Reference & Instruction Guide: Autism

I chose to have my reference guide focused on resources that would be available at a public library. I
chose to use Erie County Library System as my focus since I feel when trying to provide parents and
caregivers resources it needs to be tailored to the area. I chose to create a guide for parents and
caregivers to use for finding information and support. I included a wide range of material that covers
from diagnosis to living on the Autism Spectrum as an adult. This is particularly important for the Erie
area because often families are encouraged to seek assistance of the Barber National Institute like my
family was and move into the area early in the child’s life. While learning about autism is important it is
also important to include resources regarding treatment and support systems. I also chose some books
geared toward children and teens if the parents would like some material for their children.

Books
Children

Different Like Me by Jennifer Elder

The book is for children on the Autism spectrum, but it can also be used as a teaching tool for children
not on the spectrum. The particular book can be used once the individual child begins to realize they
don’t always think or act like everyone else. It can give the child successful people to look up to who
also had problems with social skills or other tasks most people take for granted. The book also lets them
know they are not alone especially if there are limited ways for them to meet other children like
themselves in the community. This can also be useful in teaching children that being different isn’t
something negative and it doesn’t mean someone can’t be successful.

We’re Amazig 1, 2, 3 A Story About Friendship and Autism by Leslie Kimmelman and illustrated by Mary
Beth Nelson

I wish they had this book when I was growing up since as a child it is so hard to explain why a sibling is
different and who better to help explain than the characters of Sesame Street. In this story they
introduce Elmo’s friend, Julia, who is a little different because she has autism. One of the other
characters isn’t sure what to make of Julia but then realizes that even though Julia has her differences
they have a lot in common. This is a good story for both children with and without an Autism Spectrum
Disorder with the messages not to jump to conclusion and to give everyone a chance. It also reinforces
that being different isn’t negative.

Teens

Why is Autism on the Rise by Clay Farris Naff, book editor

Why is Autism on the Rise is a collection of essays as part of the At Issue Health series from Gale
Cengage Learning. The topics of the articles vary dramatically as does the background of the authors. A
couple articles are about controversial theories and can definitely promote discussions. This particular
book is a good introduction to some of the more sensitive issues and the politics involved with the
Autism spectrum. I would recommend it to a teen who was already familiar with ASD and also to adults.
While it is housed with the Young Adult Non-fiction the book would also be useful to the adult audience
since it gives an overview of the more controversial and untested theories. This is definitely a book to
use when beginning more in-depth research as it gives key names and terms. There is also a list of
organizations to contact for more information and bibliography to help continue the research.

Same but Different: Teen Life on the Autism Express by Holly Robinson Peete, Ryan Elizabeth Peete and
RJ Peete

Using fictional alter egos, twins RJ and Ryan tell what it is like to be a teen with autism and the sibling of
a teen with autism. While some teens could have trouble connecting to story since it’s a twin brother
and sister and not the exact situation they are it, many would find it helpful. This is another book to
help teens realize they are not alone in their struggles and to help them work out how they would react
in a situation. It could also be used to help teens transition into the new period of their life which is
normally already difficult and filled with complicated social interactions. Parents and educators could
also use this as a resource to get an idea of what young adults with autism and their siblings experience.

General Audience/Adults

Autism Spectrum Disorders What Every Parent Needs to Know Edit by Alan I. Rosenblatt, MD, FAAP; Paul
S. Carbone, MD, FAAP with Winnie Yu

This book is published by the American Academy of Pediatrics and covers basic information on ASD,
possible treatments, coping mechanisms, family dynamic, etc. It is not inundated with medical
terminology and one won’t be looking up terms every paragraph. The book gives all treatments that
have been tried and doesn’t shy away from addressing the controversial theories such as the MMR
(Measles Mumps Rubella) vaccine. It also discusses the transition to becoming an adult on the spectrum
and how to assist in preparing your child. The book covers the topic and doesn’t overload the
information so there are areas that should be further discussed with a medical professional or further
research would be needed but the basic questions would be answered. This particular edition was
published in 2013 so the information is current but I would encourage comparing some of the
information with current articles and reputable websites.

Autism and Pervasive Developmental Disorders Sourcebook edited by Joyce Brenfleck Shannon

As part of the Health Reference Series, Autism and Pervasive Developmental Disorders Sourcebook
offers a more in depth look at the disorder than the book published by the AAP. This book also covers
from childhood to adulthood of an ASD individual. It is also easy to navigate since the table of contents
is so descriptive one can find the topic with a quick perusal and also an index and glossary of terms.
Research and studies are discussed more fully but in language the layperson would be able to
understand. The book is over 5 years old in a field that can rapidly changes so some information could
be out of date or have some further development that isn’t included due to the publication date.
I Think I Might Be Autistic A Guide to Spotting the Signs & Symptoms and Living with Autism by Louise R
Allen

This is a direct, concise guide to spotting the symptoms of autism, some basic information and the
various treatments and coping mechanisms. The book is written with a focus on adults who have a late
diagnosis or who were misdiagnosed with another disorder as a child, teen or young adults. Chapters 6
through 9 are about managing symptoms and suggestions for changes to routines and exercises that can
be done on one’s own. This would be a great book to share with a young adult on the spectrum who
would like more control over their disorder and looking for more independence.

Autistics’ Guide to Dating A Book by Autisitcs, for Autistics and Those Who Love Them or Who Are In Love
with Them by Emilia Murry Ramey and Jody John Ramey

Written by a married Autistic couple who describe their relationship and the steps they have taken to
make it a success. It is sometimes hard to follow due to the writing style of Emilia and Jody, since they
sometimes switch from first person to third person when talking about themselves and each other.
After they tell their stories near the end of the chapters they give advice for parents/caregivers since
they understand seeing their Autistic child dating and exploring relationships to be difficult. They also
discuss sex which isn’t very common in the books and point out how important it is for individuals on
the spectrum to have sex educations so they don’t become victims of sexual abuse and don’t act out
inappropriately.

Siblings of Children with Autism a Guide for Families by Sandra L. Harris, Ph.D. and Beth A. Glasberg,
Ph.D.

Autism affects the whole family not just the child with the diagnosis, which makes this book particularly
important. Siblings can also play a huge role in the socialization and education of their ASD sibling. The
book emphasizes the importance of recognizing what is normal behavior between siblings and what
behaviors and emotions are brought on due to the autism. The book gives a number of suggestions for
parents to create a good environment and relationships for all their children and that it is okay to ask for
help. I also feel this is something that adult siblings should read once they are older since it can help us
understand more of what our parent were going through.

A Picture’s Worth PECS and Other Visual Communication Strategies in Autism by Andy Bondy, Ph.D. &
Lori Frost, M.S., CCC-SLP

Many example of Autistic individuals tend to be able to speak and communicate but lack social skills, the
most recent example is Max Braverman on Parenthood. With that in mind many people forget that
some individuals with autism never learn to speak so they must be taught different skills to allow them
to properly communicate their wants and needs.

The Autistic Brain: Thinking Across the Spectrum by Temple Grandin and Richard Paneck

Temple Grandin is one of the most well known adults living with an Autism Spectrum Disorder and has
seen so much change in her lifetime as well as being one of the first to help those of us outside of the
Autism Spectrum understand what it is like to have autism. Within the book new discoveries and
advances are discussed and evaluated. Temple Grandin uses her own experiences to show the affects
and advancements. Temple Grandin is a prolific writer and Autism advocate, normally her books and
books that are endorsed by her are reliable and informative.

Databases – Library Card Needed

Gale Virtual Reference Library

The database includes; The Gale Encyclopedia of Children’s Health: Infancy through Adolescence, The
Gale Encyclopedia of Alternative Medicine, The Gale Encyclopedia of Senior Health, and The Gale
Enclycopedia of Surgery and Medical Tests. Between the different encyclopedias there are 64 articles
related to Autism. Two are an overview, while the others are sub-categories of ASD. The articles offer
quick overviews of the disorders and offer some further research in the form of bibliographies and
recommended resources. There are also articles that are not related directly to autism, such as the
article on toilet training. Within the article, autism is mentioned as a cause for difficulty in toilet
training. There are also a number of articles on alternative remedies and therapies but those are
something that should not be undertaken without a discussion with the individual’s medical and therapy
staff.

EBSCO

Within this database one can find a large number of articles pertaining to ASD and the different
treatment. This is recommended for further research into specific topics, so once the basics are
understood, EBSCO can become a valuable resource. Due to the more technical language used in many
of the articles it might be handy to have one of the books that provides a glossary of terms pertaining to
ASD. Another reason prior knowledge is helpful is the frequent use of acronyms such as ABA (Applied
Behavioral Analysis) or AAC (Augmentative and Alternative Communication). Once familiar with basic
concepts and terms this can be a valuable resource to research studies on specific medications or
therapies.

Videos
Why My Autistic Children Don’t Need a “Cure” by Vikie Shanks

In the Ted Talk, Vikie Shanks, a mother of children on the ASD spectrum, discusses the challenges that
raising ASD individuals can entail and impresses to the audience the need to change the terminology
and views of the world. She discusses the need for neuro-diversity and looking for strengths in her
children instead of allowing their disorders to be their only defining factor in who they are. This video is
a good tool to remind parents that there are options and that a diagnosis can be a hurdle but not the
end. Some of the educational terminology is different since she is from the United Kingdom but the
message she is trying to spread is not altered.

Dear Society…Signed Autism by Daniel Share-Strom

Daniel Share-Strom is a young adult on the spectrum and an advocate for individuals on the spectrum.
In his Ted Talk he discusses the difference between awareness and acceptance. Share-Strom speaks
with humor about knowing what he can and can’t do. He uses anecdotes from his own life to shed light
on the issue of understanding and acceptance. While his delivery is humorous he gives a concise look at
the issues the ASD community still needs to overcome and ways to help assist in that goal.

invisible i channel on YouTube

The YouTube channel invisible i is created by Katy, a young adult on the Autism Spectrum. She makes a
variety of videos including a large number talking about her diagnosis and what she goes through as an
adult living with ASD. Katy is not an expert and she also puts the disclaimer on her page that one should
see a mental health professional if you have concerns regarding your mental health. Her videos can
help parents understand what it could be like for their child and it could also be used as a resource for
showing children and teens on the spectrum that they are not alone. There are also links and suggested
videos that lead to other videos and video creators who discuss living on the Autism spectrum or what it
is like living with someone on the spectrum. One thing to remember is that while this can give glimpse
into what life could be like for an individual with ASD that all medical, educational, and lifestyle decisions
should be discussed with professionals and that all individuals with ASD are unique and what works for
one person may not work for another.

Websites
barberinstitute.org

The Barber National Institute was founded by Dr. Gertrude Barber in response to lack of services for
individuals with disabilities in the Erie area. This organization is not just for individuals who have an
Autism Spectrum Disorder, so the information is not just pertaining to autism. This site offers
information about services they provide for both children and adults, including educational
opportunities, employment, and mental/behavioral health service. They also have programs to assist
the families of individual with a developmental disorder.

autism-society.org & nwpa-asa.org

The websites for the Autism Society of America and the chapter for Northwestern Pennsylvania offer a
large number of resources for parents of ASD individuals. The national website provides an overview of
autism, assistance with determining services, fundraising for research and providing support. They also
include ways to get involved with the national movement and there is a large amount of information on
their mission and purpose. They also include information on autism in Spanish, which is a wonderful
resource when the only austism books in the library are in English. The site for the local chapter is more
focused on the community and the events that will be happening to support the local children and
families. It publishes local events and encourages involvement where one can meet other families going
through the same thing.

paautism.org

This is the website for ASERT (Autism Services, Education, Resources, and Training) which is a statewide
initiative from the Bureau of Autism Services. This website is easy to navigate and offers a wide range of
information and services. The site can also be translated into ten languages making it a great resource if
one is more comfortable reading the information in a language other than English. There are a large
number of articles regarding living on one’s own directed at adults with ASD and then also articles for
their parents. Also are links to different support groups both in person and online that can be searched
by county. Also included are e-learning programs designed for educators, TSS but are open for the
public to take as well.

dhs.pa.gov

The state run website is one that can assist family members, caregivers, and individuals on the Autism
spectrum find services and know the rights they have. While the site doesn’t give information on
Autism itself, knowing what steps to take when the time comes is important. Most of the information
on the site is meant for adults on the spectrum with some exceptions. The Department of Human
services has a page strictly for Autism services run by the Bureau of Autism Services. It explains the two
programs Pennsylvania offers to ASD adults which are the Adult Autism Waiver (AAW) and Adult
Community Autism Program (ACAP). There is also information on training for working with ASD
individuals. Included on the Autism services page are resources such as task force reports, census
findings, HIPPA policy and the Right to Know law, along with a link to the paautism.org site. One of the
most helpful tools the site offers is the Information Referral Tool which is a questionnaire to point you to
services in the area that fit with the individual who needs service.