A Brief Parent Guide on

Autism Spectrum Disorders (ASD):

Information for Parents
of School-Age Children

Introduction
If you are the parent or caregiver of a school-age child who
has been diagnosed with autism spectrum disorder (ASD),
this booklet is written for you.

Receiving a diagnosis of autism spectrum disorder can be

an overwhelming experience. You may have received other
diagnoses before the ASD diagnosis was made, or this
may be the first diagnosis given to your child. Either way,
an ASD diagnosis can explain some of the differences you
have observed during your child’s development and can also
provide a direction for appropriate interventions at home, in
school, and in the community.

Included in this booklet are questions that parents frequently

ask when their school-age child receives an ASD diagnosis,
and brief answers containing links to resources with more
detailed information.
What is Autism Spectrum Disorder (ASD)? Scientists do not currently have an explanation for the increase
Autism spectrum disorder (ASD) refers to a developmental in the diagnosis, although we do know that public awareness
disability that involves communication, social interaction and has increased. Further, clinicians, researchers, teachers,
behavioral difficulties. The terminology has recently changed, and family members are recognizing the broad spectrum of
so ASD now includes the previous diagnoses of Autistic symptoms present in this disorder. The previous notion that
Disorder, Asperger’s Disorder, and Pervasive Developmental children with ASD do not interact or talk is outdated and has
Disorder-Not Otherwise Specified (PDD-NOS). been replaced by a broader and more inclusive understanding
of the disorder. Consequently, a greater number of children
Children with an ASD diagnosis show difficulties in two main are now identified as having ASD. Clinicians also have
areas: new assessment tools that help them understand a child’s
• social communication and social interaction communication, social interaction abilities, and interests.
• restricted interests and/or repetitive behaviors Finally, although there is no single explanation for this
increase in prevalence, scientists are exploring the potential
Many different symptoms can manifest within each of these role of environmental factors.
areas. Therefore, two children with the same diagnosis can
have different abilities and behave in very different ways. How did my child go so long without a
diagnosis?
The range of ASD symptoms is broad. Within the language Individuals with ASD are diagnosed at all ages, even in
and communication area, some children are nonverbal, adulthood. Sometimes parents notice difficulties with their
some speak in single words or short phrases, while others child’s development but are told that their child “will grow out
have excellent verbal skills. Children’s socialization styles of it” or that it is “just a phase.” In other instances, a child will
may differ as well. Some children have limited social interest receive multiple diagnoses that focus on individual symptoms
and tend to spend much of their time alone, while others before receiving a diagnosis of ASD that encompasses all
are interested in being social but have difficulty doing so aspects of the child’s behaviors.
successfully. Children can also have a wide range of interests
and repetitive behaviors. Some children have interests in Common initial diagnoses include sensory integration
unusual items, such as elevators or street signs, or collecting disorder, developmental delay, speech-language disorder,
unusual objects like pencil erasers. Children may have attention deficit-hyperactivity disorder (ADHD), and obsessive-
interests that are unusual in their intensity and that may or compulsive disorder (OCD).
may not be age appropriate. For example, a child may know
detailed facts about a particular topic or may be interested in Although children with ASD are sometimes not diagnosed
only one toy that is played with exclusively and/or repetitively. until they reach school-age and even adolescence, symptoms
Children may also do repetitive movements with their hands may have been present early in a child’s development. Often,
(e.g., hand flapping) or complex mannerisms with their entire one of the first signs of developmental difficulties is delayed
body (i.e., jumping while flapping). In addition, difficulties with language or a loss of language. However, many children with
transitions or changes in routine and unusual responses to ASD, especially those previously diagnosed with Asperger’s
sensory experiences are common in children with ASD. Disorder, do not have delayed language development. Parents
often report concerns that their child had a difficult time starting
How common are autism spectrum disorders? preschool and playing cooperatively with other children, as
The most recent estimates indicate that 1 out of every 59 well as managing the transitions between activities at school.
children in the United States is diagnosed with ASD. Boys Behavior and attention problems in preschool are commonly
are diagnosed about 4 times more frequently than girls recalled, as are difficulties with fine motor skills, such as
which translates to 1 out of every 38 boys being diagnosed coloring inside the lines and using scissors. Toilet training may
with ASD. These prevalence rates suggest that ASD occurs have also been difficult. Looking back, parents may recall that
more commonly than childhood cancer, juvenile diabetes, and their child did not play like other children. Their child may have
pediatric AIDS combined. (www.cdc.gov/ncbddd/autism/ used toys or objects in a repetitive way without imagination
data.html) or pretend play. Sometimes parents report that their child’s

A Brief Parent Guide on Autism—School-Age Children | Page 2

preschool teacher had to make particular accommodations Are there medical problems that go along with
to help improve behavior and social interaction. With these an ASD diagnosis?
accommodations, their child functioned well and concerns Children who have a diagnosis of ASD should be evaluated
were not noticed until their child was in an environment without by a physician who has expertise in the medical management
these particular supports. of autism spectrum disorder. It is not uncommon for children
with ASD to experience medical problems, such as sleeping
Children may have received interventions to help improve skills difficulties, GI symptoms (e.g., constipation, reflux, and
in specific areas (e.g., speech-language services, occupational diarrhea), feeding issues, or seizures. Often, treating these
therapy), but the overall reason for their difficulties may not be symptoms can result in improvements in behavior because
identified until much later by someone who is familiar with ASD the child is feeling better and is more likely to pay attention to
and makes a referral to an appropriate provider. As parents, school instruction or therapeutic interventions.
educational professionals, medical providers, and therapists
become more familiar with the characteristics of ASD, children Does my child need medication?
can be identified at much younger ages so interventions can No pill can “cure” autism. Rather, medications for children
begin sooner rather than later. with ASD target specific symptoms, such as aggression,
attention difficulties, obsessive-compulsive behaviors,
What other behaviors are common in children anxiety, or depression. Not all children with ASD need
with autism spectrum disorders? medication. However, many children have benefited from the
Children who are diagnosed with ASD show difficulties in two use of medications to manage behavioral and psychological
main areas: social communication and social interaction, and difficulties. Finding a professional with whom you can talk
restricted interests and/or repetitive behaviors. This second about the benefits and risks of medication for your child will be
area includes sensory interests (e.g., seeking out textures helpful. Children with ASD do not always respond in a typical
to feel, smelling objects that are not typically smelled) and manner to medications, so having your child evaluated by a
sensory aversions (e.g., covering ears in response to loud medical doctor who understands this diagnosis is important.
noises such as a vacuum cleaner, blender, or toilet flushing;
refusing to wear certain types of clothing). Children also My child also has significant attention
tend to show motor difficulties with some gross motor skills problems. Is a separate diagnosis of Attention
(e.g., running, skipping, catching a ball) and with some fine Deficit-Hyperactivity Disorder (ADHD) needed?
motor skills (e.g., handwriting, buttoning a shirt, using eating Attention problems are common in children with ASD, so a
utensils). Many children with ASD also have attention and separate diagnosis of ADHD is not required. However, since
learning difficulties that interfere with performance in the many children receive this diagnosis before they receive a
classroom and prevent them from functioning at their highest diagnosis of autism spectrum disorder, ADHD often remains
potential. It is not uncommon for children to have received a in children’s medical files and educational plans. Further,
diagnosis of attention deficit-hyperactivity disorder (ADHD) prescribing physicians may use this diagnosis to describe the
prior to their ASD diagnosis. symptoms for which they are treating your child.

Is there a genetic test for autism spectrum My child also has emotional problems. What
disorders? should I do?
No genetic test is currently available to determine if your A large number of children with ASD experience emotional
child has an ASD. Many research studies are looking into the difficulties such as anxiety, depression, anger, and mood
genetics of ASD, but no single gene or group of genes has been swings. Often, these symptoms increase in intensity when
identified as causing ASD. However, some genetic disorders children are under stress or overwhelmed in a particular
(such as Fragile X syndrome) are associated with a diagnosis environment. Sources of stress can include being frustrated in
of ASD. Talking with your medical provider can help determine a classroom due to an increased amount of verbal instruction,
what genetic testing, if any, should be completed to rule out an excessive noise, or a change in routine. Stress also increases
associated genetic condition. If a specific syndrome is found, due to difficulties with social interactions and understanding the
this information can help you plan for medical interventions often unspoken and complex social banter that exists among
and make future family planning decisions. peers. Emotional symptoms may arise from inadequate social

A Brief Parent Guide on Autism—School-Age Children | Page 3

skills, being bullied, being teased, or recognizing that they are verbal directions into a sequence of pictures that children
“different” than peers. Children with ASD tend to be socially can refer to each time they complete an activity rather than
naïve and emotionally immature, and they may struggle relying on a large amount of fleeting words. Visual supports
to interpret and comprehend the complex social world of also make communication more concrete. For example, if you
their peers. Children and adolescents may also experience say, “Clean your room,” your child might not understand what
symptoms of depression or anxiety when they realize that they to do or remember what steps are involved. Instead, place a
have problems adjusting their social behaviors to “fit in.” series of pictures on the wall that indicate what to do to clean
the room—pictures of a bed that has been made, clothes
Behavioral techniques can help children understand, hanging neatly in the closet, and toys in their appropriate
anticipate, and cope with emotional symptoms. In some cases, place. If your child can read, written visual supports may be
psychological intervention with both the child and family is more appropriate than pictures. Visual supports can be used
useful to develop a plan with specific intervention strategies in a variety of contexts, tailored to each child’s developmental
that build on the child’s strengths and promote self-esteem. level.
Intervention strategies can be incorporated into the home
environment, school setting, and/or extra-curricular activities What are common interventions for children
and can include peers and adults to help implement the with ASD?
interventions. Additionally, you may want to speak with One of the most important aspects of an intervention program
your child’s medical provider to determine if medication is is that it is tailored to meet your child’s and family’s individual
appropriate. needs. Much more important than the name of the program(s)
are how the environment is structured and what educational
My child has difficulty with motor skills. What strategies are implemented to meet your child’s and your
should I do? family’s goals.
While motor difficulties are not required for a diagnosis, it is
common for children with ASD to have delays in both gross Many times, several providers work with a child who has
and fine motor skills. Difficulties in these skills often appear ASD, including speech-language pathologists, occupational
in everyday activities, such as holding utensils, getting therapists, physical therapists, and behavioral therapists.
dressed, brushing teeth, tying shoes, running smoothly, and These services can be provided in a child’s school after an
riding a bicycle. To improve skills in these areas, children evaluation is completed to determine if the child is eligible for
frequently benefit from physical and occupational therapies the specific service(s). Families also may choose to pursue
that are designed to strengthen muscles and improve daily these services independently with private practitioners in
living activities. Children with ASD can greatly benefit from the community. Maintaining close contact with your child’s
occupational and physical therapies but may also have providers so that similar strategies can be used in all
persistent difficulties despite consistent intervention. environments (e.g., home, school, therapy) will help your child
generalize the skills being learned to multiple settings. Your
Why do I have to remind my child each day child may not need services from all of the providers listed
how to do familiar things? below, but their roles are briefly described along with links to
Parents of children with ASD often report that they tell their their professional organization websites, in case you would
child how to complete certain activities each day, and that their like additional information.
child has difficulty completing the tasks without prompting. It
is important to remember that children with ASD, even those Speech-language pathologists (SLPs) are trained in the
who have excellent language abilities, can have a difficult time assessment, treatment, and prevention of communication
processing and retaining large amounts of verbal information. disorders. Typically, they assess and treat difficulties
in language understanding and expression, as well as
In order to help children learn and retain how to complete problems with speech, such as articulation and fluency. Since
multi-step processes, parents can use a series of pictures, communication is an area of significant difficulty for children
often referred to as visual supports, to represent each step of with autism spectrum disorder, SLPs are often crucial members
the instructions. Visual supports help children by translating of the intervention team. In addition to helping with functional

A Brief Parent Guide on Autism—School-Age Children | Page 4

communication skills and addressing speech difficulties, SLPs unwanted behaviors. ABA includes many approaches, but
can help with the pragmatic (i.e., social) aspects of language. they all work on the same basic behavioral principles. For
Children often benefit from learning appropriate conversation school-age children, many of the behavioral principles focus
starters and endings, as well as strategies to help them hold on improving social skills, managing unexpected transitions,
a conversation on a variety of topics. For more information, and implementing reinforcement systems to target specific
see the American Speech and Hearing Association website at behavioral problems at home, in school, and in settings where
www.asha.org. they play and interact with other people.

Occupational Therapists (OTs) typically focus on helping Your child’s behavior therapist should be aware of your child’s
children develop fine motor skills (e.g., handwriting, buttoning, Individual Education Program (IEP) goals and keep records
hooking, closing zippers), process information from their to track the progress being made. This therapist can assist
senses, and carry out daily living activities (e.g., eating, in determining future intervention goals based on ongoing
dressing, grooming). Difficulties with fine motor skills and assessments of your child’s progress. For more information
sensory issues can impact a child’s behavior and functioning in about ABA and other treatment approaches, see the Behavior
the classroom environment. Children can experience increased Analyst Certification Board website at www.bacb.com.
frustration with handwriting, even on short assignments. Or,
they may become agitated by too much sensory input or be What is adaptive behavior?
inattentive as a result of too little sensory input. Interventions Adaptive behavior is the set of skills that helps each
designed by an occupational therapist specially trained in person function in everyday life. These skills can include
strategies to address sensory issues can help manage and an individual’s way of communicating, ability to make and
improve a child’s functioning due to these difficulties. For more maintain social relationships (e.g., initiating interactions with
information, see the American Occupational Therapy website others, taking turns, sharing), personal hygiene (e.g., bathing
at www.aota.org. and getting dressed independently), ability to complete
domestic activities (e.g., helping with chores and cooking,
Physical Therapists (PTs) are trained to treat problems with putting personal belongings away, understanding money and
movements and posture. In contrast to OTs, they tend to focus time), coping strategies (e.g., managing transitions) and motor
on developing gross motor skills (i.e., movements that involve abilities (e.g., riding a bicycle, throwing and catching a ball).
the muscles of the body, arms and legs). PTs can help children Learning to function in everyday life is an important part of
with ASD who have difficulties with coordination, balance, or gaining independence. Delays in a child’s adaptive functioning
motor planning move about their environment and participate can help provide valuable information about potential areas
more effectively in play and recreational activities. For more for intervention.
information, see the American Physical Therapy Association
website at: www.apta.org. It is important to note that adaptive behavior is not the same
thing as intelligence. Scores on an adaptive behavior measure
Behavior Therapists vary in their training backgrounds. can be quite different from scores on an intelligence test. It
Some will have certification through the Behavior Analyst is not uncommon to see a child who has a diagnosis of ASD
Certification Board (BACB) and will have the designation of with average to above average scores on an intelligence test,
being a Board Certified Behavior Analyst (BCBA). Whether but scores in the impaired range on a measure of adaptive
you are trying to locate a behavior therapist through the school behavior. This discrepancy indicates that a child who is bright
system or a private organization, it is important to find out and has the ability to function at an age-appropriate level
their educational background and whether or not they have in problem-solving can actually be behind in skills that are
experience working with children with ASD. required for daily living and gaining independence.

Behavior therapists likely will implement a therapy called Why is my child, who was previously an
Applied Behavior Analysis (ABA). Applied behavior analysis excellent student, starting to have difficulties
is an organized approach that teaches children new skills with in school?
positive reinforcement and rewards, while also decreasing A child may begin having difficulties in school for many

A Brief Parent Guide on Autism—School-Age Children | Page 5

reasons. Your child may have a learning disability. The school support services to parents of children eligible to receive
can assess your child to determine if a learning disability (e.g., special education services. This includes children with ASD
reading disorder) is preventing your child from succeeding from infancy through age 22 years. Services are free of charge
academically. Another common reason that children with to parents. For more information, contact STEP at 1-800-280-
ASD start having difficulties is that school work becomes STEP or www.tnstep.org.
more focused on abstract concepts rather than concrete
information in more advanced grades. As children progress Will my child grow out of the ASD diagnosis?
in elementary school, they are expected to read and learn A diagnosis of ASD means that behaviors consistent with
increasingly complex information. Further, they are asked this diagnosis were present early in development and will
questions that include providing information that is inferred continue to be present throughout a person’s life. However,
rather than stated in the reading. For example, questions like with intervention, symptoms can improve over time. There
“What is the main idea?” or “What will probably happen next?” have been reports of children losing their diagnosis, but
are difficult for children with ASD because the answers are not these cases are the exception rather the norm. In the event
factual, but are based on comprehension of the material on a that a child does lose the diagnosis, it is not uncommon for
more abstract level. The same is true for mathematical skills. the problems previously experienced to persist, just in a less
Children with ASD often do well with math facts, but struggle impairing manner.
with word problems or higher level mathematic concepts such
as algebra. How do I tell my child about the ASD
diagnosis?
These difficulties may seem counterintuitive to parents since How you tell your child about the ASD diagnosis is a
many children with ASD have a vast wealth of knowledge personal decision. There is no single right way to give your
on certain academic topics, such as history or astronomy. child this information, but it is important to talk to your child
However, this kind of knowledge may be based on memorized about the diagnosis. As some children with ASD get older,
facts rather than a conceptual understanding of the material. they may become aware that they are different from their
peers. Recognizing these differences and understanding
What is an IEP and how can it help my child in their diagnosis may help children understand why they have
school? difficulties in some areas but have strengths in others. Most
An IEP is an Individualized Education Program for children 3 important, when you talk to your child about the diagnosis,
years of age and older. An IEP provides your child individualized remember to present the information at the appropriate
intervention services through the public education system. developmental level, so that it is understood, and provide
Your child’s school will determine eligibility for an IEP. This the opportunity for your child to ask questions. Books written
decision is based on eligibility guidelines put forth by the for parents and children about this topic may be helpful. The
Tennessee Department of Education, which are outlined in a Autism Society of North Carolina has an excellent bookstore
document found at: sites.ed.gov/idea/regs/b/d/300.324 with titles that address this topic (autismbookstore.com/).

Parents are an important part of the IEP process. You will What resources are available to learn more
be invited to a meeting to talk about your child and to help about my child’s diagnosis?
develop the IEP. The IEP will focus on your child’s educational Many online resources provide information related to ASD. It
needs and will outline the supports or services needed, how is important to be a careful consumer and obtain information
frequently these services will be provided, and how progress from reliable sources, some of which are listed below. Be wary
will be measured. Often children with ASD benefit from special of websites or treatments that promise a cure or seem too good
education services including speech, occupational, and to be true. In Tennessee, Tennessee Disability Pathfinder, a
physical therapies, as well as classroom accommodations statewide helpline with multilingual staff, keeps an updated
such as help with transitions and modifications to school work. list of autism-related resources. See www.familypathfinder.
In Tennessee, STEP (Support and Training for Exceptional org or call 1-800-640-4636 to find resources in your county
Parents) is a statewide, family-to-family program that supports or region.
families by providing free information, advocacy, training, and

A Brief Parent Guide on Autism—School-Age Children | Page 6

Pathfinder provides information about parent support to resources organized by specific topics: ABA/educational
resources, such as the local chapters of the Autism Society programs, advocacy, behavior resources, occupational
of America (ASA) www.autism-society.org, which provides therapy, speech therapy, and parent training. It also has
information, support, and advocacy for the autism community: the largest autism-specific lending library in Tennessee.
Additionally, the site links to the online bookstore of the Autism
Autism Tennessee Society of North Carolina, which has the largest nonprofit
www.autismtn.org, 615-385-2077 ASD-specific selection of books. Autism Tennessee can be
support@autismtn.org contacted by phone at 615-385-2077.

Autism Resources of the Mid-South What can I expect for the future?
www.autismresourcesmidsouth.org, 901-509-3027 Even with a new diagnosis of ASD, you may already have
autismresourcesmidsouth@gmail.com questions about your child’s future. Will my child be able to go
to college, hold a job, or have a family? These questions are
Autism Society of East Tennessee normal but can be anxiety-provoking because there are no
www.asaetc.org, 865-247-5082 ready answers. If possible, try not to look too far ahead right
info@asaetc.org now. Instead, focus on meeting your child’s current needs
and finding joy in your family’s interactions. It is encouraging
Another resource is Autism Speaks (www.autismspeaks. that we live in a time when energy and resources are being
org/), which has information about diagnosis, treatment, and devoted to better understanding and treating ASD. Our hope
community resources, as well as recent updates from the is that new discoveries will result in more effective treatments
scientific community. that will help your child live a happy, productive life.

What else should I do? Vanderbilt University Medical Center (VUMC)

Develop your own personal team of allies for support. Resources
Parenting is often challenging, and we usually do not receive The Vanderbilt Kennedy Center Treatment and Research
adequate preparation even for raising a child who has typical Institute for Autism Spectrum Disorders—TRIAD—provides
development. When you have a child with a developmental services to children and families; provides exemplary training
disability like an ASD, parenting becomes even more to parents, service providers, and future professionals; and
complicated. Assembling a group of people you can trust conducts state-of-the-art research on understanding and
and rely upon is very important. You may want to develop a treating ASD.
longstanding relationship with a professional (e.g., medical
doctor, psychologist, social worker, therapist) who can monitor Vanderbilt University is a member of the Autism Treatment
your child’s development over time and answer your questions Network (ATN), a network of 14 centers in North America
as they arise. supported by Autism Speaks. The ATN is dedicated to
improving medical care for children and adolescents with ASD
You will be better able to meet your child’s needs if you take by offering comprehensive diagnosis, treatment, care and
care of yourself. Find parent support groups. Spend enjoyable counseling.
time with your other children or family members. Seek
support in your faith community. If you are feeling so sad or For questions about diagnostic, medical, early intervention,
overwhelmed that you feel hopeless or paralyzed, seek help educational, and behavioral resources at VUMC and in the
from a counselor or therapist. community:

Talking with other parents who have children with ASD can be Vanderbilt Autism Resource Line
invaluable. A helpful resource with a well-organized website triad.vumc.org/autismline
is Autism Tennessee autismtn.org. It provides a wealth of Toll free: 1-877-273-8862 or local: 615-322-7565
information about bimonthly autism orientations, monthly Email: autismresources@vumc.org
workshops, conferences, local support groups, as well as links

A Brief Parent Guide on Autism—School-Age Children | Page 7

This publication was written by Courtney Burnette, Ph.D., a former Assistant Professor of Pediatrics
and Psychiatry, Vanderbilt University School of Medicine, who served on the faculty of the Vanderbilt
LEND Training Program. It was revised in June 2017, by Evon Batey Lee, Ph.D., Associate Professor
of Pediatrics, Psychology and Psychiatry, Vanderbilt University School of Medicine, Associate Director
of the Vanderbilt Consortium LEND. It was edited, designed, and produced by the Dissemination
and Graphics staff of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities
(UCEDD) with the support of the Leadership Education in Neurodevelopmental Disabilities (LEND)
Training Program. We are grateful for review and suggestions by many, including faculty of the VKC
Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) and members of Autism
Tennessee.

This publication may be distributed as is or, at no cost. View more printable resources and materials
online at: vkc.vumc.org.

This publication was supported the Health Resources and Services Administration (HRSA) of the U.S. Department of
Health and Human Services (HHS) under grant #T73MC30767 Vanderbilt Leadership Education in Neurodevelopmental
and Related Disabilities (LEND). This information or content and conclusions are those of the author and should not
be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S.
Government. Revised October 2018