About this Kit
Autism Speaks would like to extend special thanks to the Advisory Committee for
the time and effort that they put into reviewing the Asperger Syndrome and
High Functioning Autism Tool Kit.
Asperger Syndrome and High Functioning Autism Tool Kit
Advisory Committee
Ann Brendel
Geraldine Dawson, Ph.D.
Chief Science Officer, Autism Speaks
Research Professor, University of North Carolina, Chapel Hill
Peter F. Gerhardt, Ed.D.
President, Organization for Autism Research (OAR)
Kerry Magro
Valerie Paradiz, PhD
Patricia R Schissel, LMSW
President, Asperger Syndrome and High Functioning Autism Association (AHA), Inc.
Stephen M. Shore, Ed.D
Assistant Professor of Education
Adelphi University
Family Services Committee Members
Liz Bell
Parent
Sallie Bernard
Parent, Executive Director, SafeMinds
Michele Pierce Burns
Parent
Farah Chapes
Chief Administrative Officer, The Marcus Autism Center
Peter F. Gerhardt, Ed.D
President, Organization for Autism Research (OAR)
T. Michael Glenn*
Parent
Susan Hyman, M.D.
Strong Center for Developmental Disabilities
Brian Kelly * **
Parent
Artie Kempner*
Parent
Gary S. Mayerson*
Founding Attorney, Mayerson & Associates
Kevin Murray*
Parent
Linda Meyer, Ed.D
Executive Director, Autism New Jersey
Denise D. Resnik
Parent, Co-Founder Southwest Autism Research and Resource Center (SARRC)
Stuart Savitz
Parent
Michelle Smigel
Parent
Kim Wolf
Parent
*Autism Speaks board member
**Chairperson – Family Services Committee
Parent – indicates a parent of a child with autism
Autism and Safety – How can I keep my
child Safe?
Autism presents a unique set of safety concerns for parents. The advocacy and
awareness groups, Unlocking Autism (UA) and the National Autism Association
(NAA), have teamed up to provide the following safety information for parents.
Not all suggestions listed below are right for every family in every neighborhood. You
should carefully consider the best safety options for your individual child.
Are You Prepared for an Autism
Emergency?
A leading cause of concern for parents with a child with autism is children who
run or wander away. In a recent online survey conducted by NAA, an incredible
92% of the parents who responded reported their children were at risk of
wandering. This is a problem that must be addressed in every city and town across
America. Please review the following information and contact your local first responders
to get a plan in place for your child and others who may be at risk in your community.
Wandering can occur anywhere at anytime. The first time is often the worst time.
Another concern is preparation in the event that you become incapacitated or injured
while caring for a person with autism at home or in the community. If you are concerned
that your child may wander, now is the time to get to know your local law enforcement,
fire and ambulance agencies. Ask your local 911 call center to “red flag” this information
in their 911 computer data base. Should you need help in the future, dispatchers can
alert patrol officers about your concerns before they arrive. By providing law
enforcement with key information before an incident occurs, you can expect better
responses.
Make sure any alterations you make to your home not delay or prevent fire,
police, ambulance or rescue personnel from getting to her or him immediately in
an emergency.
An ounce of prevention… You know the expression, “an ounce of
prevention is worth a pound of cure.” Following are some tools and
ideas to help you plan for and prevent emergencies.
“We had no idea Louis was out of the house, when we received a call
from a neighbor. Thankfully, they were familiar with Lou and
knew how to reach us.”
Survey and secure your home
Are there changes you can make to help ensure your child’s safety? If wandering
is an issue for your family, consider contacting a professional locksmith, security
company or home improvement professional to prepare your home. You may find
it is necessary to prevent your child from slipping away unnoticed by:
• Installing secure dead bolt locks that require keys on both sides.
• Installing a home security alarm system.
• Installing inexpensive battery-operated alarms on doors and windows to alert you
when they are opened. These are available at stores like WalMart and Radio
Shack.
• Placing hook and eye locks on all doors, above your child’s reach.
• Fencing your yard.
Create an informational handout about
your child
Having a description of and information about your child could be an incredibly
valuable tool in ensuring his or her safety. It should be copied and carried with
you at all times, at home, in your car, purse or wallet. Include a photo of your
child and any important information. Be sure to include your name, address and phone
number. Circulate this handout to family members, trusted neighbors, friends and coworkers.
The handout will also come in handy if you are in an area other than your
neighborhood and need the help of or are approached by the police. This is one item it is
important to have before you actually need it.
Alert your Neighbors
The behaviors and characteristics of a child with autism have the potential to
attract attention from the public. Law enforcement professionals suggest that you
reach out and get to know your neighbors.
Decide what information to present to neighbors:
• Does your child have a fear of cars and animals or is he drawn to them?
• Is your child a wanderer or runner?
• Does he respond to his name or would a stranger think he is deaf?
Plan a brief visit to your neighbors:
• Introduce your child or provide a photograph.
• If a neighbor spots your child outside of your yard, what is the best way for them
to get your child back to you?
• Are there sensory issues your neighbors should know about?
Give your neighbor a simple handout with your name, address, and phone number. Ask
them to call you immediately if they see your child outside the home. This approach may
be a good way to avoid problems down the road and will let your neighbors:
• Know the reason for unusual behaviors
• Know that you are approachable
• Have the opportunity to call you before they call 911
Some Things to Consider…
Teach your child to swim
Too often, children with autism are often attracted to water sources such as pools,
ponds, and lakes. Drowning is a leading cause of death for a child or adult who has
Autism. Be sure your child knows how to swim unassisted. Swimming lessons for
children with special needs are available at many YMCA locations. The final lesson
should be with clothes on.
A Medical ID Bracelet for your child
You may want to purchase an ID Bracelet for your child, especially if your child is
non-verbal. Include your name and telephone number. State that your child has
autism and is non-verbal if applicable. If your child will not wear a bracelet or necklace,
consider a temporary tattoo with your contact information.
A personal tracking device
Some use a small unit that is put in a child’s pocket or backpack and work with your
computer or mobile phone so that you can monitor your child’s location. Others
involve a handheld unit for the parent which tracks the location of the child’s wristband.
Some units work with local law enforcement and rescue personnel. The tracking
distance for the devices varies considerably and ranges from 300 feet for parent
monitored units to one mile on the ground and 5-7 miles from the air for those monitored
by rescue personnel. Some systems include waterproof tracking devices. Prices range
from around $200 for some parent monitoring units to around $7,000 for units tied into
local rescue personnel. Many local law enforcement agencies have purchased units for
tracking residents with autism, Alzheimer’s and Down’s Syndrome.
For more information on safety you can visit:
Autism Safety Toolkit
http://www.nationalautismassociation.org/safetytoolkit.php or
http://www.unlockingautism.org
and
The Autism Safety Project
http://www.autismsafetyproject.org
Knowing your neighbors and making them comfortable with your
child’s differences can lead to better social interactions for your child.
A Week by
Contacts
A section for service providers, caregivers and others
Week Plan
Diagnosis
A section for medical documents and any
prescriptions
Therapy
A section for Speech, Occupational Therapy, SI,
and so on (Multiple or sub sections may be
necessary)
Individual Family Service Plan
(IFSP)
for the
Next 100 Days
.
A section for therapy times, program start and
end dates, deadlines
Schedules
Getting Organized
We’ve included a sample contact list, phone
log and weekly planner in this kit so you can copy and
use them as needed. You may also want to summarize
your child’s progress in therapy and at school with cover
sheets in each section; sample summary sheets are also
in the Resources Section.
Using your Weekly Planner The
time frame and action items will vary depending on
your child’s symptoms, your child’s age, where you
live and what you have already accomplished. Even if
you are very on top of this, it may take a while to be
able to access additional evaluations and the services
that your child needs
Start now.
The Binders
Many parents find that binders are a
great tool for keeping the mountains of paperwork
down to a more manageable, mole hill size and
for sharing information. You may want to organize
by subject or by year. In either case, here are
some of the subjects that you are likely to want to
have at your fingertips:
(IEP) A section for your child’s IEP and
related documents (For children older than
three years)
Individualized Education Plan
A section for your child’s IFSP and related
documents (For children under three years of
age)
The first thing you will need to do is get
yourself organized. You may already find you’ve
accumulated a lot of paperwork about your child
and about autism in general. Organizing the
information and records that you collect for your
child is an important part of managing his or her
care and progress. If you set up a simple system,
things will be much easier over time. You may
need to stop by an office supply store to pick up a
binder, dividers, some spiral notebooks, loose
leaf paper or legal pads and pens.
Week 1
Week 2
Getting Services (Follow Up) Follow up on
services. Continue to check status on waiting lists
and available programs.
Research Treatment Options Start to
read material, join online groups and ask questions
that will help you understand the treatment options
that are available and what might be right for your
child and your family.
Complete Evaluations If your child has
not had a complete work up, schedule the
remainder of necessary evaluations (see Getting
Services below).
Getting Services (Continue to Follow Up)
Follow up on services. Continue to check status on
waiting lists and available programs. Keep using
your phone log to record the dates you contacted
service providers and track when you may need
make another call.
Set Aside Sibling Time The siblings of
children with autism are affected by the disorder as
well. Consider spending time talking together about
their feelings. Start a “Joy Museum” together of
happy memories. Talking about these times can help
them remember that their lives involve a lot more
than autism.
Getting Services If your child is three or
older, you’ll start with your local school district. Call
to begin the process of getting services. You may
want to put this in writing. EI (Early Intervention) or
your school district may want to conduct
evaluations of your child (at their expense). This
can be a long and time consuming process, but
may be useful in further determining the services
that are needed.
Start a Video Record Try a variety of
settings and show a range of behavior. Note both
good and not-so-good behavior so that, in the
future, you will be able to recognize where your
child was at that point in time. Make a new
recording every three months at home, in therapy
sessions, wherever. These video “snapshots” can
be used to track your child’s progress and help
show what effect a particular therapy or
intervention may have had. Label the tapes or
discs with your child’s name and the dates they
were recorded.
Getting Support Find a support group or a
parent mentor. If your child is in school, you may
also want to find out if your district has a Special
Education Parent Teacher Association (SEPTA),
which may offer informational meetings and parent
outreach.
Week 3
Keep a Phone Log Try to set aside some
time each day to make the phone calls necessary
to set up the evaluations and to start the process
of getting services. There may be a waiting list for
services and evaluations, so make the calls as
soon as possible and follow up as needed—and
don’t hesitate to put your name on multiple lists so
you can get the earliest appointment possible.
Some of the professionals who provide services
through Early Intervention or Special Education
may take a specified number of days to complete
evaluations or begin services.
Week 5
Continue Building Your Team
See Week 4.
Review Your Insurance Investigate your
insurance coverage to see what if any therapies
are covered and make sure that you are getting
the most from your provider. Your health insurance
may cover therapies or services not covered by
your child’s IFSP or IEP. You may need to create
a separate binder to keep track of insurance
claims. Document everything.
Get to know Your Child’s Legal
Rights Familiarize yourself with your child’s
rights. There is a wealth of information available.
You may find out your child is entitled to services
you weren’t aware of or hadn’t considered.
Do Something for You You’ve made it
through a month, and it may have been one of the
most challenging months of your life. Remember
to take care of yourself. Remember who you were
before the diagnosis. Spend some time on an
activity that you enjoy. You will find it helps you
face the challenges ahead. There are probably
friends and family in your life who would love to
help, but may not know what you need. Don’t be
afraid to ask for help.
Week 4
Build Your Team By this time, your child’s
team of therapists, educators and caregivers is
probably taking shape. Continue to look for service
providers and observe as many therapy sessions as
possible to identify new recruits for your child’s team.
Talk to other parents who may know of therapists
with time available for your child. You don’t have to
wait until every member of the team is in place
before beginning therapy.
Create a safety plan You may already have
had to adapt your home because of your child’s
behaviors or needs. You’ve probably already read
the section of this kit called Create a Safety Plan. If
not, carve out some time to survey your home for
possible problems and begin contacting local safety
personnel to plan ahead to ensure your child’s
safety.
Plan some Time Away Plan some time
away from your child. You will do a better job helping
your family if you take care of yourself. Even if it’s
just going for a walk alone, you are going to need a
break so that you can come back with a clear head.
Week 6
Week 7
Continue to Research Treatment
Options Continue to research treatment
options. If possible, go to a workshop or look for
additional information online.
Connect with Other Parents Go to a
support group or spend some time with a parent
who can help you along your journey. You’ll learn
a lot and being around people who know what you
are going through will help you stay strong.
Find Childcare Get a baby-sitter. Look into
qualified baby-sitting services and respite care.
Don’t wait until you’re desperate—find someone
you’re comfortable with and plan a night out. If you
already have a great baby-sitter, invite her or him
to spend some time with you and your child so
they can adjust to the new techniques your family
is using at home.
Schedule a Team Meeting If you’ve built
a team of therapists, you may want to call a
meeting to establish procedures and goals and
open lines of communication. You’ll also want to
continue observing therapy sessions and using
what you learn at home. If it’s difficult to schedule
a time for the service providers to meet in person,
you may want to schedule a conference call
instead.
Continue Learning about
Treatments & Services Continue research
on treatments and services. Consult the Autism
Speaks web site for contacts in your area.
Spend some time organizing your
paperwork Organize any paperwork that may
have piled up. Try to eliminate any materials you
won’t need.
Week 8
Become Competent in the
Intervention Methods you have
Chosen for Your Child Take advantage of
parent training. Therapists often provide parent
training that will help bring the methods used at
therapy into your home and help your child’s
progress.
Create a Schedule Having a written weekly
schedule for your child’s therapy schedule will help
you see if you’ve scheduled your time well. It will
also help you plan for the other members of your
household.
Build your Team Continue to follow up on
services and research any new possible providers.
Check your Progress Look back through this
action item list. Is there anything you started that
needs follow up?
Investigate Recreational Activities
for your Child Add a recreational activity, such
as gymnastics or swimming to broaden your child’s
development.
Pla n more Sibling Time Your typicallydeveloping
children will no doubt be richer for
having a sibling with Autism. But maintaining as
much normalcy as possible will help them reach
their potential too.
Make Contact with Friends and
Family Stay connected. Make contact with your
friends and family and participate in community
events. Keeping up your social life will help you
safeguard against feelings of isolation.
Spend Time Alone with Your Spouse
Plan a relaxing and fun activity with your partner.
After all, you’ve just made it through month two.
Week 10
Schedule a Team Meeting It’s team
meeting time again. Schedule a meeting to
discuss progress and strategies. Stay involved
with your team by continuing to attend as many
sessions as possible.
Rally the Troops Encourage your team. Let
them know you appreciate everything they are
doing for your child.
Week 9
Rou nd out Your Team
Continue to evaluate service providers
and therapists.
Use the Internet Get e-savvy. Spend time
researching online resources that will keep you upto-
date. Add useful Web sites to your favorites,
register for e-newsletters and join list-servs where
parents and professionals share information.
Brush up on the Law
Continue to learn about your child’s legal rights.
Continue to Connect with Other
Parents Stay active with a support group or, if
possible, socialize with other parents of children
with Autism. Being around other adults who
understand what your family is going through will
help you stay strong.
Check in on Your Child’s Sessions
Continue to observe therapy. Your child should be
getting used to their therapy routine at this point.
Play with Your Child Play with your
child. Continue to use the strategies you’ve
learned from parent training sessions and other
resources.
Plan a Family Outing Plan a family
outing. Schedule an activity designed to include
your child with autism and utilize strategies you’ve
picked up from therapy. Ask your child’s therapist
to help you with specific strategies to make the
outing a success.
Week 11
Check Your Child’s Progress Look for
progress. Hopefully, your child has been through a
consistent month of therapy at this point. Review
your binder and videos to see if you notice
improvements. Continue to attend sessions too.
Take notes on what you see. Keep a copy in your
binder and bring them to your next team meeting.
Week 12
Reconnect with Your Spouse Take
some one-on-one time to enjoy each other’s
company. If communication has been difficult,
consider scheduling time with a counselor to keep
your relationship healthy.
Continue Connecting with Other
Parents Keep going to support groups.
Parents are amazing resources and will help
provide emotional and practical support. Look into
additional groups in your area if you don’t feel
you’ve found the right one for you.
Sign up for More Training Using the
methods you are learning from your child’s
therapists will help create a productive environment
at home, so your child will have the
best chance of obtaining their goals.
Dig deeper into Treatment Options
Set aside time to do some research and reading
on additional treatments and therapies. Make
notes and copy useful information to include in
your binder.
Week 13
Hold a Team Meeting Check on
progress again. You should continue to see
progress after at least six weeks of consistent
therapy. If there has been little or no progress, call
another team meeting to brainstorm and make
adjustments to your child’s routine.
Continue Learning Keep learning about
autism. Books, seminars, movies, Web sites—all
sorts of sources can help you deepen your
understanding of autism and your child. See the
Suggested Reading List in this kit for ideas.
Do Something for You Enjoy some “me”
time. Do something nice for yourself—you’ve
made it through 100 days!
Useful Books and Websites
Websites
Answer – Aspergers Network Support
Autism Asperger Publishing Company
ASPEN – Asperger Syndrome Education Network
Asperger Association of New England
Asperger Friends Support
http://www.aspergerfriends.com/
Aspie Land
http://www.aspieland.com/directory/
Asperger Support Group
Asperger Syndrome and High Functioning Autism Association
Asperger Syndrome Parents Support Group
http://myweb.lmu.edu/jdevine/as
Coulter Videos
Daily Strength
http://www.dailystrength.org/c/Asperger-Syndrome/support-group
A Directory for Asperger Syndrome
http://www.kandi.org/aspergers/Support_Groups_and_Organizations/index2.html
Disability Scoop
http://www.disabilityscoop.com/
Facebook Page for Asperger Syndrome Support Group
http://www.facebook.com/pages/Aspergers-Syndrome-Support-Group/27019793856
Families of Adults Affected by Asperger Syndrome
GRASP – The Global and Regional Asperger Syndrome Partnership
I Can Do It – A Special Place for Special Kids
http://www.camelotforchildren.org/default.aspx?pageid=316
Interactive Autism Network
http://www.ianproject.org
MDJunction – People helping People
http://www.mdjunction.com/asperger-syndrome
The Online Asperger Syndrome Information and Support Center
http://www.aspergersyndrome.org
Organization for Autism Research
http://www.researchautism.org
Sacramento Asperger Syndrome Information and Support
Understanding Asperger Syndrome: A Professors Guide
http://www.researchautism.org/resources/AspergerDVDSeries.asp
The Website of James Williams
Books
Parenting and Family Books
Asperger Syndrome and Difficult Moments: Practical Solutions for
Tantrums, Rage, and Meltdowns
By Brenda Smith Myles, Jack Southwick
Asperger’s Syndrome inYyoung Children: A Developmental Guide for
Parents and Professionals
By Laurie Leventhal-Belfer, Cassandra Coe
Asperger Syndrome and Adolescence: Helping Preteens and Teens Get
Ready for the Real World
By Teresa Bolick
Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family
By Jude Welton, Jane Telford
Finding a Different Kind of Normal: Misadventures with Asperger
Syndrome
By Jeanette Purkis
Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence
By Luke Jackson, Tony Attwood
Help for the Child with Asperger’s Syndrome: A Parent’s Guide to
Negotiating
By Gretchen Mertz
I Am Utterly Unique: Celebrating the Strengths of Children with Asperger
Syndrome and High-Functioning Autism
By Elaine Marie Larson
A Parent’s Guide to Asperger Syndrome and High-Functioning Autism: How
to Meet the Challenges and Help Your Child Thrive
By Sally Ozonoff, Geraldine Dawson, James McPartland
The Everything Parent’s Guide to Children with Asperger’s Syndrome
By William Stillman
Talking Teenagers: Information and Inspiration for Parents of Teenagers
with Autism or Asperger’s Syndrome
By Ann Boushéy
Education Books
Asperger’s Syndrome: Intervening in Schools, Clinics, and Communities
By Linda J. Baker, Lawrence A. Welkowitz
Autism: Asserting Your Child’s Right to A Special Education
By David A Sherman
Inclusive Programming for High School Students with Autism or Asperger’s
Syndrome
By Sheila Wagner
Navigating the Social World: A Curriculum for Individuals with Asperger’s
Syndrome, High Functioning Autism and Related Disorders
By Jeanette L. McAfee
Realizing the College Dream with Autism or Asperger Syndrome: A Parent’s
Guide
By Ann Palmer
The Hidden Curriculum: Practical Solutions for Understanding Unstated
Rules in Social Situations
By Brenda Smith Myles, Melissa L. Trautman and Ronda L. Schelvan
You’re Going to Love This Kid!: Teaching Students With Autism in the
Inclusive Classroom
By Paula Kluth
General Asperger Syndrome Books
Asperger’s Disorder
By Jeffrey L. Rausch, Maria E. Johnson, Manuel F. Casanova
Asperger’s from the Inside Out
By Michael John Carley
Beyond the Wall
By Stephen Shore
Bye Bye Balloon: An Introductory Guide to Asperger Syndrome
By Carlene Inge
Coming Out Asperger: Diagnosis, Disclosure and Self-Confidence
By Dinah Murray
A Guide to Asperger Syndrome
By Christopher Gillberg
Elijah’s Cup
By Valerie Paradiz
The Asperger’s Answer Book: The Top 300 Questions Parents Ask
By Susan Ashley
The Complete Guide to Asperger’s Syndrome
By Tony Attwood
The OASIS Guide to Asperger Syndrome: Completely Revised and Updated:
Advice, Support, Insight, and Inspiration
By Patricia Romanowski, Barbara L. Kirby, Simon Baron-Cohen and Tony Attwood
Useful information can be found in the
Autism Speaks™
Family Services Resource Guide. We
have provided information on resources
and services in your area that may be
helpful to you and your family.
The Family Services Resource Guide can be found on the
Autism Speaks website,
http://www.AutismSpeaks.org/community/fsdb/index.php.
Autism Speaks maintains the Family Services Resource Guide as a service to families
as a reference tool. Every effort is made to ensure listings are up-to-date. Autism
Speaks does not endorse or claim to have personal knowledge of the abilities of those
listed. The resources listed in these pages are not intended as a recommendation,
referral, or endorsement of any resource or as a tool for verifying the credentials,
qualifications, or abilities of any organization, product or professional. Users are urged to
use independent judgment and request references when considering any resource
associated with diagnosis or treatment of autism, or the provision of services related to
autism.
