CHAPTER 2 

Living with ASD: You Are Not Alone 

 

This chapter provides parents of children with ASD practical strategies and 
suggestions for how to handle situations that may arise when living with a child or 
children with ASD. The chapter explores such topics as toileting, family outings, 
physician appointments, family issues, finances, and other family issues. . 

Upon receiving a diagnosis of ASD, parents experience a host of strong emotions. 
Few forget the day when they realized that their child had a developmental disability 
and that their journey of parenting might be quite different from what they had 
imagined. In an article entitled You Are Not Alone, Patricia McGill Smith (see box 
below) tells of a parent describing it as if a “black sack” was being pulled down over 
her head, and she could not hear, see or think in normal ways. 

Each person may react differently to the news, but there are some common 
reactions that are shared by many. Parents grieve the loss of the “typical” child that 
they expected to have. You may experience some or all of the following: 

 

· Shock or denial You may think, “How can this be happening to me?” or you 
may want to make the disability go away. 
· Anger You may be angry at yourself or others for “causing” ASD. You may be 
angry at God, at medical personnel, at your spouse, or even your child. 
· Guilt You many think there was something you could have done that would 
have prevented the diagnosis, or that you in some way “caused” the diagnosis. 
· Rejection Some parents even report having a “death wish” for their child. 
· Confusion Experiencing confusion is very common for families trying to sort 
through all the information about ASD and make choices about treatment. 
· Fear You may fear the worst or have memories of other children and/or adults 
with disabilities and wonder if your child will have a similar life. 
· Isolation Because of the unique communication, social and behavioral issues 
presented by children with an ASD, you may feel very alone. Eating out, doing 
things as a family, finding time alone with your spouse or spending time with your 
friends becomes a challenge. 
· Envy Seeing other parents with their typical children may make you feel envious 
and resentful. 
· Relief Some parents report they are glad to know that their child’s behavior is not 
caused by poor parenting, and that there is an actual diagnosis for their child. 


 

As extreme as some of these feelings may seem, they are normal. One of the ways you 
can take care of yourself is to realize that you, your spouse, or family members are not 
bad people for feeling angry or having other negative feelings — you are human. These 
are common feelings parents and families have reported as they go through the process 
of adjusting to a child’s diagnosis. You may find yourself feeling waves of grief 
throughout the lifespan at different times. Events like birthdays, school transitions, 
holidays, and other big events can trigger feelings of loss. 


If you get stuck working through the stress and grief of having a child with an ASD, seek 
help and support. 

 

Signs That Indicate That You May Need Help: 

 

· Trouble sleeping or sleeping all the time 
· Feeling tired all the time 
· Loss of appetite 
· Headaches, or other frequent pains 
· Loss of interest in sex 
· Thoughts of hurting yourself or others 
· Feeling that you have to spend every waking moment learning about autism 
and how to help your child 
· Losing all patience and desire to spend time with other members of your 
family. 


 

See a health care provider and/or counselor for help. 

 

 

Patricia McGill Smith’s You Are Not Alone article can be found at the 
web link 

http://www.kidsource.com/NICHCY/parenting.disab.all.4.2.html 

 

 

 

You Can Do This! 

 

Although at times it may seem almost impossible to handle the challenges that you are 
facing, you can do this! Remember, your child is not defined by his/her ASD. You will be 
able to parent your child successfully if you try to: 

 

· Appreciate the uniqueness of your child. Don’t compare him/her to others. 
· Focus on your child’s strengths. All children have things they do well. 
· Show unconditional love. If you find yourself taking anger out on your child or 
someone else, get help. 
· Get informed. Learn about your child’s educational and other rights as well as 
programs that can help you and your family. Ask lots of questions! 
· Don’t be overprotective. Let your child do things for himself/herself as much as 
possible. Have fun!! Find things you both enjoy and do them often. 


 


 

The Autism Speaks 100 Day Tool Kit is created specifically for newly diagnosed 
families, to make the best possible use of the 100 days following the diagnosis of 
autism. The kit contains information and advice collected from trusted and 
respected experts on autism as well as from parents of children with autism. There 
is a week by week plan for the next 100 days, as well organizational suggestions and 
forms that parents/caregivers can use to help with the paperwork and phone calls, 
as they begin to find services for their child. 

http://www.autismspeaks.org/docs/family_services_docs/100_day_kit.pdf 

 

 

Taking Care of Yourself and Your Family 

 

The demands and challenges of raising a child with an ASD can be overwhelming. 
According to the Autism Society of America, research indicates that parents of children 
with ASD experience greater stress than parents of children with mental retardation and 
Down Syndrome. The best way to help your child is to deal with your own stress. 

 

Having support can make a big difference, but you must take the initiative. You cannot 
always expect others to come to you. 

 

Share your feelings with your spouse/ partner if you have one. Reaching out to 
each other helps both of you. 

Enlist the help of friends and relatives. While they can help, be aware they may also 
be experiencing some of the same feelings of loss and confusion. Talk openly with them 
about your child and how they can help. 

Involve your faith community. Some parents find comfort in their spirituality. See 
“Issues of Faith” later in this chapter. 

See a counselor for individual or marital counseling if needed. Check with your 
doctor, mental health agency, or leader of your faith community for possible counselors. 
Ask if they have experience with special needs families. 

Find other parents who understand the challenges of raising a child with ASD. 
The importance of parent-to-parent support cannot be overstated. Other parents of 
children with disabilities can identify with your feelings of loss and frustration, help you 
find programs and funding for therapies, laugh with you, and possibly even cry with you. 
Many enjoy the company of another parent because there is no judgment, but rather a 
true understanding of how hard parenting can be. Talking with another parent is a great 
place to find practical everyday help for issues that may be hard for you right now. You 
can find support informally by meeting for a cup of coffee, joining an online support 
group, or locating local organized support groups. 

Parents report that they often learn as much from talking with other parents as they do 
from professionals and books. Parents before you have learned to negotiate education, 
funding and other service systems, and they can give you many helpful pointers on how 
to access services. 


 

 

In Kentucky you can call 
(502) 852-4631 to find out about 
parent support groups near you 

 


 

 

 

 

Online Support 

 

In this age of technology, many people turn to their computers before going to the 
library or bookstore when researching information about ASD. The Internet can also be 
a place of refuge for parents who are hesitant to talk about their personal lives in the 
more public forum of a support group meeting. There are electronic (online) groups that 
are organized around the topic of ASD so that individuals can exchange information 
about topics of common interest. They can also serve an important support function for 
people who are strapped for time to attend meetings in person or are geographically 
isolated. 

 

Electronic mailing groups or listservs are the safest to participate in. These Internet 
communities are commonly referred to as listservs (the copyrighted name for electronic 

mailing list or email list). They are also referred to as “Internet groups” or just plain 
“lists.” Both Yahoo and Google (two major Internet browsers) have “Groups” under 
their listings. Yahoo and Google both have thousands of these listservs grouped by 
categories. Particularly helpful are those online groups that are moderated, meaning 
that you must ask permission to join and someone reviews the postings to ensure that 
they are appropriate. There can be varying degrees of restrictions for membership, 
depending on how the groups were created. 

 

Listservs will have archives of old postings. In order to search the archives of a group, 
or list, you must be a member. In other words, you cannot just open up a website and 
begin to participate. This extra level of security means that members can reduce the risk 
of “spamming.” Further, moderated groups have the ability to “unsubscribe” people who 
do not abide by the rules set up for the group. 

 

While it is important to have an understanding network of family and friends to count on 
when the going gets rough, your existing circle of friends may not be able to understand 
your changing needs and their support may not be adequate. An electronic mailing 
group can be like having an autism help hotline available 24/7. 

 

For example, on a recent electronic mailing group for parents of children with ASD, a 
parent reported that his child began having sleep problems again after months of 
sleeping through the night. The list member soon received responses from several 
parents who had similar experiences and who suggested strategies they used to deal 
with the problem. Parents may use the list to locate competent caregivers for their 
children. 

 

 

 


 

“Blogs” (short for web logs) are also increasing in 
popularity. They are a kind of online journal created by 
an individual, but made public on the Internet so 
anyone interested can read about their experiences. 
Like the listservs, they can link people with common 
interests. 

KATC LISTSERV 

Learn more about up-
coming events, trainings, 
workshops, support 
groups, disability 
related information and 
other useful information 
for families and 
professionals in the 
autism community in 
Kentucky. To join 
contact the KATC at 
katc@louisville.edu 

 


Chat rooms are roundtable discussions in real time 
where several people who are online at the same time 
can send messages to one another and discuss 
particular topics. 

 

 

 

 

 

 

 

 

 

 

 

http://katcproviders.louisville.edu/ 

This database is searchable by region, county, age and service. The demands of 
caring for an individual with autism are great, and families frequently experience 
high levels of stress. Often, the lack of appropriate services adds to the 
frustration of families. As a way to assist families in finding available services, the 
KATC has created a Kentucky Autism Services and Supports Directory to help 
parents and professionals share information. 

 

 

 

Family Matters 

Take Time for Yourself 

 

Most parents of children with an ASD feel they do not have the time to do anything for 
themselves, but even a few minutes a day can help relieve stress. When we are 
stressed, our brains are working overtime and our judgment can be impaired. 
Sometimes we think we cannot stop out of guilt because we might not be helping our 
family enough. We continue to work harder and harder while getting more frustrated and 
possibly making mistakes. 

 


Simple things like taking a short walk, listening to music, or cooking a favorite meal can 
help you to feel better. Take time to think about your unique abilities and interests that 
are separate from your role as a parent. It is okay to take a break from your child now 
and then. Taking a break is good both for you and for your child. In fairness to all family 
members, it is okay for your family to occasionally engage in activities without your child 
with ASD. Take an extended break if you are able. If it seems impossible to do, start 
small and gradually extend the time. You may have to learn to relax and let go. Here are 
some tips that may help. 

 

· Set an alarm or timer to remind you to take breaks throughout the day. 
· Schedule extended breaks (a few hours a week or whatever you can manage) on 
your calendar instead of waiting until you think you can fit it in. If it is not scheduled, 
it usually doesn’t happen 
· Spend time in prayer/meditation 
· Take the time for daily exercising/walking/stretching 
· Practice deep breathing/relaxation exercises 
· Keep a journal 
· Set realistic expectations, but have a “to-do” list to guide your activities 
· Advocate for others; that is, help another parent take an action or say what they 
want or get what they need. 


 

Make Time for You and Your Spouse 

 

Parenting a typical child can place stress on a marriage. Parenting a child with special 
needs can be especially challenging. Couples need to have open discussions about 
their feelings, but they also need opportunities to stay connected and talk about things 
other than the children. Listening to and respecting your spouse’s feelings can go a long 
way to remaining close. Recognize that your spouse may handle grief differently than 
you and allow your spouse to do it in his or her way. Remember that you are a “couple” 
in addition to being “parents”. Try to find someone to care for the children and establish 
a “date night”. Going to a movie or going out to dinner once in a while can help protect 
the romance in your relationship. If you are unable to find someone to take care of the 
children, make plans for a “date” at home-perhaps having a nice dinner after the kids 
have gone to bed. It is important that you stay connected with your spouse. 

 

 

Single Parenting 

 

Many parents face parenting without a spouse or significant other because of death, 
divorce, or separation. Divorce and death/loss are two of the most stressful events for 
any family. 

 

After a divorce, the following may be beneficial: 

 

· Incorporate a visitation schedule into your child’s visual or written schedule 



· Help your children to identify their emotions, even if it makes you or them 
uncomfortable. This is very important because negative behaviors may occur when 
children do not acknowledge their emotions 
· Give your child time to adjust to the change in routine 
· Use pictures/video of the different homes your child will be going to. This will help to 
explain the change in living arrangements 
· Try to keep the rules and rewards the same in each household to help in managing 
difficult behavior 
· If possible, keep the non-custodial parent involved in your child’s development and 
education. 


 

Single parenting may require you to ask for help more often than if you had a live-in 
spouse or partner. This can be hard, but it is an important part of keeping yourself 
healthy. Being a single parent, you may find yourself concerned with how you are going 
to handle all the expenses of raising a child with ASD alone. You may also question 
how you will be able to date or have a serious relationship with someone in the future, 
knowing that you have a child with ASD. These are legitimate concerns. Remember, 
these questions have gone through the minds of many other parents of children with an 
ASD. Other parents can be your best resource. Seek the support of those who have 
experienced similar circumstances. 

 

Siblings 

 

Siblings will be in the life of a person with ASD longer than anyone else. The sibling 
relationship can have a large impact on the future of both your typical children and 
your child with an ASD. In other words, the way a typical child reacts to having a 
sibling with an ASD will affect the relationship that they have in the future. Again, it is 
helpful to hear others’ experiences. Many see having a brother or sister with special 
needs as something positive that teaches them to accept others as they are. 
Siblings can be the strongest protectors and loudest cheerleaders. In contrast, some 
siblings feel jealous, neglected, or rejected because of the time and energy they see 
being invested in the child with special needs. Typical siblings may worry about the 
future of their brother or sister and their future role in care giving. They may be 
concerned about how peers will react to their sibling with ASD and they may feel 
embarrassed. Some typical siblings become targets of aggressive behaviors. These 
can be difficult issues for parents. 

 

What do siblings need? 

Information/communication – Siblings need regular discussions about ASD that are 
suitable for their level of understanding. They need to be able to ask questions and 
share their concerns. A young child may be concerned about “catching” autism while 
older siblings may be more concerned about what is expected of them in future care 
giving. Try to make no subject “out of bounds” to discuss. 

 

Support – Just like parents, siblings need support. They need a place to talk to other 
siblings about what it is like to have a brother or sister with ASD. Look for support 


groups, Sibshops, or other programs for siblings in your area. There are also online 
support groups and listservs for siblings. (See the resources at end of the section.) If 
there is no formal group in your area, arrange some informal play dates with brothers 
and sisters of children with ASD that you know to give them the opportunity to interact 
with each other. 

 

Respect and consideration for their uniqueness – Celebrate even “expected” 
milestones for siblings. Allow them to have choices about how involved they want to be 
with their sister or brother. 

 

Safety – Siblings need to have a safe place for themselves and their belongings. Help 
them to learn to communicate with you and their brother or sister with ASD when they 
need space and time away. Be sure they know it is okay to ask for help. 

 

Individual time and attention – Plan to spend regularly scheduled time alone with your 
typical children. They need to count on a specific time that is devoted just to them. 

 

Acceptance of typical sibling behavior – Sibling conflict is normal in most 
households. Expect conflict and know this may help prepare the child with an ASD for 
real-life situations. Don’t always expect the typical sibling to compromise or “know 
better.” 

 

Opportunities to have a “normal” life – Give yourself permission to take a trip without 
the child with an ASD. Try to find respite resources so siblings can fully experience 
things they choose. Both siblings and the child with ASD need chores and 
responsibilities equal to their abilities. Don’t assume that because your child has an 
ASD he/she does not have the ability to help around the house. 

 

Strategies for dealing with their sibling, peers, and their own emotions – Siblings 
need to know how to deal with the unusual behaviors that are often exhibited by their 
sibling/s with ASD. They also need some guidance in how to deal with questions from 
peers and the general public. Siblings need to know that it is okay to feel embarrassed 
about their sibling or to worry about him/her. Sometimes the assistance of a 
professional counselor can help the typical child to cope. 

Positive parents – Probably the greatest impact will be the attitude of the parent(s). 
Being positive will help you meet the challenge. How we choose to deal with our own 
emotions and attitudes will impact our experiences. 

 

The following was written by a teenage girl with a brother with an ASD 

 

cd 

My brother has autism. His diagnosis has changed our family, from the constant presence 
of a therapist and dietary changes that encompass the whole family, to accommodating 
his sensory issues in all that we do. However, to dwell on these aspects implies that 
autism defines our family, when this is not the case. We simply do what must be done for 
him; all that this entails has become our norm. In the process of living with and loving 


him, we have learned to cherish his true essence, rather than focusing on the superficial 
actions or differences of autism. 

 

My brother has autism. Most of the time, I hardly think about it. But sometimes, when he 
and I are sitting together on the couch, I am overwhelmed with a painful and instinctive 
consciousness of an intangible barrier between us. I can sense the person inside my 
brother, shielded by autism. During these moments, I mourn for the relationship that has 
been denied us. Despite the pain, I am able to realize how blessed I am to know and love 
the sweet, gentle part of him that escapes the autism barrier. 

 

As my brother and I enter our teenage years, our future lives, as adults, loom closer with 
each passing day, as is evidenced from his changing voice and newly acquired height. 
The unknown aspect of his future is frightening. Right now my parents are my brother’s 
primary caregivers, but how will this role change in the future? I wonder if I will be 
capable of handling the responsibility of this position when the time comes. The future, in 
addition to posing challenges for me, contains incredibly difficult hurdles for him, 
including finding friends, activities, a job, and an independent life. While my family is 
doing everything we can to prepare him for his adult life, the uncertainty of what lies 
ahead for him is achingly real. 

 

Above all, I wish that he will always be surrounded by love. If the world could see what 
we do when looking at him, instead of being blinded by his autism, my wish would be an 
instant reality. But this is not a perfect world. Therefore, my family and I will continue to 
fight for him, attempting to ensure a fulfilling and meaningful life for him. 

 

Natalie Pope 

ba 

 

 

 

Grandparents and Other Family Members 

 

Like parents, grandparents grieve the loss of the “typical” grandchild and are concerned 
for their own children in the process. They, too, will need information, open 
communication, and recognition that they are grieving. Many well-meaning family 
members offer advice on behavioral issues. However, parents can become frustrated 
and perceive a lack of support when grandparents do not agree with the parents on how 
to handle difficult situations with their child with ASD. Open communication and 
information can help enhance your support and allow family members the opportunity to 
learn about your child. 

 

cd 

“Why do you have to travel so often to see your grandchildren?” Was so often asked by my 
relatives and friends. At the time, I had one grandson in Atlanta and one granddaughter in 


California. My response was, “You’ll never understand until you have a grandchild of your 
own.” 

As time passed, my daughter gave birth to twin boys and moved to Kentucky with her family. 
A few months later, Eric, one of the twins was diagnosed with autism. As a result, Grandpa 
and I visited every two to three months offering as much help and support we possibly could 
during those short stays. This continued for a few years. One day Grandpa suggested we 
moved to Kentucky and be full-time grandparents. My first reaction was that my husband 
was not serious about the move. I was so wrong. 

“Why or how could you give up 42 years in the same home, leaving your family and friends, 
and move to KY?” My response was a little different this time. “You could never understand 
unless you had a grandchild with autism.” 

Our new journey began in October 2007 with our move to Louisville. Entering blindfolded 
and unaware of what autism really is, how can we possibly help? 

I can only speak for myself. Looking at my three grandsons, I burst with love. With Eric 
there is an added feeling of heartache knowing he does not communicate much or have fun 
with his brothers like they do with each other. Mostly, I carry this feeling of guilt because I 
want to make everything okay. I want Eric to say, “Grandma, it’s okay.” and “Grandma I 
love you.” 

Will the day ever come when he can leave his own little world to enter ours or allow us to 
enter his? Meantime, I will continue to love him, and let him know how special he is. I will 
do all I can to help Eric and his family. 

Hopefully this will lessen the feeling of guilt. Why can’t I make him better? After all, I am 
Eric’s GRANDma. 

Jean Mannarelli 

ba 

 

Family/Social Gatherings 

 

Holidays, family reunions, birthdays, visiting relatives, and other special celebrations 
can be especially stressful for a child with ASD. These activities may bring about 
unexpected events as well as excessive amounts of sensory stimulation. Such 
situations can contribute to anxiety and the child can soon feel overwhelmed. 

Writing a letter before family visits can help make the event more enjoyable. Share the 
things that will help your child feel comfortable, activities that he/she enjoys, foods 
he/she likes, and how family members can expect your child to respond when situations 
may be too much for him/her. Bring special toys, videos, games, or other comfort items. 
Be sure to plan frequent breaks when traveling. Finding a place where your child can 
take a break from the crowd will help the visit be more enjoyable for everyone. 

Holidays bring lots of change and increased social demands. Consider keeping the 
decorations simple and safe. Make sure your decorations will not choke or harm your 
child if he/she were to touch them or place them in his/her mouth. Send a list of 
preferred gifts to family members to help everyone feel more fulfilled. This way your 
child will receive a gift he/she prefers and the family member may get to witness him/her 


enjoying the gift. Prepare your family for the possibility that your child may not want to 
participate in opening gifts or consider setting a limit on the number of gifts he/she is 
expected to open. At home, you may allow your child to open a gift a day so he/she is 
not overwhelmed on the actual holiday. Consider using a social narrative or social story 
to describe what will happen at holidays or birthdays or other special events. 

If you plan to attend a family reunion or other large gathering, showing your child 
pictures of the unfamiliar people and places ahead of time may help ease anxiety. 
Preparing both your child and your family through open communication is always 
helpful. 

 

 

For other ideas see the book Finding Our Way by Kristi 
Sakai (www.asperger.net). 

 


 

Day-to-Day Issues in Living with ASD 

This section is a broad overview with suggestions for navigating the many situations 
and decisions parents face as they negotiate their daily lives to support their child with 
an ASD. It covers friendships, finances, approaching therapy and education decisions, 
creating a workable daily home schedule, dealing with doctor appointments, and even 
discusses issues of faith. 

 

Balancing Life on the Spectrum 

 

It is easy to feel overwhelmed by all the decisions that you will be making while living 
with an ASD. It can be challenging to find time and ways to help everyone feel valued 
and get their needs met-not to mention having your own needs met-as discussed 
earlier. If everything in your family revolves around your child with an ASD, other family 
members can become resentful. Do you define your family as a special needs family or 
a family with a special needs child? Finding the proper balance in decision-making and 
making choices that fit your family will help ease the stress of day-to-day living. 

 

You may be wondering… 

· Should I/we have another child, knowing there is an increased risk for having 
another with an ASD? 
· Should I/we have another child so there is a sibling to take care of our ASD 
child when we are gone? 
· Should we move or sell possessions to get better services? 
· How many assessments and therapies are necessary for my child? 


 

Evaluate your decisions carefully and try to keep some balance in your everyday life. 
Consider how decisions will impact your whole family and not just the child with an ASD. 
Unfortunately, there are people who take advantage of families that are desperate to 
help their child. Carefully research the services and/or treatments that are being offered 
to you and your child with ASD. Select the services according to what best meets the 


needs of your child and family. While searching for answers you will find opinions that 
may differ even among the “experts.” Take one day at a time and try to keep your 
routines as normal as possible. It will help provide some consistency when things are 
hectic. 

 

Your Changing Circle of Friends 

 

One of the most difficult and surprising aspects of learning that your child has a 
diagnosis of ASD is discovering that your circle of friends will change. Your friends and 
close family members can be a true source of support and encouragement. 
Unfortunately, when we need our friends and family the most, sometimes they are not 
as supportive as we had hoped. As a result, you may find yourself confiding in total 
strangers at a support group meeting or seeking comfort in the listening ear of a 
coworker when you used to share everything with your sister, or your best friend. 

 

Individuals are just that – individuals. The people who have been closest to you may 
react to your child’s diagnosis in a variety of ways, just as parents react in a variety of 
ways. Some may be in denial while others may express a genuine sadness. Keep in 
mind, though, that your closest friends and family members love and care about you 
and your child. Their concern is for your well-being as much as it is for your child’s. 

 

When an adult friend or relative has experienced a life-changing event, many people do 
not know how to react. Some friends are uncomfortable in the presence of people with 
mental retardation or developmental disabilities. Others withdraw in fear that they would 
say or do the wrong thing. This may be true if your child has challenging behavior or has 
yet to attain functional communication. In an effort to be supportive, people may say all 
the wrong things: 

 

“My cousin’s son didn’t talk until he was 4, and now he’s a sophomore in 
college.” 

“Einstein was autistic, you know.” 

“Well at least he can walk.” 

“I saw a lady on TV whose son’s autism was cured with (fill in the blank).” 

“God gives you only what you can handle.” 

 

Others may be blunt: 

 

“That kid just needs a spanking now and then!” 

“Get over it!” 

 

 

You will no doubt hear statements that will hurt your feelings or cause anger. It is 
difficult enough to ignore a stranger, but we expect much more from those close to us. 
Parents are vulnerable, especially when new to the diagnosis. If you are having difficulty 
with feelings of depression or anger, consult a professional counselor who has 
experience in working with parents of children with chronic disorders. A chaplain at the 
nearest children’s hospital may be able to provide appropriate resources or referrals. 

 

Also consider that, although we have crossed into the 21st century, many adults today 
did not grow up with much exposure to people with cognitive disabilities. And certainly, 


most did not attend school with children with disabilities. So the reactions of your friends 
and family members, especially the older ones, may simply be due to a lack of 
knowledge. 

 

The best way to react to these situations is to share information about ASD, and to 
encourage friends and relatives to spend time with your child. Invite them to your 
support group meetings or ask them to accompany you on a doctor visit. Explain to 
them that you not only need their moral support, but you also could use a little respite 
from time to time. The better they know your child, the more willing they may be to help. 

Make a mental note every time someone offers to help, however generic the offer may 

be. If you are experiencing a particularly difficult week, ask someone to run errands for 
you, help with laundry, or pick up your children after school. If you are affiliated with a 
church or a social club, fellow members may be willing to assist in some way on a 
regular basis. Be comfortable in asking for help when there is a need. Many people are 
happy to help. You will be supported, and your child will be exposed to a variety of 
people and personalities in the process. 

 

Your daily routines have probably changed since your child’s diagnosis. Much time is 
now spent with therapists, teachers, medical specialists, and other providers who 
understand and accept your child. It may be easy to consider these new adults in your 
life as your new friends. You may look forward to the brief encounters with professionals 
who truly understand. Certainly, they may be friendly people, and they can be a 
tremendous source of support to you; however, your real friends should not be 
forgotten. Include them as much as possible in your new routines. Think outside the box 
when planning visits with your friends. While your life may have changed, your friends’ 
lives probably have not, so try not to let autism be the topic of every conversation. 

 

Parents, grandparents, and siblings largely report that support groups have been very 
helpful. However, others are uncomfortable with the candid expressions of feelings and 
vulnerability displayed at support group meetings. Attending casual gatherings or 
informal activities sponsored by autism groups may be an easier way for some parents 
to meet new friends. Some areas in Kentucky have successfully started support groups 
and other activities just for dads, grandparents, or siblings of autistic kids. These 
provide opportunities for the attendees to meet other people who share similar 
experiences. 

 

Family Finances 

 

Having a child with ASD can be a drain on a family’s resources due to the cost of 
expensive evaluations, home programs, and therapies. One family member may have 
to give up his or her job because of the care-giving demands of raising a child with 
autism, increasing financial pressures as a result. Because of the challenging behaviors 
often present in children with ASD, many parents find the need to seek out jobs with 
flexible hours or work different shifts so one parent is at home all the time. Some 
parents have developed their own home-based businesses, and still others rely on 
some form of government assistance to manage. 

 


Networking with other parents, getting involved with local support groups or chapters of 
ASA will keep you informed of the latest sources of funding and other supports that 
could help. It may be difficult for you to ask for help, but there may be untapped 
resources out there. 

 

Things to consider related to finances and funding services: 

 

· If insurance denies a claim, appeal it. 
· Parents in the same insurance company can ban together. One company 
planned to drop coverage for speech therapy, but after several parents called 
and wrote letters, the benefit was reinstated. 
· Ask providers if they have fees based on income. 
· Use college students to help. They are more affordable these students may be 
able to earn course credit. 
· Use volunteers from your community if you are doing a home-based program. 
· Ask that money be given for services to help your child instead of extravagant 
toys and gifts. 
· Consider hosting your own fundraisers. 
· Explore possible tax deductions with your tax advisor. 
· Consider consulting a Certified Financial Planner to discuss a Special Needs 
Trust and other financial planning issues. 


 


 

10 Things I Want My Friends to Know 

Ø My life has changed, but I still want you to be my friend. We may 
need to be creative in thinking of new ways to spend time 
together. 
Ø Listen. I want you to know about my child and about how his life 
is affected by ASD. I may have days when I just need to “vent.” 
Ø Keep what I say confidential. As my friend, you may 
occasionally be my sounding board. Please respect the privacy 
of my family by not repeating what I say. 
Ø Don’t judge my child or me. Ask questions if you have concerns 
about the choices we have made for our child. 
Ø Respect my feelings. My feelings may run the gamut from 
desperation to hopefulness and will change largely based on 
what kind of day my child is having. 
Ø Encourage and support me. I need to hear positive feedback. 
Be my guest at a support group meeting, or offer to keep my 
child while I go. 
Ø I really am happy for the milestones that your children are 
reaching. Don’t exclude me from your celebrations; however, 
please understand if I am not always able to attend. 
Ø Ask questions. I’ll be happy that you are interested. 
Ø Communicate with me. Please let me know if you can or cannot 
help with my child. It is OK to tell me if you are uncomfortable. I 
need to know how you feel. 
Ø Be my advocate. Other friends or acquaintances may not 
understand or may be judgmental. You may be able to keep 
them abreast of my child’s progress and our family’s needs. 


 


 

 


Daily Functioning at Home 

 

In addition to dealing with friends and finances, parents often find that they must create 
a daily home schedule that supports the child with an ASD and the family as well. 
Families engage in daily routines within the household that are executed with little 
thought or planning, and certain activities continue to occur without question over and 
over again. They are a part of living, a part of being in the household. These include 
activities such as: 

 

Bedtime Going to the grocery store/errands 

Bath time Household chores 

Meals Getting ready for school 

Play time Having other children visit the home 

Nap or quiet time Toileting/self-care 

 

Although a variety of strategies could be suggested here for each activity to help a child 
with ASD cope more easily, it is important to focus on the underlying characteristics and 
environmental factors of each child and each home situation as you think about these 
routines. As you encourage your child with ASD to participate in these routines and gain 
adaptive skills, consider the following: 

 

Understand that your child’s age may not equal his developmental level 

 

It is important to remember that children with ASD often vary in developmental levels 
across areas. For example, a child may be on level with typical peers in communication 
skills, but lower in social interactions. Even within one area, a child’s skill level can vary. 
A child might be comfortable entering into a conversation, but unable to maintain the 
conversation. With daily living skills, a child may be able to set the table with utensils for 
dinner, but may become overwhelmed when asked to clear the table and put away 
leftover food and dishes. 

 

Create realistic expectations 

 

As expectations are being created for the child, make sure they are appropriate for 
his/her ability level. Utilize skills that the child has mastered to build confidence and 
encourage the use of new, emerging skills. Take time to teach a task in small 
increments so that if a problem arises, the problem step can be re-taught and 
supported. Look for ways to break down complex tasks into smaller pieces so the child 
will be successful. For example, if a child is 18 years old, but developmentally 7 years 
old, do not expect him/her to do a full load of laundry alone. Consider steps for each 
task, such as gathering the dirty clothes, sorting by color and whites, or putting away the 
clothes when the laundry is complete. As the child masters one step, add another to 
build the child’s ability to complete the entire task. 

Understand the difference between schedules versus routine 

 

Maintaining a routine is different from keeping a schedule. For example, a bedtime 
routine may be flexible in the schedule because it is not always precisely at the same 
hour. However, the bedtime routine stays structured in that the child always gets to 


have one book read, is tucked in by a parent, and goes to sleep with his teddy bear. 
This allows for flexibility within the schedule while maintaining a routine. 

 

 

For more detailed information on intervention strategies for a 
specific routine, refer to Everyday Solutions: A Practical Guide 
for Families of Children with Autism Spectrum Disorders by Mindy 
Small and Lisa Kontente (www.asperger.net). 

 


 

 

 

 

 

Hygiene 

 

Hygiene can pose challenges for individuals with an ASD in multiple areas. Most 
hygiene tasks involve lots of sensory information that can be overwhelming. Self-care 
usually involves many steps as well as motor planning. Socially, many individuals with 
ASD miss the importance of good hygiene as well as unwritten rules that go with visiting 
public restrooms and other social situations that relate to care of their bodies. The 
seemingly obvious, such as bathing regularly or wearing clean clothes, may not be 
important to children with ASD since they may not understand their significance. This 
understanding, along with the skills related to hygiene, will need to be taught. 

 

There are many unwritten social rules related to self-care. Early on, we may be worried 
about just teaching the tasks, but as children get older and more self-aware, it is 
important to teach them the social behaviors that many of us take for granted. The 
following are just a few examples of the “hidden curriculum” that must be directly taught 
to children with ASD. 

Public vs. Private Behavior 

 

· Teach proper urinal behavior for boys such as not lowering pants fully to the 
ground or looking at others’ body parts while toileting. 
· Make it clear that scratching or adjusting one’s private parts or underwear is not 
to be done in public. 
· Teach that it is not appropriate to pick one’s nose in public. 


 

For Teenagers 

 

· Help them learn what is “in” and what is “out.” 
· Help them understand how much first impressions count. 
· Help them see how hygiene can affect relationships and even employment. 


 

Although challenging, teaching children to take proper care of themselves is a huge 
step toward independence. Many of the tools used to help in other areas are equally 
helpful when it comes to personal hygiene. For example, visual/written schedules, social 
narratives, desensitization, and gradual exposure to a task can all be used to help 
individuals with ASD learn new tasks. 

 


Consider the sensory issues that are involved with these tasks. Hands and heads are 
some of our most sensitive areas. Select among the following options for making this a 
less traumatic experience for your child with ASD: 

 

· If your child is a sound sleeper, trim hair and/or nails at night. 
· Find a hair stylist who will come to your house. 
· Play relaxing music or find a distracting toy, video game, or a favorite television 
show to occupy the child while the haircut or nail trim is occurring. 
· If going to a stylist, visit the shop several times before actually going for a haircut. 
Use pictures or video to illustrate what is going to happen. 
· Pick a time when the shop is not so busy. 
· Go frequently, even for just a small trim, rather than wait a long time between 
haircuts. 
· Experiment to determine whether clippers or scissors are better. Some children 
like clippers because they can make the cutting go faster, but they can also 
sound louder. 
· Consider combing hair more than once a day to get used to the sensation. 
· For nail trimming, do a finger at a time with breaks in between until more 
tolerable. 
· Put hygiene checks into your child’s daily schedule. Remember: If it is not seen, 
many do not think about it. Simply reminding them to look in the mirror may be 
enough. 


 

Hand and Body Washing 

 

Preferences are important for motivation. Consider the following: 

 

· Does your child prefer aromas or textures for soap? Consider foam vs. bar vs. 
liquid. 


 

· Does your child prefer a certain water temperature? 


 

· Does your child like soft or rough washcloths and towels? 


 

· Does your child prefer a schedule or list of tasks to be performed while washing? 


 

· Is hand-over-hand support provided to help the motor planning and memory? 


 

Toileting 

 

Becoming toilet trained is one of the most important skills that your child will need to 
learn, and it is not easy. It takes real commitment from parents and caregivers, but it 
can be achieved with a systematic approach. This text is only a brief outline of one 
method. Refer to the resources after this section for more information on toileting. 

To begin the process, your child should be able to: 


· Follow simple directions. 
· Sit in a chair for 5 minutes. 
· Stay dry for 1-1/2 hours 


Skills Involved in Toileting 

 

Initially, focus only on teaching your child to eliminate in the toilet. Later, teach the other 
skills needed to be completely toilet trained, including: 

· Recognizing when he/she has to go 
· Waiting to eliminate 
· Entering the bathroom 
· Pulling pants down 
· Sitting on the toilet 
· Eliminating in the toilet 
· Using toilet paper correctly 
· Pulling pants back up 
· Flushing the toilet 
· Washing hand 
· Drying hands 


 

In the beginning, going to the toilet should be a casual matter with little required on the 
child’s part other than to sit. In a 20-minute period, give your child two 5-minute chances 
to eliminate with a 10-minute break in between. 

 

Elimination Records 

 

About two weeks before you are ready to start toilet training, start recording when your 
child urinates and has a bowel movement to establish her elimination pattern – the 
times of each day when she is most likely to wet and/or soil her pants. 

 

 

Monday 

Tuesday 

Wednesday 

Thursday 

Friday 

Saturday 

Sunday 

Time 

Pants 

Toilet 

Pants 

Toilet 

Pants 

Toilet 

Pants 

Toilet 

Pants 

Toilet 

Pants 

Toilet 

Pants 

Toilet 

7:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

8:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

9:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

11:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

12:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

1:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

2:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

3:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

4:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

5:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

6:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

7:00 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



 

In the Pants column, you will record every hour: 

D=dry 

U=Urinated in pants 

BM=Bowel movement 

U/BM=Both 


During these two weeks, there is no failure or success. You are only trying to see what 
your child’s elimination pattern is so that you can set up a toileting schedule that makes 
sense for him/her. 

Determining a Toileting Schedule 

 

The bathroom routine should be: 

· Bring your child to the bathroom on schedule or when he/she signals. Pull his/her 
pants down to below the knees, encouraging her to do the rest. 
· Have him/her sit on the toilet for 5 minutes. Stay with him/her, praise him/her, 
and explain what is expected in a straightforward, non-demanding 
· If he/she eliminates, praise her and give her a reward. 
· If he/she does not eliminate, remove him/her from the toilet, and take him/her out 
of the bathroom for 10 minutes. Return to the bathroom for another 5-minute 
sitting. 
· Carefully analyze the Elimination Record. At this point, decide whether you will 
focus on urine or bowel training. For this example, we focus on urine training. 
· Circle all the U’s on the forms and add them up. 
· There will be a greater number of times for urination. Select four or eight times 
during the day when your child is most likely to eliminate. No two times should be 
closer than 1-1/2 hours. 
· Arrange the toileting schedule so that your already established toileting times for 
bowel training become a part of it. 
· Take the child to the toilet at all the schedule time. 


 

Putting the Child on the Toilet 

 

The bathroom routine should be: 

 

· Bring your child to the bathroom on schedule or when he/she signals. Pull 
his/her pants down to below the knees, encouraging her to do the rest. 
· Have him/her sit on the toilet for 5 minutes. Stay with him/her, praise him/her, 
and explain what is expected in a straightforward, non-demanding way. 
· If he/she eliminates, praise and give a reward. 
· If he/she does not eliminate, remove him/her from the toilet, take him/her out of 
the bathroom for 10 minutes. Return to the bathroom for another 5-minute 
sitting. 


 

In the beginning, going to the toilet should be a casual matter with little required on the 
child’s part other than to sit. In a 20-minute period, give your child two 5-minute 
chances to eliminate with a 10-minute break in between. 

 

 


Using Visual Cues 

 

You may create visual cues, consisting of photographs or pictures, to support the 
toilet-training process. A good aid to use during toilet training is a visual schedule to 
help the child through the toileting procedure. Here is an example: 

 

 

 

 

 

In addition, a special visual prop can be helpful in setting the tone and in alerting your 
child to the activity. An example is to give the child a rubber duck when you want 
him/her to use the bathroom. Parents of nonverbal children may also consider 
incorporating sign language or a picture into the routine and teaching the child the sign 
or picture for toilet so the child will learn to indicate when he needs to use the restroom. 

 

Intensive Training 

 

Another method is called “intensive training” or “weekend training.” It consists of 
spending the entire day in the bathroom focused entirely on toilet training. This 
approach also uses the Elimination Record to record times when the child was placed 
on the toilet. 

 

Using this method, the child is dressed in only a shirt and remains on the toilet until he 
eliminates. Once the child eliminates, he is given a 5- to 10-minute break, then placed 
on the toilet again. The child is given plenty of fluids and salty snacks to encourage 
elimination. Parents use favorite toys in the bathroom to occupy the child. 

 

 


Sensory Issues 

 

Parents face some consistent problems relating to sensory dysfunction when trying to 
toilet train a child with ASD. Many children on the spectrum are sensitive to such things 
as the feel of the water splashing from the toilet, the texture of the toilet paper, the 
sound of the flushing, the feel of the toilet seat, and the list goes on. It is not uncommon 
to see the following demonstrated by some children with ASD: 

· Flushing or playing with water in the toilet 
· Playing with toilet paper 
· Smearing feces 
· Being “addicted” to diapers 
· Refusing to wash hands 
· Refusing to eliminate in toilet 
· Being afraid of flushing or frequent flushing for noise 
· Refusing to sit on toilet 


 

 

Set the Stage for Success 

 

Be consistent: Keep the toileting routine as consistent as possible so that your child 
will come to expect it and be at ease with it. 

 

Use a regular toilet from the beginning: If your child is too small, place a smaller seat 
on top of the regular toilet. 

 

Avoid distracting toys and people: It is important for your child to learn that the 
bathroom is not a playroom; he is there for one reason only- to eliminate in the toilet. 

 

Avoid distracting talk: Talk to your child about what he is supposed to be doing and 
what the toilet is for. Avoid talking about unrelated matters. 

 

Puberty 

 

Puberty can be an exciting time in a young adult’s life. It’s the time when the body 
makes many changes – both physical and emotional – to prepare for adulthood. It is a 
good opportunity to teach teenagers with ASD about their bodies and how they work. 

When children become teenagers, their bodies start to dramatically change. They begin 
to grow pubic and underarm hair. They start to break out with acne. Girls begin to 
menstruate. Boys’ voices change. For teenagers with ASD, these changes to their 
bodies may be frightening if they are not forewarned and prepared. 

Parents need to decide the best way to talk with their teenagers with ASD about human 
sexuality based on their beliefs and traditions. Basic introductions should address the 
following topics: 

 

1. Describe the basic physical changes that occur on the outside of the body during 
puberty. 


2. Describe the basic physical changes that occur inside of the body during puberty. 

3. Describe the basic emotional changes that occur during puberty. 

4. Identify ways to manage or handle these changes. 

 

Puberty 

 

Typical Changes 

Changes in Girls 

Changes in 
Boys 

 

 

Increased attention to physical 
appearance 

 

 

Growing breasts 

 

Erections 

 

Interest in romantic love 

 

 

Beginning periods 

 

Wet dreams 

 

Increased need for independence 

 

Premenstrual 
syndrome 

 

 

Masturbation 

 

 

 

 

Unpredictable changes in mood 

 

 

 

 

 

 

Desire to be accepted and liked by peer 
group 

 

 

 

 

Pubic and underarm hair 

 

 

 



 

 

Human Sexuality 

Eva Markham, Ed.D. 

 

When we think about sexuality, we tend to fast forward to romantic, consensual 
relationships between adults. Most of us, as parents, would prefer not to spend a lot of 
time thinking about our children and sexuality. Somewhere along the line, we may 
impart a few choice nuggets of information about physical growth and development. 
Most parents also attempt to communicate their personal values on topics such as 
premarital sex, same sex relationships, etc. Much of what is viewed as a part of the 
general area of sexuality is very socially derived. For this reason, it is imperative that 
caregivers and educators who care for young persons on the autism spectrum take a 
life-span approach to sexuality. This is of value for two reasons: 

 

First, the young person can develop to the fullest of her or his abilities and have the 
skills necessary to engage successfully with another person in a romantic/ sexual 
relationship if that is her or his choice. Second, and sometimes more important, 


teaching the complex nuances of sexuality may enable young persons with an autism 
spectrum disorder to avoid becoming the object of criticism or scorn for exhibiting 
behaviors that others find offensive or sexually inappropriate. Some common examples 
include the youngster with autism who fails to develop the sense of modesty typical 
peers usually get around puberty or the young woman with autism who is too direct in 
her expression of interest in a young man she has just met. 

 

Individuals who are involved with youngsters having autism spectrum disorders may 
wish to peruse some of the links appended to this article and decide how best to 
approach the topic of sexuality/ sex education given her or his own values and comfort 
level. In all likelihood, it will be helpful to recognize that a much more structured 
approach to teaching in this area may be needed for the individual with autism. While 
those of us who are “typically developing” likely learned a lot about sexuality and related 
topics through observational learning and through our peer relationships, this mode of 
information will be less successful for persons on the autism spectrum. To view the 
component parts of sexuality education as ongoing and natural will be helpful. Thinking 
in terms of such broad areas as public versus private, acceptable versus unacceptable, 
safe and unsafe may make it easier to approach the myriad behaviors that comprise 
sexual behavior. Just as we have learned that certain teaching strategies are better for 
educating persons having autism, so can we use those same techniques to assure that 
the individual is prepared to be a safe, happy, and successful member of our culture, 
equipped with all the skills she or he will need to form lasting relationships if that is his 
or her choice. We can be assured that we have added to the quality of life of persons 
with autism spectrum disorders. Last, but not least, we can consider that we have 
enabled the individual to be safer, and less likely to be victimized or penalized. 

 

Safety 

 

All too often, we hear about stories such as these: 

 

A boy in Florida slipped out of a house crowded with family members during a holiday 
celebration. He was found in the bottom of a pool, said Wendy Fournier, president of the 
National Autism Association. 

 

Many children with autism, unfortunately, do not recognize safety issues when they 
arise. They also may have difficulty identifying an oncoming dangerous situation. With 
many of our children unable to clearly communicate to other individuals or understand 
what someone may be saying to them, they are capable of being in great danger more 
often than not. 

 

Children with autism can be very curious individuals, to the point that wandering from 
home is more common than the general public realizes for these families. Many times, 
we hear of stories of children with autism wandering into the streets, pools, and woods. 
Many times, we hear of the sad ending when these children were not found until too 
late. 

These incidents can happen any time of the day or night, whether a parent, babysitter or 
grandparent is watching the child. These incidents also happen at relatives homes and 


when people are off guard. There could be many people at the home for a family 
gathering and the child slips away easily. Other times, the child darts out of the house 
and is gone in an instant. 

 

The following are suggestions to help increase the safety of your child in his or her 
surroundings: 

 

· Take a walk around your neighborhood streets and see how many fences, 
wooded backyards or pools exist. Get a sense of where in the neighborhood you 
might look your child wandered off 
· Check your home’s windows and doors and the types of locks on them. 
· Circulate photos of your child to neighbors and let them know a child with autism 
lives close by. Make sure they have your name and phone number. Many 
children with autism do not know this information, especially their phone 
numbers. 
· Visit the local police and fire stations with a photo of your child, if at all possible. 
· You may want to investigate the use of tracking bracelets with GPS devices. 


 

Besides the risks of a child that could escape from home, there are also dangers inside 
the home at various times of the year. During the holidays, you need to be very 
cautious with Christmas trees and decorations, especially if your child is a climber. 
During the summer months, you may be cooking outdoors on the grill and pool dangers 
may be evident. Screen doors may not be locked at all times. 

 

If your child has ever escaped from your house, this is a warning sign and you need to 
take action. Everyone who works with your child needs to know this could happen 
under their supervision. 

 

Consider the many behaviors an individual with autism may engage in that could be 
unsafe: climbing, throwing, breaking, jumping, peeling, cutting, pulling down, throwing 
plates and cups, sweeping items off surfaces, dumping drawers and bins, and climbing 
out of or breaking windows. Or consider what can happen when natural curiosity and 
household appliances converge: putting items in appliances, flushing things, touching 
burners, turning hot faucets, inserting items into electrical sockets, chewing on wires, 
and crawling in a washer or dryer. Finally, consider the potential dangers that can result 
from playing with matches, lighters or fire. 

 

Often children with autism who display such behavioral concerns do not understand the 
ramifications of their actions. At best, these behaviors can be bothersome and at worst, 
can be devastatingly tragic. Therefore, it becomes incumbent upon the caregivers in the 
home to provide both a safe environment and ways to teach their children to be safe. 

 

There are several environmental and safety modifications that can be made in the 
home, as well as steps that can be taken to prevent unsafe or inappropriate behaviors. 

Many strategies have been found to be helpful in preventing dangerous behaviors and 
ensuring a safer environment. The suggestions range from using locks for security, 
limiting access to the individual, to labeling every functional item and area in the home 
with photographs or symbols to assist in communication. 

 


Sometimes parents balk (initially) at the idea of having to place locks on doors or 
cabinets, having to place alarms outside a child's bedroom, or having to label the house 
with photos or cards. They often say: "This is not a classroom." However, your home is 
indeed a natural learning environment, just like a classroom. 

 

Establish priority areas for modification. Modify the most important areas first - such as 
the individual's bedroom, bathroom, leisure areas, kitchen, and back yard - since these 
are the primary areas of interaction for many children. When getting started, think about 
the room(s) in which your child spends the most time; for some children it would be a 
recreation/ family room, for other children it might be the bedroom or kitchen. In 
addition, consider the behaviors to be modified and the relationship of those behaviors 
to the environment. Behavior modification works to alter an individual’s behavior 
through positive and negative reinforcement. Remember that behaviors always serve 
some purpose--and in order to alter a particular behavior it must first be understood. If 
the individual likes to put things in the toilet or run hot water in the bath, modifications 
should begin in the bathroom. If your child runs out of the house, modifications should 
begin with securing exterior doors with locks. 

 

Elopement or Wandering 

 

Have you ever found yourself worrying about your child wandering off and getting lost? 
All parents are concerned about their child’s safety – whether the child has special 
needs or not. The concern of parents of children with ASD is often heightened due to 
the child’s deficits in communication and socialization. 

You can use direct instruction to teach your child that wandering away is not 
appropriate. You can use stories to explain that it is dangerous for your child to leave 
your house or yard. Still, some children and adolescents with ASD have an 
overwhelming desire and talent for leaving their homes and wandering unattended. This 
does not only happen at home. Children often wander away from a parent at a busy 
store or at the park. This is very dangerous because most children with ASD do not 
understand or obey the rules of the road or private property. 

Neighbors can be very helpful in keeping an eye out for your child. Talk to them and 
explain what to do and how to approach your child if they should see him out alone. You 
can also inform neighborhood children and teenagers about what to do if they see your 
child out alone. 

Make sure to contact your local police and fire department to alert them about your child 
and his/her tendency to wander. They should be able to “red flag” your telephone 
number and home if you ever call 911. This specific information may be embedded in 
the 911 database, so that the dispatcher will be able to tell the police and fire 
department about your child before they arrive. 

If wandering is a typical problem for your child, you can install extra locks on all exterior 
doors high enough so your child cannot reach them, even when standing on a chair. 
Many parents have installed sliding bolt locks on the top frame of the door. There are 
also bed and door alarms available to signal when a child or adolescent is out of bed or 


opens a door or window. You can even get an alarm that plays a recorded message 
when a door is open, like “Jack! Do not leave the house!” and then sounds a siren to 
alert the parent. Children or adolescents can also wear bracelets that trigger an alarm 
once they pass through a protected doorway. 

A very helpful precaution is to have a medical identification tag for your child to wear 
that lists name, diagnosis and contact information. These can be ordered at a drug store 
or online from MedicAlert. These medical emblems can be worn on the wrist, around the 
neck, or laced into a shoelace. 

To be prepared, parents can create an emergency handout about their child for the time 
when they do wander off. 

Sample Autism Emergency Contact Handout 

If your child is a habitual wanderer, keep a copy of this handout at home, at school, 
in the car and on their child in case of an emergency. The sheet should include the 
following information: 

 

· Name of child 
· Current photograph and physical description, including height, weight, eye 
and hair color, any scars or other identifying marks 
· Names, home, cell and pager phone numbers and addresses of parents, 
other caregivers, and emergency contact persons 
· Sensory, medical, or dietary issues and requirements 
· Inclination for wandering and any atypical behaviors that may attract 
attention 
· Favorite attractions and locations where child may be found 
· Likes and dislikes as well as approach and de-escalation techniques 
· Method of communication. If nonverbal – sign language, picture boards, 
written word 
· ID jewelry, tags on clothes, printed handout card 
· Map and address guide to nearby properties with water sources and 
dangerous locations highlighted 


 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Out in the Community 

 

As parents of a child with an ASD, we are familiar with our son’s or daughter’s behavior, 
but others may not be accustomed to this disorder. Most of our children appear normal 
to others. It is only when they start to exhibit bizarre or out-of-control behavior that they 


come to the attention of others. Outings in the community can be a great challenge for 
most parents. 

Tips for Successful Outings 

 

· Keep outings short. 
· Do what you say you will do in the order you say you will do it. 
· Decide on the optimal number of stops. 
· Do the most important things first. 
· Prepare a visual schedule for your child. 
· Offer a reward at the end of the outing for good behavior. 


Shopping Trips 

 

One of the biggest challenges a family faces is the weekly shopping trip. Sometimes it is 
considered more trouble than it is worth. However, shopping is a basic skill that needs 
to be learned by children with ASD. Shopping trips are a good opportunity to teach your 
child to become more independent. 

· Create a visual shopping list using visual symbols of the list (see example 
below) 
· Involve the child in the selection process. For example, if you are buying a 
dozen apples, have the child select them. Point out if one has a bruise so he 
can learn. 
· Bring handheld toys or action figures to occupy the child. 
· Allow the child to help push the cart once she is older and no longer fits in the 
cart. 


 

 

 

 


 

 

 

 

 

 

 

 

Issues of Faith 

 

For many families, attending religious services is an important part of family life. It is 
intended to be a time of worship and quiet reflection, but when a child with ASD attends, 
it can be anything but quiet. 


Nevertheless, a family’s place of worship can be a source of comfort and support. While 
some families are established within a faith community, others may be new to religious 
life having turned (or returned) to their faith as a source of strength upon the diagnosis 
of their child. Dedicated members of your faith community may be able to assist your 
family in various ways, from offering a listening ear to providing assistance in your 
home. A faith community may provide a comfortable setting for companionship and 
support. 

Including a family member with ASD in religious services and activities may require 
some creative planning. Many religious bodies have programs for people with 
disabilities within their religious communities (see Resources at the end of this section). 
While not autism-specific, these programs may provide a blueprint for personalizing a 
program for your child. 

It may be beneficial to request a meeting with the appropriate leader(s) in the faith 
community to discuss options for including your loved one in religious activities. Ask a 
teacher or service provider who may be of the same religious affiliation to accompany 
you and provide information about the kind of structure and support your child needs. 
This “team” can be a valuable resource. 

Consider all the sensory stimulation during a service, including music, singing, stained 
glass windows, candles, flowers, and incense, which all together may be a lot for your 
child with an ASD to handle. Here are some ideas to help entertain your child: 

 

· Personal stereo with headphones to block out extraneous sounds 
· Coloring books and washable crayons/markers 
· Picture books 
· Stuffed animal or another comfort item 


Some have questioned whether or not it is wise to teach religion to a person on the 
spectrum, the argument being that religion is too abstract to grasp. If your faith is an 
important part of your family tradition, do not be discouraged from seeking an 
appropriate environment for religious training and fellowship. If you are not looking for 
an in-depth religious program, it may still be wise to teach your child about the various 
religions and denominations to which he/she may be exposed. In his/her adult life, 
he/she may receive services from a faith-based organization and should be respectful of 
the caregivers’ beliefs. Likewise, it may be necessary to teach your child strategies for 
politely declining unwanted invitations from religious organizations he/she (or you) does 
not wish to be affiliated with. 

Restaurants 

Eating out can be a fun family excursion as long as you keep some basic strategies in 
mind. Don’t let autism keep you from the activities and places you and your family 
enjoy. 

· Sit in a booth with the child with ASD on the inside to prevent bolting. 
· Have plenty of napkins available. 



· Remove all condiments and drinks from the child’s reach. 
· Have a snack or activity ready for the child when you sit down to occupy her 
until the food arrives. 
· Take walks to the bathroom or arcade games to allow the child to explore the 
restaurant under your supervision. 


Vacations 

 

Family vacations – no matter how longed for – can pose difficult issues. The most 
important thing to remember is to maintain as much of a routine as possible for a child 
with ASD. For example, having your child wake at his normal time, followed by 
breakfast and then watching television as a way to start the day. It is also important to 
keep your child’s sleep schedule the same. 

Creating a travel book may be a good planning device for your child. It can include 
pictures of the kind of transportation you will be using, who you are going to visit, where 
you will sleep, and what you will do or see at your destination. Also, remember to pack 
some of his/her smaller toys that will occupy him/her and remind him/her of home. 

Use your vacation destination as a way to experience new sensory activities, without 
overlooking your child’s fragile nervous system. Textures, sounds, sights, colors, and 
music are just some examples of sensory experiences. Here are some ideas for guiding 
sensory experiences on vacation. 

 

· Going to the beach and playing with sand. 
· Walking through a forest and feeling the different leaves. 
· Exploring a museum, identifying colors and shapes. 


Make sure to take a lot of photographs of the places you visit to make a special memory 
scrapbook once you return home. Collect items from your trip like brochures, postcards, 
rocks, leaves, and other mementos to use in the scrapbook (remember to bring an 
empty coffee can or Ziploc bags to store the nature items). 

Preventing Meltdowns in a Public Place 

 

As any parent knows, when your child (typical or with an ASD) has a meltdown in 
public, it can be embarrassing and frustrating for yourself and other family members. 
Prepare ahead of time for going out in public. You can do this by creating a schedule of 
events, including pictures or drawings to illustrate what will occur and review it with the 
child before the trip. Sometimes you can even prepare a basic schedule on a napkin or 
a piece of paper to help your child understand what is going to happen. You can also 
bring an object that your child finds comfort in, or read a social story about the event 
ahead of time to prepare for the outing. These are just a few suggestions on how you 
can provide some predictability for your child before going into the community. 

 


Handling a Meltdown in a Public Place 

 

Always remember that your child with an ASD does not want to have a meltdown, so be 
patient and compassionate. However, when a meltdown does occur, the child is usually 
in extreme distress and may lose control of her raging emotions. When a meltdown 
does occur, try to remember the following: 

Only move the child if there is an immediate safety concern. Moving the child while 
he is having a full-blown meltdown can be dangerous for you and the child because he 
is unable to process what is happening. 

Do not try to give your child whatever he was asking for before the meltdown to 
stop it. This advice is not to say you should not give in and let the child have his way. It 
is because during the meltdown he is unlikely to be able to respond to the object or 
even process the fact that he has it. 

Step back and do not intervene unless your child asks you to. At this point, your 
job is not to try and calm him down; it is to wait. A child can rarely express his 
immediate needs during a meltdown. 

If there are others close by, move them. Well-meaning people may try to help, but tell 
them very clearly to stay back because their presence will only escalate the situation. 
This is when the autism awareness cards may be helpful (see box below). 

Make sure your own reactions don’t escalate. Try to step back and disconnect 
enough so that you are not caught up in your child’s intense emotions. Try to think 
rationally. 

Try not to take it personally. It hurts when our children are angry and lash out at us, 
but try thinking of it as a symptom of something your child has, not who he is. 

Take this opportunity to step back to observe your child carefully. Pay attention to 
his/her environment to determine if there are triggers – lighting, noise level, etc. 

Do NOT restrain your child. However tempting, restraints may reinforce future 
meltdowns because some children find deep pressure relaxing. It is not only potentially 
dangerous for you and the child, in the long term, restraining is ineffective. THE ONLY 
EXCEPTION is when your child is hurting himself/herself or others, or is in danger. 

When the Child Hits the Parent 

 

There may come a time when your child hits you. First and foremost, do not take it 
personally. Your child is trying to communicate with you and may not be able to do so in 
a functional manner when in a state of distress. The following are important things to 
keep in mind: 

· Your child may not remember he/she did it. 
· Determine if he/she purposely hit you, or was flailing and randomly or 
accidentally hit you. 
· Review what you might have done to inadvertently contribute to your child acting 
out toward you during a meltdown. 



· Decide whether to bring up the hitting after the incident. 
· Make sure your child knows that you forgive him/her when he/she makes a 
mistake, whether intentional or not. 
· Call on your support group to get emotional support and to discharge some of the 
emotions you are feeling, if necessary. 
· When you are of a clear and rested mind, you will need to ask some questions – 
is this an ongoing pattern and do I need to seek help from a behavior 
professional? 
· If you want to make your own autism awareness cards, here is the copy you can 
put on each side of the card. 


 

 

Example of an Autism Awareness Card 

 

 

Side One 

If you are puzzled by my child’s behavior????? It is not boldness or lack of 
discipline!!!!!!!! My child has autism … 

Side Two 

Autism is a life-long neurological disorder that prevents the person from 
understanding what he sees, hears, or otherwise senses. People with autism 
often become confused and respond inappropriately in social situations. Autism 
strikes 1 out of every 150 people. 

 

You can also make a card with the following messages: 

 

Our son has autism, a severe language and behavioral disorder. He sometimes 
becomes confused, disoriented, or upset and may throw temper tantrums or 
scream. We are committed to teaching him how to function in the community 
and would appreciate your patience and understanding. If you would like to learn 
more about autism, please feel free to contact us or the American Autism 
Society (1-800-3Autism). 

 

This young person has autism/Asperger Syndrome. It is a developmental 
disability that affects social and communication skills. People with autism tend 
to behave in an odd and unpredictable way as a result of their disability. Please 
help us by being understanding and showing tolerance. 

 

 


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Preparing Your Child for a Medical Appointment 

 

Not unlike most children, children with ASD are not particularly fond of going to see the 
doctor. The experience can be traumatic because there are many sounds, sights, and 
smells that can seem frightening to them. It is extremely important that before going to a 
physician’s appointment, your child is prepared and provided with an understanding of 
what will take place at the appointment. 

Preparing for the Medical Environment 

 

When initially setting up the appointment, whether for a routine pediatric visit, a dental 
appointment, or a visit to the hospital, mention your child’s diagnosis to be sure it is 
added to the chart, if it is not already included. Ask that it is noted in a prominent spot so 
that all involved will be aware prior to meeting your child. This is meant to benefit your 
child. With proper information, even the initial interaction with the nurse or receptionist 
can set a positive tone for your child’s visit. 

Three to four days prior to your child’s visit, call the office to touch base again. Ask what 
the routine and wait time will most likely be for your child’s appointment. They should be 
able to tell you about transitions and specific steps (such as being weighed, measured 
for height) that will be included in the routine. Confirm that they are aware of your child’s 
diagnosis. Explain your child’s specific characteristics and express any stress triggers 
that might bother him/her. Suggest adaptations that could be made to ensure that the 
transition and actual appointment will proceed quickly and smoothly for everyone. 

Suggestions may include the following: 

· With medical professionals, reviewing the environment with the child in mind 
· Limiting the number of people who will be involved in the child’s care 
· Designating a medical team member as the child’s procedure coach 
· Providing sensory items to help the child self-regulate 
· Preparing the child for surgery or a physician’s appointment according to the 
child’s developmental level, not the child’s chronological level 
· Using visuals to help the child understand what will occur 
· Providing simple, step-by-step information 
· Developing coping techniques that are specific to your child, such as talking 
about the visit ahead of time and looking at pictures of the physician’s office and 
equipment 


If the visit to the hospital is an emergency and advance notice was not given, be sure to 
let the medical team know about your child’s characteristics, needs, stress triggers, and 
sensory preferences as soon as possible. Putting these items in writing prior to arrival 
and bringing them with you will make it easier to convey your child’s needs to the 
medical staff as well as give them a framework for how best to interact with your child in 
this emergency situation. 


Preparing Your Child for the Medical Environment 

 

Tell your child he/she will be making a visit to the doctor or dentist. Do not surprise her 
with this information upon arrival. All children are nervous about a medical visit, but 
giving them information in advance allows them to process, anticipate, and better 
absorb the reality of what will occur around them. It allows them to predict what will 
occur so they are not caught off guard by the flood of new sights and sounds around 
them – a major consideration for children with ASD. 

Giving Information 

 

Information should be given on your child’s level, in the amount and manner in which 
your child can best understand it. If you are able to obtain pictures of the actual office, 
use them. Often major children’s hospitals have online virtual tours with photos 
describing a visit to the hospital, or they allow you to visit the hospital for a tour prior to 
your actual visit. If these options are not available, consult children’s books that depict a 
visit to the doctor, dentist, or hospital. It is important to familiarize your child with titles of 
people, equipment that might be used, the routine of the environment, and steps of the 
actual procedure, if at all possible. 

Create a story specific to your child’s visit. Include details such as: 

· Steps in the routine 
· Making transitions to different rooms 
· Waiting in certain areas 
· Wearing special pajamas during the visit 
· People your child will meet 
· Equipment your child will see 
· Sights, smells, and sounds that your child will encounter 


Add details that make your child’s trip unique such as: 

· Who will accompany him/her 
· What he/she can bring along on the trip 
· What he/she will do when the visit is over 


Ask your child open-ended questions about what he/she is feeling and which steps 
seem hard or easy. Help your child make a plan to be successful, and remind him/her 
that it is okay to ask questions if something comes up he/she does not understand. 
Create a portable, step-by-step visual, such as a photo flipbook or a written schedule of 
each step. Make sure the schedule outlines the details you have discussed and the 
coping techniques chosen by your child to help with the visit. This predictability will give 
your child a sense of control as he/she ventures into an often unsettling encounter. 

Medical Play 

 

In addition to specific information about the encounter, allow your child to play through 
the medical experience. Refer back to the children’s books and provide your child with a 
medical doctor’s kit. Encourage your child to be both the doctor and the patient during 
various play series. Do not interrupt your child even if she engages in hostile or 


aggressive play, unless it is endangering her own or others’ safety. Sit back and 
observe what your child is expressing through words and actions. After the play 
sequence is finished and your child is in a state of attention, talk with her about what 
you observed and directly answer all the questions you can. Give honest information, 
using soft language so as to not frighten your child to provide accurate information. 

Use a Transitional Item 

 

Plan a transitional item that your child can bring to accompany him on his journey. This 
may be a favorite stuffed animal, a blanket, or some special treasure. This item allows 
your child to cling to something he/she is familiar with in the midst of an unfamiliar and 
invasive environment. Create a plan with your child as to who will hold the item during 
various steps in the procedure. The object may have to be out of your child’s hands at 
times, and it is better if this is discussed prior to the moment when your child is being 
asked to release the item. If a plan is in place, your child can be reminded that the item 
will only be out of his/her hands for a few moments and returned during the next step. 

During the Medical Encounter 

 

In addition to all the advance preparation, your child will need you as a coach during the 
actual medical encounter. Encourage him/her to bring along the portable visual you 
created to support him through the visit. Be sure to leave space for flexibility, as the 
medical environment often entails emergencies or unforeseen delays. 

As each step takes place, indicate to your child that it is over by crossing it off or turning 
the page of her special book or visual. Reiterate the decreasing number of steps 
remaining. Remind your child that he/she successfully completed previous steps and 
then guide him/her through the step that is next. For example, “Great job getting 
weighed. You have already finished three steps. You arrived at the doctor’s office, 
waited in the waiting room, and got measured and weighed by the nurse. Now we are 
waiting for the doctor to come in.” 

You can also review previously chosen coping techniques or offer new choices on the 
spot. In the midst of the medical encounter, provide your child with limited choices. For 
example, “While we wait for the doctor to come in, do you want to play ‘I Spy,’ read your 
book, or talk about Star Wars?” Be sure to only offer choices that are available. Coping 
choices may change for different steps because of restrictions of body movement, room 
changes, or the effect of medication. 

Leisure Activities 

 

Leisure activities are something everyone enjoys and looks forward to. To the extent 
possible, children with ASD also need and should participate in leisure activities as 
individuals, in groups of peers, and with their families. By using your child’s interests 
and strengths, encouraging skill building in small steps, and creating a fun and well-
supported environment, leisure activities can be enjoyed by all. 

 


 

Sample Community Activities to Consider for Your Child 

 

Playing on a sports team Playing outdoors 

Visiting the library Visiting a museum 

Scouts Reading 

Religious groups Playing board games 

Going to a birthday party Watching a parade, event or sport 

Camps 

 

The following are some ways to adapt activities and build in support to create success 
for your child, given his/her special needs: 

Provide a framework Prime your child in advance with information that will create a 
visual and prepare him/her for the overall experience. In your description, review items 
such as: 

· The overall environment 


Sounds 

Sights 

Smells 

· The people present 


Names 

Descriptions 

Role or function 

Designated “safe person” such as a counselor, activity leader, etc. 

· The activity taking place 


Rules 

Why he is participating 

Working as a team 

Being an individual 

· Boundaries and rules 


For the activity 

 Social “hidden curriculum” rules the child may not know 

Provide opportunities If your child wants to participate in leisure activities, provide 
the opportunity to do so. You may need to ease him/her into a group function, so 
practice first at home playing one-on-one with your child. Eventually, invite three or four 
children over to play. Provide a structured activity for a predetermined, short length of 
time. As your child develops, transition him/her into a larger group, a bigger arena, or a 
lengthier interaction using increasingly more skills. 

 


For example, if your child wants to play Little League, teach the basic skills one-on-one 
or invite peers to play baseball. Practice throwing, catching, and batting. After your child 
learns the subtle rules of team play and develops basic skills, invite the peers over 
again for a short game. Eventually, your child will be ready to transition into a full Little 
League team. 

If your child wants to participate in non-sport leisure activities, practicing at home can 
also be beneficial. Create a scenario and role-play with your child prior to an actual 
encounter. 

· Pull out shelves of books and a plastic card to pretend you are at the library. 
Review rules of being quiet and how to look for a book. 
· For lunch, create a menu of choices. Present it to your child and ask him/her 
to make a selection. Review table manners, what to do while he/she waits, 
and choice making. 


Encourage your child’s strengths and interests Ask your child in which activities 
he/she wants to participate. Getting consent from your child will increase his/her desire 
to participate. Find avenues to pursue the interests and activities that your child loves 
and in which he/she excels, and then adapt them for his/her level of participation and 
skill. Create leisure activities and social opportunities out of your child’s interest. For 
example, if your child enjoys reading, start a small reading group, having the children 
read a story and complete activities that pertain to the theme. If your child enjoys 
playing a particular game, for example, chess, invite others over and create a chess 
tournament. If your child likes to play baseball, start a small, informal team in your 
neighborhood. 

 

Talk with the leaders Prior to the event or start of a sport season, visit with the 
director, coach, or a parent of a peer to exchange information and create a plan of 
success for your child. Take time to explain your child’s strengths and needs, providing 
information about sensory needs, need for visual supports, stress triggers, and how to 
anticipate and support a potential meltdown. Ask for information about the routine of the 
event, gathering as many details as possible. Also discuss adaptations that would be 
beneficial and determine how they will be incorporated. 

 

Often when a child is starting or encountering a new leisure activity parents participate 
in a leadership role, such as being a coach or facilitating a troop. This allows you to add 
needed support and make accommodations for your child. 

Bullying 

 

Bullying is a pressing issue for many schools. While this damaging behavior affects both 
typical children and children with special needs, children with special needs are at more 
risk for being targets of a bully. Being bullied can cause kids to experience fear and 
anxiety and interfere with school work and self-esteem. 

 


Types of Bullying 

· Physical – hitting, kicking, pushing, etc. 
· Verbal – name calling, teasing 
· Emotional – excluding and ignoring others 
· Sexual – touching, teasing, coercing 
· Cyber bullying – sending threatening emails, text messages, harassing cell 
phone calls, etc. 


 

Because children with ASD have trouble with language and social cues, they can 
become easy targets for bullies. Further, one of the main ways children protect 
themselves from being bullied is to predict the behavior of others and respond 
accordingly. Children with ASD have a very difficult time predicting what others may be 
thinking. For example, a group of students may talk a child with ASD into doing 
something he/she knows is wrong, but he/she may think they are trying to be friends-- 
and not realize what they are doing and comply after all. Students with ASD may also 
mimic what others do, including bullying others, without understanding the 
consequences. They may also try to retaliate. 

The best bullying prevention programs involve the whole community and all staff at your 
school. Children not only need to learn ways to handle a bully, they also need to be able 
to address students who may watch, called bystanders. If your child is reporting 
increased headaches, stomachaches, or other physical problems or complaining about 
going to school more than usual, consider explaining what bullying is and ask if it is 
happening to him/her. 

If your child is being teased, excluded, or harmed repeatedly by schoolmates, take 
action: 

· Ask about school policies, training, and programs for bullying. 
· Ask if there is supervision in hot spots like hallways, lunchrooms, bathrooms, and 
locker rooms. Bullying typically occurs under the radar of adults. 
· Ask if there are classroom discussions about bullying. 
· Look for teachers who are flexible and can help your child feel more alike than 
different. 
· Consider using a social story and/or power cards to help your child know how to 
respond to bullies. 
· If needed, you can address it on the IEP. 


 

 


Useful Forms 

 

The following forms may be helpful and can be printed out for your personal use: 

 

• Developmental Milestones Form 

• Family Health History 

• Emergency Contact Information Form 

• Parent Record-Keeping Worksheet 

• Child/Student Profile 

• Home-School Communication Form 

 

You may want to keep all of your child’s records and official documents in one place. 
You may want to include: 

 

• Birth Certificate 

• Social Security Card 

• Medical/Insurance Card 

• Immunization Record 

• Copies of Evaluations and Assessments 

• Multi-Factored Evaluation (MFE) 

• Copies of IFSPs/IEPs (current and previous) 

• Other school records


Developmental Milestones 

This is a form to record your child’s development. It can help you keep track of 
developmental delays; therefore, it can serve as a reference when visiting the doctor or 
going through the evaluation process. 

 

 

Date of Birth: _______________ Date Completed: ________________ 

 

Weight at Birth: ______________ Length: _______________________ 

 

Complications/Notes:_____________________________________________________
______________________________________________________________________
______________________________________________________________________
__________________ 

 

Age when child was able to: (Represents typical age range) 

1. ______ Hold head up (6 weeks) 

2. ______ Smiles (2 months) 

3. ______ Babbles (3-4 months) 

4. ______ Roll over (4 months) 

5. ______ Reaches for object (4-7 months) 

6. ______ Sits without support (6-7 months) 

7. ______ Crawls (6-7 months) 

8. ______ Drink from cup (6-9 months) 

9. ______ Stands alone (11-12 months) 

10. ______ First word mama, dada (12 months) 

11. ______ Walks alone (12-18 months) 

12. ______ Uses two-word phrases (18 months-2 years) 

13. ______ First tooth (6 months-1 year) 

14. ______ Toilet trained (2-3-½ years) 

 

 

 

 

 

 

 

 

 

 


Family Health History 

This form allows you to track your family’s health history and can serve as 
a reference when completing paperwork in the future. 

Condition 

Yes 

No 

Family 
Member/Relative 

Age 
Began 

Autism Spectrum Disorders 

 

 

 

 

 

Attention Deficit Hyperactivity 
Disorder (ADHD) 

 

 

 

 

 

Obsessive Compulsive Disorder 
(OCD) 

 

 

 

 

 

Anxiety Disorder 

 

 

 

 

 

Bipolar Disorder 

 

 

 

 

 

Schizophrenia 

 

 

 

 

 

Depression 

 

 

 

 

 

Other Psychiatric Disorders: 

 

 

 

 

Other: 

 

 

 

 

 

Other: 

 

 

 

 

 

Other: 

 

 

 

 

 




Emergency Medical Form 

This form is intended to provide basic medical information in case of 
emergency. 

 

Name 

Date of Birth 

Blood Type 

Age 

Eye Color 

Height 

Weight 

Gender 

Allergies 

Address 

City 

State 

Zip 

Home Phone ( ) 

Cell Phone ( ) 

Current Medications 

Medication 

Dosage 

Schedule 

Reason 

Prescribing Physician or 

Over The Counter (OTC) 

Emergency Contact Information 

Emergency Contact Person 

Relation 

Home Address 

City 

State 

Zip 

Daytime Phone ( ) 

Cell Phone ( ) 

Evening Phone ( ) 

Alternative Phone ( ) 

Work Address 

City 

State 

Zip 

Primary Physician Information 

Name of Primary Physician 

Address 

City 

State 

Zip 

Phone ( ) 

Emergency Phone ( ) 

Other Physicians/Specialists 

1. Physician/Specialist 

Reason 

Address 

City 

State 

Zip 

Phone ( ) 

Emergency Phone ( ) 

2. Physician/Specialist 

Reason 

Address 

City 

State 

Zip 

Phone ( ) 

Emergency Phone ( ) 

Other Information 

Disabilities or Other Conditions 

Primary Language 

Primary Method of Communication 

Adaptive Equipment 

Special Notes or Considerations 

Insurance Information 

Insurance Company 

Policy Number 

Primary Subscriber Name 

Group Number 



 

 

 

 

 


Emergency Response Information 

For Individuals with a Disability 

This form may be filled out and provided to the local police or fire and 
rescue departments, either in preparation for possible emergencies or to be 
ready at their arrival at an emergency. 

 

 

Name of Person with Disability 

 

Home Address 

 

Date of Birth 

 

Home Phone 

 

Cell Phone 

 

Work Phone 

 

Emergency Contact Name 

 

Relationship to Person with Disability 

 

Home Phone 

 

Cell Phone 

 

Work Phone 

 

Name and telephone of person’s specialist (doctor or teacher) if emergency contact 
cannot be reached 

 

 

Is the individual able to communicate with speech? 

 

Does the individual understand receptive language (what is being said to him/her)? 
Yes / No If not, describe his/her method of communication 

 

Would the individual be able to communicate his name, address, and telephone number 
in a high stress situation? 

 


Does the individual engage in any unusual behaviors that might seem disrespectful or 
threatening (e.g., yelling, giggling, standing too close to people)? If so, please describe 

 

In a high-anxiety situation, how would the individual most likely communicate? 

 

 

Is the individual prone to respond in an unusual manner to sensory input (sounds, lights, 
smells, etc)? Yes / No 

 

Circle what may result: seizure panic flight fight withdrawal other (please describe) 

 

 

 

What might trigger what is circled above (e.g., dog bark, siren, touch)? 

 

 

Does the individual have any specific fascinations (e.g., tree climbing, water)? If so, 
please describe 

 

Is the individual threatened by any physical traits (e.g., whiskers, hats, uniforms)? If so, 
please describe 

 

 

Does the individual have an accurate sense of danger? 

 

 

Does the individual have any other medical conditions or is he/she taking medication? If 
so, please describe 

 

 

 

Please describe anything else that would be helpful to emergency personnel (police, 
fire, EMT) who may have to respond to your household and interact with the 

 

 

 

 

 

Adapted from Jackson County Sheriff Department, Jackson, MI.


Child/Student Profile 

 

This form can be used to give some basic information about your child to a 
service provider, relative, babysitter, respite worker, or educational 
professional. It may be used as your child transitions from one provider or 
teacher to another. While its format can vary according to your needs and 
preferences, it is helpful to include: 

 

• child’s name 

• child’s disability 

• family dynamics 

• how the child learns best 

• special interests 

• strengths 

• challenges 

• things that upset 

• signs the child is upset 

• calming or soothing techniques 

• motivators and preferences 

• modifications, including curriculum, environmental, organization, 
and social support. 

 

The following is one possible way of organizing this information and has 
been created for your use. The first page is a sample, completed form; the 
following page is blank for your use. 

 

 

 

 

 

Adapted from Judy Marks, personal communication. Used with permission.


EXAMPLE of the Child/Student Profile 

 

Name: Johnnie Date of Birth: Feb 20, 2002 

 

This Is Me: I have autism. This means I have trouble understanding you, and letting you know 
what I want and how I feel. Sometimes it seems like I don’t want to play with you or other kids, 
but I really do, I just don’t always know how! I am very active and love to move all the time. I find 
it hard to try new things or when my routine changes. 

 

My Family: I live with my mommy. She has to work all day so I go to school. I have lots of 
friends that love me and help take care of me at our church. They are kind of like my family 
since my grandma and papa live far away. 

I also go to a social group 2 days every week; there my friends and I learn to play better. 

 

My Strengths: 

• remembering the rules 

• colors, numbers and letters 

• saying Hi to everyone I meet 

 

My Challenges: 

• understanding what adults ask me or tell me to do 

• telling you how I feel and what I want 

• trying something new (food or activity) 

• looking at you when I talk to you 

• playing with other kids 

 

I Learn Best When ... 

• I know what you want from me 

• I know what’s coming next 

• Visuals are used 

 

My Special Interests: 

• Blues Clues 

 

My Motivators and Preferences: Singing, playing in water, Hide and Go Seek (anything that 
lets me move and run around), bubbles, tight hugs, French fries and ketchup, anything else I 
can dip in ketchup. 

 

Things That 

Upset Me: 

 

changes in routine 

stopping Blues Clues 

sitting still 

waiting 

Signs 
I’m 
Upset: 

picking at 
my 
fingers 

laying my 
head 
down 

closing 
my eyes 

How I Calm Down: 

 

a picture of when I get a break or can go back to Blues 
Clues 

 

go for a walk 

get a tight hug 

 

Modifications for Me: Visual schedule, visual prompts, timers, lots of praise and reinforcement, 
breaks to run around during long sitting or waiting activities. 




Name: Date of Birth: 

 

 

This Is Me: 

 

 

 

 

My Family: 

 

 

 

My Challenges: 

 

 

 

My Special 
Interests: 

 

 

 

I Learn Best: 

 

 

 

My Motivators and Preferences: 

 

 

Things That 
Upset Me: 

 

 

Signs I am 
upset: 

 

 

How I calm 
down: 

 

 

 

 

 

 

 

 

Modifications for Me: 

 

 




Home-School Communication Form 

The following is one example of a form that can serve as a way to pass information from home 
to school and back to home. Also included is an issue of Disability Solutions, which offers 
several other excellent examples of such forms, as well as information on how to create 
your own. 

Name:___________________________________________________________ 

Date: __________________ Monday Tuesday Wednesday Thursday Friday 

At home I ... 

_____ Slept all night _____ Did not sleep well _____ Had a good morning 

_____ Ate all of my breakfast _____ Ate some of my breakfast 

_____ Did not eat breakfast _____ Was not feeling well 

Other Comments: 
________________________________________________________________ 

________________________________________________________________ 

________________________________________________________________ 

Today at school I did ... 

_____ Discrete Trial DTT ____ Story Time _____ Table Tasks 

_____ Independent Work _____ Art Activity _____ Reading 

_____ Sensory Play _____ Playground _____ Other 

Comments: ________________________________________________________________ 

________________________________________________________________ 

I mastered _______________________________________________________ 

Today at school I ate ... 

_____ Snack _____ Most of my lunch I had some _____________ 

_____ All my lunch _____ Very little lunch 

Comments: ________________________________________________________________ 

Bathroom routine: _____ I had no accidents today I had _____ accidents today. 

Needed supplies: 
_______________________________________________________________ 
Adapted from: Home-School Communication Form from the Autism M.O.D.E.L. Community School, Great 
Lakes Center for Autism, 1615 Holland Rd, IRN-134122, Maumee, OH 43537, (419) 897-4400. Used with 
permission.