Guest post by Matthew Ross)
A library director and father of a child on the spectrum, Matt Ross shares some things libraries can do to make the library experience better for all.

Teen Issues: Teens and Autism and Future Horizons
Future Horizons is a publishing house dedicated to raising awareness and helping to meet the needs of those on the spectrum, their parents, educators and more.

Autism & Libraries: A Q&A with J. D. Kraus
Author J D Kraus shares his experiences as a teen on the spectrum and shares things libraries can do to meet the needs of those on the spectrum.

Teens and Autism: What does it mean to be “typical”?
Teen Reviewer Cuyler Creech shares his experiences as the older brother of a beloved young sibling with Down’s and on the spectrum.

Atticus Was Right: The remarkable story about a boy with autism, a bully, and a book and how books can raise awareness and help readers develop compassion (Guest post by Amianne Bailey)

Book Review: Perfect Escape by Jennifer Brown (sibling with OCD)
A look at life with a sibling that has OCD, which is often present in those on the spectrum.

The Power of Reading: Stuck in Neutral by Terry Trueman
More on how reading can help raise awareness and develop compassion. 

Check out this fantastic resource entitled Libraries and Autism: We’re Connected

School Library Journal: The Voices of Autism

Teaching Empathy: The Clever Stick by John Lechner, a tool for discussing Autism

The Clever Stick is a quiet fable about a stick, who has always been clever and been able to think many wonderful thoughts. But the stick has one problem – he can’t speak. So he cannot share his thoughts with any of the forest creatures he meets.

Regular readers know, I care about Autism.  Three of my nephews are on the spectrum, severely low functioning, non verbal.  But one of my nephews does the most amazing thing using those little wooden
blocks with letters on them we all played with as kids: he can write words.  And he can draw.  And these two simple little tools allow him to communicate in ways that are different than the norm.  But they let us know that he is more than what it seems.  In fact, each of my nephews have their own ways of communicating.

The Clever Stick is a short, simple fable about a stick.  The stick is smart, but nobody in the forest knows it because he can’t speak.  Until one day the stick looks down and realizes he is leaving lines in the dirt.  These lines become pictures, a way of sharing what is going on inside.

We often talk about using picture books with tweens and teens, and I can’t recommend this one highly enough.  It is a great tool for helping tweens and teens develop some empathy for those who are different, like those on the Autism spectrum.

For more about The Clever Stick, and a teaching guide, visit author John Lechner’s page.  For more about Autism and libraries, please visit the Autism & Libraries section here at TLT.

Teens and Autism: What does it mean to be “typical”

Today is a guest blog post from the TLT Teen Reviewer Cuyler Creech in honor of Autism Awareness Month.  Cuyler is the “typical” older brother to Skeet.  Skeet is autistic.  He also has Down’s Syndrome.  The two brothers are very close and today Cuyler shares their story.

Think back to when you were in school. Like elementary school. Can you remember a group of children who sat together at a certain lunch table? Had a classroom all to themselves? Were different somehow, but you didn’t know exactly how?

I remember those children. And until nearly seven years ago, I knew next to nothing about them. They are atypically developing children. Children with various disorders and diseases. Mental and physical abnormalities are common in such cases. And, as I’ve experienced, cruelty and unfairness is easily dealt to children with these challenges. We know there are bullies, and sometimes we do things ourselves that we aren’t even aware that we’re doing it. It’s pure and simple. Ignorance on any subject forms scrutiny. Judgment. That’s why I’ve dedicated myself to do my best to help those come to know about these children with these challenges.

What makes me qualified to do so? Why should you listen to what I have to say? Well, because I live in a situation where I’m educated every single day of my life on the subject. Nearly seven years ago, Skeet Lee Creech was born with a genetic defect called Down’s Syndrome. A gene disorder, also known as Trisomy 21, affects the twenty-first pair of chromosomes. Instead of two copies, there are three, causing mental and physical disabilities.

I am a sibling of a child with special needs.

Now it’s hard to wrap your head around the concept of “special needs.” I know it was for my family and I. Here we had a child with mental and physical disabilities in a family where we’d never experienced anything like that before. Three healthy, typically-developing children with no health concerns, mental or physical, of any kind. And when Skeet was born, we were thrown kind of a curve ball. We didn’t have the experience. The knowledge. We were ignorant on the subject.

For years my parents found it hard to accept that their child was born with a possibly debilitating disability. Depression was seldom. Commonplace if we thought about it too much. But even so, that’s not to say that we didn’t love Skeet unconditionally. It was a loving, irrevocable relationship, and still is. He’d stolen our hearts. Lifted our spirits with nothing but a smile. But even then, it was hard to accept emotionally that our beloved Skeet would have to live with these challenges for the rest of his life. Heart problems. Delayed physical and mental growth. Poor immune system. Countless tests and checkups and endless doctor’s visits.

Then we got more news. At age three, Skeet had been diagnosed with Autism. A mental disorder, confusing and hard to understand for even the smartest doctors. It affects levels of sociability. Most children with a form of Autism struggle with the concept of relationships. It’s sometimes difficult to make friends. Even relationships with family members. Some even appear that they prefer to be alone. As babies, some do not cry. Most do not talk until much later in development. Their muscle tone can be loose and floppy, and hypersensitivity is not uncommon. Some must follow certain pattern religiously, making it a must-do routine in their day. And some even excel amazingly in intellectual or artistic skills. Most savants have Autism. Autism is very hard to understand, and not much is known about it. A book that I highly recommend is Thinking in Pictures by Temple Grandin, a scientist, college professor, livestock consultant, inventor, and autism advocate who has high-functioning autism. It’s a wonderful book on how she, a person with Autism, sees the world and life. Nearly my entire family read it and had a new found respect for how people like Temple and Skeet may see the world.

It was very hard for my mom and dad when Skeet was diagnosed. It was like another heaping load on our already full plate. But still we did not give up. My parents, wanting to give him anything and everything he had the opportunity to achieve, consulted with various therapists and special education teachers. Today, Skeet goes to speech, physical, and occupational therapy at least twice a week, where they practice on the skills he already has and builds on new ones. One step at a time.

Eventually, my parents came to terms with the idea of Skeet having Autism. They realized that when the doctor handed them the paperwork, they weren’t receiving a different son. He was the same happy, loving, ecstatic Skeet we’d come to love and cherish dearly. He has his own funny, happy, quirky personality that brings a smile to our faces each and every day of our lives. He loves music, Mickey Mouse Clubhouse, puppies (any animal really), being outside, milkshakes, anything and everything any “normal” kid would love and enjoy, if not more so. And, he has a very heartfelt love and devotion to his family, which is evident through his bone-crushing hugs and too-wet-but-okay kisses. And believe me, we accept every bit of it.

For me, though, throughout the years of doctor’s visits and therapy sessions, I developed a sort of mama-bear syndrome. I wanted to protect him. From everything. The world really. I didn’t trust it. I still don’t. I’d seen how kids treated kids like Skeet in school, and I didn’t want my little brother to ever have to experience anything like that. Also, it was hard for me to not view the therapy sessions as somewhat harsh. At times when they were trying to get him to do something he didn’t like, he’d get frustrated and upset. It was almost like a reflex that I had to control. Not to jump out of my chair and tell them to leave him alone and let him do it on his own in his own time. But, I came to realize that that was detrimental to his development as well.

The bottom line is this: Children like Skeet can do absolutely anything any other kid can do. Anything. It just may take more time to get there. That’s it. So, I had to come to terms that Skeet needed to be pushed. He needed to be tested to his limit. Therapy hurts, but like anything else, it’s how we learn and survive. It’s essential. This is illustrated through Joseph Layden and Michael E. Kersjes’ book A Smile as Big as the Moon: A Special Education Teacher, His Class, and Their Inspiring Journey Through U.S. Space Camp. A true story of children with special needs, Autism and Down’s included, who accomplish something society never thought possible. A wonderful story that inspires me and moved my heart.

So our lives have been taken on a sort of scary roller coaster ride. One with loops and twists and turns. But, we’ve held on to our straps. We’ve endured and so has Skeet. Down’s or no Down’s, Autism or no Autism, he’s still what we all are. A human being. A human being with challenges. If you don’t think that’s the same, I dare you to bring me someone who doesn’t have any challenges. It’s plain and simple: There are none. Not in the entire world. We all have problems, whether it be in math or English, or socially. Maybe we have a hard time making friends. Figuring out that last few problems on our math homework. Writing that English paper due Tuesday. Fact of the matter is, we all have challenges and we overcome them by learning from our mistakes. We grow and we build on what we have until we grow stronger and more resilient. And that’s what we’ve helped Skeet through every day of his life.

He is my world. He may have parents and friends and family who love him to death, but I am Big Brother. I’ll be there for him for as long as I can. Forever. Always helping him grow and being the best he can be and not what’s expected “typically.” He’s influenced me so much. So much so, that I’m currently enrolled in school to become a therapist to help kids like Skeet meet their own full potential. He’s helped me learn from mistakes that I didn’t even know that I was making. He’s my light in our world of ignorance.

All kid’s need someone to lean on. To help them in this scary world. Add a challenge or two, whether it be Down’s Syndrome or Autism, or even a hard time with math and it can be downright terrifying. But no matter what their circumstance, every child needs a big brother to love them and help them make the next step. And we can be that person to help them do so.

Previous TLT posts on Teens and Autism @ Your Library:
Teen Issues: Autism and Libraries
Teens, Autism and Future Horizons
On the Spectrum and At Your Library (guest post)
Autism and Libraries: a q & a with J. D. Kraus

Guest Blog Post: On the Spectrum and @ Your Library.

Today’s blog post is brought to you by Matthew Ross, he is the director of the Bucyrus Public Library in Ohio and the father of 3 children, one of whom is Autistic.  Alex’s mom, Angie, is also an MLS librarian.  Together they write this blog post for us with a unique perspective for librarians to consider when serving our tween and teen patrons on the spectrum.

On the Spectrum and @Your Library
Our son rubs his hands together in a ritualistic flurry. It’s called “stimming” and it is a strategy Alex uses to calm himself down when things get a little too intense for him to handle. Right now things are intense. Apparently, the lady in front of us at the circ desk is concerned because she has fines—she is sure she returned them on time.   Alex’s stimming grows faster. Sometimes that happens when he is really happy, but since we have been waiting for a good five minutes to get our movies checked out and be on our way, I’m pretty sure that happiness is currently not an issue. In fact, I get the feeling we are just moments away from a full-on autistic meltdown.
For a child with an autistic spectrum disorder (ASD), a simple trip to the library can be a difficult adventure. Sure, the library has lots of great stuff, but to access it, you have to pay a pretty big price in terms of anxiety. What if they relocated the movies? What if someone else is sitting in your chair? What if the books are not in the right order? When ASD is involved, things are never simple.
Alex was diagnosed with Pervasive Developmental Disorder at age two. Taking him to the library was a challenge even when he was in a stroller. Let’s just say Alex was never too good at displaying proper reverence in Mr. Carnegie’s Temple of Quiet Reflection. As he got too old to be easily corralled, we were forced to stop taking him altogether outside of rare, quick trips in and out.
It still seems strange that we cannot go to the neighborhood library as a family and enjoy browsing the shelves before enjoying some of the great programs they offer. Maybe that’s because we know what we’re missing. Each morning, I commute a few miles up the road from my home to my job as the Director of the Bucyrus Public Library. My wife, Angela, spent six years as a Reference Librarian at the Lima Public Library before we decided that it was best for Alex if she stayed at home to take care of him. We are a family that loves libraries. I just wish my son could enjoy them.
If the statistics are accurate, chances are that you know a kid like Alex too. Since one in every 80 boys and one in every 240 girls are dealing with a disorder on the spectrum, that’s a lot of patrons who may find it difficult or impossible to enjoy the services, materials and programs you work so hard to provide. In fact, it’s more than the total number of people diagnosed with breast cancer and childhood diabetes each year combined. It is my hope that the profession will increasingly realize that this rapidly growing and often misunderstood segment of our community is underserved—and that is unacceptable.
Fortunately, librarians do seem to get it. They want to help. No one wants to see a population excluded from the library, but many staff members do not feel like they have the training or the tools to serve individuals with an autistic spectrum disorder. In New Jersey, Fanwood Memorial Library and the Scotch Plains Library have teamed up to create “Libraries and Autism: We’re Connected,” an awesome outreach for ASD individuals. Be sure to check out their training video to pick up great tips for staff interacting with the ASD community.
As I mentioned though, my wife and I are not just librarians. We’re patrons and parents and autism looms large in our lives. So I would like to leave you with a few tips from that perspective. Hopefully, they can make your library a welcoming place for families like ours:
1.     Be Sensitive: Teen Librarians are used to some pretty bizarre patron behavior, but a child dealing with a particularly difficult ASD moment can raise that to a whole new level. These kids and their caregivers are used to seeing shocked stares and obvious disapproval everywhere they go. Don’t let the library become associated with that scene.  If a behavior cannot be ignored, a simple, sincere offer to help would be appreciated.
Image from http://www.displaysforschools.com/autism.html
2.     Offer Targeted Programming: For many kids with ASD, a typical library program might be intolerable. Literally. Too much stimulation—loud noises, too many moving bodies, crazy lights—can be painful and overwhelming. Consider spending a little of your programming time and effort on offerings tailored to the needs of kids dealing with autism. It could be as simple as doing a movie night with the lights on, the sound a little lower, and the expectation that there will be interruptions.  It is really hard to find appropriate activities for kids on the spectrum. If you make the effort, we will notice.

3.     Offer Targeted Materials: Individuals on the spectrum, as well as their caregivers, have unique information needs. Things that typical teens take for granted—such as handling simple social situations—can produce a lot of anxiety for patrons dealing with ASD. Parents are likely to find all kinds of materials on raising a young child with autism, but information on raising autistic teens can be a lot harder to come by. Get to know the specialty publishers and find out what’s out there that should be on your shelves. In an age of gaming, programming, and computers, we sometimes forget that a simple book on a shelf can be a real lifeline for our patrons. As a parent, I can tell you that a copy of Meeting Autism’s Challenges for Dummies does not come free with your child’s diagnosis.
Matt mentions in his post targeted programming with a special emphasis on adapted movie screenings; some big chain movie theaters are doing programs of this nature with great success.  There was recently an Autism friendly screening of Breaking Dawn for teens and adults on the spectrum.

Matt also suggests doing targeted materials; Toys R Us gives us a good example of a helpful list with its autism friendly toys list.  Without a doubt libraries could make the same type of lists highlighting books in their collections for people on the spectrum.  You can read my previous blog post on Teens/Tweens with Autism and Libraries which has a link to the Toys R Us list.


It is an honor in my life to be able to call Matt and Angie not only co-workers and fellow professionals, but friends.  I have gotten to spend time with them and Alex and not only appreciate him as a person but see the challenges that autism brings to a family.  They have recently started a special church ministry with their church to allow families with children on the spectrum the opportunity to go to church.  I appreciate them taking the time to write this blog post for us and help us understand from both a parent and librarian point of view some insight into what libraries can be doing to help kids and teens of all ages on the spectrum.