Teen Librarian Toolbox
Inside Teen Librarian Toolbox

Teen Issues: Autism and Libraries

It is hard these days not to hear about and think about Autism.  Statistics indicate that 1 out of every 110 children are now diagnosed as being on the autism spectrum (ASD).  Statistics also indicate that if you look at only boys, it is 1 out of every 60 boys.  Over the years the rate has slowly been getting higher, which has tremendous immediate and long term implications for all of society, including libraries. (National Autism Association)

I am not a doctor.  I don’t even play one on TV.  But I am the aunt to 3 boys on the spectrum, including 1 that is a teenager.  I am also friends to many families that have autistic children, some of whom are on the higher end of the spectrum, lower functioning.

At times lately I have heard and read about autism and libraries, and I think it is a necessary discussion and frankly we, as a profession, have probably been slower to take part in the discussion then we should have been.  But the truth is, it is a hard discussion to have.

Autism in Teen Fiction

When someone was asking recently about teen fiction titles that deal with autism, a good list was put together.  And yet, I was stirred with a strong sense of conviction to point out what I thought was a fundamental flaw with the way current teen fiction portrays autism.  You see, most of the depictions portray characters with high functioning autism or a type of autism called Asperger’s (not necessarily the same thing).  These depictions do not represent the whole of the spectrum.  They fail to look at life with kids on the high end of the spectrum who are lower functioning.  Those kids that will possibly never leave their homes to live on their own.  These are not the Sheldons from Big Bang Theory (who is often discussed as possibly being on the spectrum in online articles), but more like one of our first popular culture introductions to autism, Rain Man.

I always find teen fiction with autistic characters interesting because they never seem to match my personal experience with autism; the poop smearing, running out of the house naked, will never talk and barely function in society kind (this is not my only experience with autism, it is simply the end of the spectrum that I feel is often ignored in pop culture).  Of the books that I have read, the characters are always milder on the spectrum.  I found The Curious Incident of the Dog in the Nighttime and Al Capone Does My Shirts to be the most informative.  I love how in The Curious Incident the main character talks about what he sees in a field compared to what other people see, and I love how he discusses his sensory issues and coping strategies.  There is tremendous to value to any and all depictions of autism in teen literature; teens need to read and understand the wide variety of personalities and challenges living on the spectrum.  It is important for us all to dive into the world of others and develop compassion and understanding and that is true of autism as well.
Teen Fiction Reading Lists: Autism
Here author Nora Raleigh Baskin discusses her title Anything But Typical about a high functioning, nonverbal 12 year old boy.
Here is a presentation on autism in various pop culture mediums including television and literature.
From a Sibling Point of View
I did appreciate getting the siblings point of view in Al Capone.  But what about the teenager living in a home with a family member that is higher on the spectrum, lower functioning?  Where are those books depicting what it is life for a teen to grow up in a home with a sibling that they can’t come home from school and discuss their day?  Where they are woken up at 4 am by a sibling who can’t get back to sleep and is starting to wander outside the home and they try to gently lead them by the hand back into the house and calm them down?  What is life like for a teen who can’t invite their friends over after school out of fear that their sibling will strip naked, start flapping their arms out of stress, or act out aggressively?
When children grow up in homes with special needs siblings, their life experiences can be dramatically different.  A lot of time and financial resources are spent taking care of ASD kids, whether that be for unique medical needs, therapies, or simply trying to calm them down.  There is often a need for routine and predictability in ASD kids, which would put a lot of additional stress on siblings.  Family outings and social activities can become very limited.
Many people don’t understand what life with a low functioning autistic child is like for one simple reason: these families can become prisoners to their child’s autism and don’t spend a lot of time navigating grocery stores and malls because their child can’t take the difference in routine and stimulation.  Autism Speaks created a 13 minute video that tries to better explain what life with an autistic child is like called Autism Every Day.  This is a depiction of younger children, but they grow up to be teens and although there can be improvement through therapies and other interventions, there are still teens who appear higher on the spectrum.  Plus, for many teens, this is their experience of autism with siblings.
One of the things I would like to see in teen literature is more discussion and depictions of what life is like for teens living in a world impacted by more severe types of autism.  These teens need to see their experiences and feelings validated in the stories that they read.  They need to know that they are not alone.  And they need to know that what they think and feel as their lives are touched by autism is normal.
What Can Libraries Do?
Even as someone whose life has been touched first hand by autism, I recognize that I am not an expert at all and find it difficult to come up with practical ideas for libraries.  There are so many who are better trained and equipped to provide libraries with the information they need to work ASD kids and teens.  I really recommend reaching out and tapping into their expertise.
I think libraries should reach out to specialists in their communities (contact your local schools) and ask them to come in and do training with staff.  Help staff understand what autism is and to help those families that come in with children on the spectrum.  Help staff to understand that not all instances of problem behavior in the library necessarily means that bad parenting is involved; sometimes when that child is throwing themselves on the floor and throwing a fit they are experiencing an actual physical pain as they take in too much stimulation.  An essential part of serving our communities is understanding them and their needs.  People from your local community can also help you understand the make up of your local autistic community: what percentage is there, what ages, what services are offered, etc.
Check with your community to see if there are any autism support groups.  Allow them to meet in your library’s meeting rooms and offering programming for teen siblings in another on site location while these meetings take place.  Siblings need an opportunity to have support, too.  And sometimes, they just want to meet with a group of peers and have fun like all teens do.  You can give them those opportunities while supporting their families.  These families are also one of the best resources to tap into for information and training as they are living it every day.
ALA has put together some training called Libraries and Autism: We’re Connected.  There are a lot of resources here so please check it out.  I think this resource talks more specifically to what libraries can do for teens on the spectrum and does it well, so I won’t repeat it here.  Please go check it out.
And as always, have a variety of resources available to your patrons.  Put together a list of resources in-house, nonfiction and fiction titles for family members of all ages, and some contact information for local agencies.  Toys R Us in an example of someone who does this well; they have put together a sheet online and in their stores highlighting specific toys that work well with children on the spectrum.  Libraries can create the same type of informational resources for families highlighting library resources and services that meet the needs of these families. 
April is Autism Awareness Month.  This is a good time to do displays, training and seminars to the public.  It is also a great time to do special programming for kids on the spectrum and their siblings.  Autism has tremendous impact on families and the community as a whole, so spend some time making yourself and your staff aware of this impact and learning how to meet the unique challenges presented.  You want to make sure to address everything from customer service at the front line services desks to programming and community outreach.  Autism is not going away (although I do hope they find a cure, and soon), we need to be proactive in serving our teens affected by autism.
Other Resources:
Blog post: What pop culture has taught me about autism
The Altantic: When autism stars
School Library Journal: The Voices of Autism
School Library Journal: The Equal Opportunity Disorder
School Library Journal: Remarkable Reads: Autism
Service on the Spectrum: Mediating the Information Needs of Teenagers with Autism Spectrum Disorders in the Public Library
The Curious Inciden of the Dog in the Nighttime discussion group questions
Scholastic: Al Capone Does My Shirt discussion guide