Children with autism are affected by many factors that will shape their future. Overall, the long-term outcomes of children with autism spectrum disorder (ASD) have been improving. In general, the sooner ASD is identified, the sooner appropriate intervention programs can begin.
While some children make significant developmental gains with early and intense intervention, some children may make slow progress depending on their intelligence, the severity of their ASD symptoms, and whether they have associated medical problems such as seizures or significant behavioral disorders.
The goal for all parents should be to help their child reach his or her fullest potential with the help of all available resources.
At some point, all parents compare what their children do against what their cousins’ or their friends’ children do. “Competitive parenting” ― it makes us all feel a little nutty―and it’s very hard to stop.
Are we worrying too much? Too little? What is enough of a reason to worry?Trust your instincts. You know your child best.
If you note that your child is not developing like other children or something just seems off, it is important to talk with a trusted source.
Parents: Talk with Your Child’s Doctor If You Are Worried at Any Time!If at any time you worry that your child isn’t expressing a range of emotions, communicating thoughts, or reflecting an understanding of your language, visual cues, and behavior, talk with your child’s pediatrician. There are screening tools the pediatrician may use to evaluate your concern. You can also complete a free developmental milestone checklist online and share that with your pediatrician. This is an excellent way to communicate your concerns. Read these tips about “How to Talk with the Doctor” for more ideas. Remember, you know your child best and your concerns are important. Together, you and your pediatrician will find the best way to help your child.If you don’t feel heard or you continue to worry, schedule another visit. If you still worry, contact another doctor for a second opinion. Instincts serve us very well when it comes to parenthood.Find some peace of mind if your child is doing many of the behaviors listed below!
Reassuring Developmental Milestones for Infants & Toddlers
In her book, Mama Doc Medicine: Finding Calm and Confidence in Parenting, Child Health, and Work-Life Balance, Dr. Wendy Sue Swanson lists the following as signs that your child is developing great communication skills on time:
Responds to her name between 9 and 12 months of age
Smiles by 2 months of age; laughs and giggles around 4 to 5 months; expresses with eye contact and smiles or laughter to your humor around 6 months
Plays and thinks peek-a-boo is funny around 9 months of age. Share enjoyment with you during this game
Makes eye contact with people during infancy
Tries to say words you say between 12 and 18 months of age
Uses 5 words by 18 months of age
Copies your gestures like pointing, clapping, or waving
Imitates you, i.e., pretends to stir a bowl of pancake mix when you give him a spoon and bowl or pretends to talk on the phone with a play cell phone
Shakes head “no”
Waves bye-bye by 15 months of age
Points to show you something interesting or to get your attention by 18 months of age
Many children with autism spectrum disorder (ASD) show developmental differences when they are babies—especially in their social and language skills. Because they usually sit, crawl, and walk on time, less obvious differences in the development of body gestures, pretend play, and social language often go unnoticed.
In addition to speech/language delays and behavioral differences, families may notice differences in the way their child interacts with peers and others.
Recognizing signs of autism
Here are some examples of social, communication, and behavioral differences in children with autism.
Keep in mind: one child with ASD will not have exactly the same symptoms as another child with ASD. The number and severity of symptoms can vary a lot!
Social differences in children with autism
May not keep eye contact or makes little or no eye contact
Shows no or less response to a parent’s smile or other facial expressions
May not look at objects or events a parent is looking at or pointing to
May not point to objects or events to get a parent to look at them
Less likely to bring objects of personal interest to show to a parent
Many not have appropriate facial expressions
Has difficulty perceiving what others might be thinking or feeling by looking at their facial expressions
Less likely to show concern (empathy) for others
Has difficulty making and keeping friends
Communication differences in children with autism
Less likely to point at things to indicate needs or share things with others
Says no single words by 15 months or 2-word phrases by 24 months
Repeats exactly what others say without understanding the meaning (often called parroting or echoing)
May not respond to name being called but does respond to other sounds (like a car horn or a cat’s meow)
May refers to self as “you” and others as “I” and may mix up pronouns
May show no or less interest in communicating
Less likely to start or continue a conversation
Less likely to use toys or other objects to represent people or real life in pretend play
May have a good rote memory, especially for numbers, letters, songs, TV jingles, or a specific topic
May lose language or other social milestones, usually between the ages of 15 and 24 months (often called regression)
Behavioral differences (repetitive & obsessive behaviors) in children with autism
Rocks, spins, sways, twirls fingers, walks on toes for a long time, or flaps hands (called “stereotypic behavior” or stereotypies)
Likes routines, order, and rituals; has difficulty with change or transition from one activity to another
May be obsessed with a few or unusual activities, doing them repeatedly during the day
Plays with parts of toys instead of the whole toy (e.g., spinning the wheels of a toy truck)
May not cry if in pain or seem to have any fear
May be very sensitive or not sensitive at all to smells, sounds, lights, textures, and touch
May have unusual use of vision or gaze—looks at objects from unusual angles
Parents: trust your instinctsIf you have concerns about how your child plays, learns, speaks, acts, or moves, talk with your pediatrician. Before you go to the appointment, complete a free developmental milestone checklist, and read these tips about “How to Talk with the Doctor.”Remember, you know your child best and your concerns are important. Together, you and your pediatrician will find the best way to help your child. If you’re uneasy about the doctor’s advice, seek a second opinion.Don’t wait. Acting early can make a big difference in your child’s development!
How to distinguish a child with autism from other typically developing children
Here are some examples that may help a parent tell the difference between normal, age-appropriate behavior and early signs of ASD.
At 12 Months
A child with typical development will turn their head when they hear their name.
A child with ASD might not turn to look, even after their name is repeated several times, but will respond to other sounds.
At 18 Months
A child with delayed speech skills will point, gesture, or use facial expressions to make up for their lack of talking.
A child with ASD might make no attempt to compensate for delayed speech or might limit speech to repeating what they hear on TV or what they just heard.
At 24 Months
A child with typical development brings a picture to show their mother and shares their joy from it with her.
A child with ASD might bring their mom bottle of bubbles to open, but they do not look at her face when they do or share in the pleasure of playing together.
Anyone who’s been a parent long enough has felt that panic—often only temporary—when a child wanders out of sight. Kids can get lost anywhere—at an amusement park, in a store, in a crowd, and sometimes even right in your own neighborhood. Many parents of children with autism spectrum disorder (ASD) know this feeling all too well.
The Scope of the Problem:
The first study to quantify the scope of the problem was published in Pediatrics in 2012. Results were significant. Of the 1,218 children with ASD who were studied, almost half of those children had wandered off from home, school, or another safe place at least once after age 4. Many were missing long enough to cause concern, were in danger of drowning, or were at risk of being hurt by traffic.
What Parents Can Do:
There are things parents can do to protect their children with ASD from this very real and scary danger.
Here are tips from the American Academy of Pediatrics:
Know wandering triggers. Children with ASD can be impulsive and typically wander or bolt from a safe setting to get to something of interest, such as water, the park, or train tracks—or to get away from a situation they find stressful or frightening, such as one with loud noises, commotion, or bright lights.
Secure your home—regardless of your child’s age. Shut and lock doors that lead outside. Consider putting alarms on doors to alert you if a door has been opened.
Work on communication and behavior strategies. Teaching your child strategies to self-calm when stressed and appropriately respond to “no” can make a big difference. Make sure your child’s teachers and other family members understand how important it is to keep your child engaged and busy to reduce his or her urge or opportunity to wander.
Set expectations. Before going out in a public place, communicate the plan with your child and other family members—including the timeline and rules to follow. Consider noise-canceling headphones if noise is a trigger, and use the “tag team” approach to make certain your child is always supervised by a trusted adult.
Consider monitoring technology and identification. More than 1/3 of children with ASD who wander are never or rarely able to communicate their name, address, or phone number. It may be helpful to have things like GPS devices, medical alert tags, and even their name marked in clothing. Project Lifesaver and SafetyNet Tracking or other programs may be available through your local law enforcement agencies.
Rest. Children with ASD may be less hyperactive and less likely to wander during the night if they have a sleep management plan and a regular sleep schedule. Caregivers who get enough sleep are also more vigilant. Many children with ASD may have sleep problems. If your child is having problems going to sleep or staying asleep, talk to your pediatrician for further evaluation and treatment.
Drowning is the cause of death for almost 3 in 4 children with autism who wander off alone.Reinforce water and swimming safety. Home swimming pools should be surrounded by a fence that prevents a child from getting to the pool from the house. There is no substitute for at least a four-foot-high, non-climbable, four-sided fence with a self-closing, self-latching gate; some states require at least 5 feet. Pool alarms and door alarms are also protection products that may have some benefits. Note, however, that swimming lessons are not enough to prevent drowning; swimming lessons in wet clothes and shoes could be suggested for children with ASD who tend to wander.The American Academy of Pediatrics (AAP) recommends a family supervision plan for children with ASD and other special needs. Have a checklist of nearby ponds, lakes and pools to search if a child wanders. Download an emergency plan here. To find swim lessons, contact your local parks and recreation facility or YMCA. Many communities have free or low-cost programs. Swim programs are tailored to meet cultural, religious, physical and mental health needs. Local faith-based organizations also can offer suggestions on swim accommodations that meet your family’s beliefs and traditions.Each state also has an affliate organization of Family Voices, a national family-led organization of families of children and youth with special health care needs. They are another resource for finding swim lessons to accomodate your child’s needs.
Worried about Wandering?
Talk with your child’s pediatrician about creating a family wandering emergency plan. The diagnostic code for wandering is Z91.83, which can be used in your visits with medical professionals. Your pediatrician can give you additional strategies that may be helpful in increasing your child’s safety, as well as information about local resources.
Editor’s note: Wandering behavior isn’t unique to children with ASD. A variety of different developmental disorders, such as attention-deficit hyperactivity disorder (ADHD), can also lead to children running off at any given moment. In addition, children with ASD may have other medical problems that may need further evaluation and treatment. These may include seizures, problems with sleep, gastrointestinal problems (feeding problems, abdominal pain, constipation, diarrhea, and behavioral health problems (such as anxiety, ADHD, irritability, and aggression).
When autism spectrum disorder (ASD) is suspected, your child will need a full assessment or evaluation and should be referred for intervention.
A full assessment or evaluation for ASD is needed before arriving at a diagnosis.
Ideally, this is done by a team of professionals and includes includes asking parents and caregivers a number of questions, observing the child, performing a physical examination, and administering various tests.
Intervention for ASD consists of several different things.
First, your child’s pediatrician may prescribe medically necessary therapies such as speech, behavioral, and/or occupational therapy.
If your child is under 3 years old: He or she should also be referred to your state’s Early Intervention (EI) program.
If your child is 3 years old or older: He or she can be evaluated, and likely enrolled, in your local school district’s special education services.
If your child is between 3 and 5 years old: He or she may be eligible to attend a developmental preschool program for children in need of more support. Contact your local school district.
Typically, an evaluation to assess speech/language and social delays can include:Careful observation of play and child-caregiver interactions.Detailed history and physical examination.Review of records of previous early intervention services, school, or other evaluations.Developmental assessment of all skills (motor, language, social, self-help, cognitive). ASD is suspected when the child’s social and language functioning are significantly more impaired than the overall level of motor, adaptive, and cognitive skills.Hearing test. All children with any speech/language delays or those suspected of having ASD should have their hearing formally tested.Language evaluation that provides standardized scores of expressive language (including speech) and receptive language (understanding language), as well as an evaluation of pragmatic language (social use of language) and articulation (pronunciation).
Autism may be associated with a known genetic syndrome or medical condition.
Laboratory tests may be indicated to evaluate for other possible medical conditions that could cause ASD symptoms based on the child’s history and physical examination. If needed, the child may be referred to other specialists, geneticist or a pediatric neurologist, to help diagnose medical conditions that might cause or be associated with symptoms of ASD.
Medical tests may include:
Genetic tests. It is recommended that families be offered genetic testing, such as Chromosomal Microarray (CMA) testing and Fragile X testing. At present, up to 20% of children with ASD have abnormalities of their chromosomes identified using genetic testing. Some studies report up to 25-35% of patients are identified with certain types of genetic tests. Genetic testing should be strongly considered if a child has unusual physical features or developmental delays or if there is a family history of fragile X syndrome, intellectual disability of unknown cause, or other genetic disorders. Other genetic tests may be needed in certain cases. Recommendations for genetic testing may change as new tests are developed.
Lead test. Lead screening is an important component of primary care. A lead level should be performed when a child lives in a high-risk environment, such as older buildings, or continues to put things in his mouth.
Other tests. Based on the child’s medical history and physical examination, an electroencephalogram (EEG), a magnetic resonance imaging (MRI) scan, or tests for metabolic disorders may be ordered. Children with ASD may be picky eaters, so your child’s pediatrician may recommend looking for evidence of iron or vitamin deficiencies (especially vitamin D).
Medical tests not recommended: There is not enough clinical evidence to recommend any of the following tests specifically for ASD:Hair analysisRoutine measurement of multiple vitamin or nutrient levelsIntestinal permeability studiesStool analysisUrinary peptides Measurement of mercury or other heavy metals
Diagnosis of ASD
Diagnosis of ASD is made by using all the information collected by history, observation, and testing.
If you have concerns about your child’s behavior or development, talk with your pediatrician.
Editor’s note: Children with ASD may have other medical problems that may need further evaluation and treatment. These may include seizures, problems with sleep, gastrointestinal problems (feeding problems, abdominal pain, constipation, diarrhea, and behavioral health problems (such as anxiety, ADHD, irritability, and aggression).
It would be so much easier if autism spectrum disorer (ASD) could be diagnosed with a blood test or an x-ray, but it’s not that simple.
A diagnosis of ASD is ultimately made based on your description of your child’s development, plus careful observations of certain behaviors by your pediatrician, autism experts, medical tests, and your child’s history.
Early diagnosis requires a partnership between parents and pediatricians.
Within this partnership you, as the parent, should feel comfortable bringing up any concerns you have about your child’s behavior or development—the way he or she plays, learns, speaks, and acts. Likewise, your child’s pediatrician’s role in the partnership is to listen and act on your concerns.
During your child’s visits, the pediatrician may ask specific questions or complete a questionnaire about your child’s development. Pediatricians take these steps because they understand the value of early diagnosis and intervention and know where to refer you if concerns are identified. The importance of this partnership cannot be stressed enough.
Why ALL children are screened for autism: If your child does have autism, an early diagnosis is better because then your child can start receiving the help he or she needs. This is why the American Academy of Pediatrics (AAP) recommends all children be screened for ASD at their 18- and 24-month well-child checkups. Talk with your doctor if you feel your child needs to be screened (regardless of their age) and share your concerns—you know your child the best!
If your child recieves an autism diagnosis:
Learning your child has a lifelong developmental disability is difficult. Naturally, you as a parent, other caregivers, and extended family need to grieve about this. You will undoubtedly worry about what the future holds.
Keep in mind during these difficult times that most children with ASD will make significant progress in overall function. Some children with ASD can do exceptionally well and may even remain in a regular education classroom. Many will have meaningful relationships with family and peers and achieve a good level of independence as adults.
It is important to remember that while a diagnosis of autism may change what you thought your parenting experience would be, we now know that children with ASD can achieve so much more in life as long as they are given appropriate support and opportunities.
Health insurance, coding & billing questions for ASD: Because the DSM-5 criteria combine all previous subdiagnoses under one condition (ASD), there may be inconsistency between insurance billing databases and DSM-5 diagnoses. Parents, see the Health Insurance section on HealthyChildren.org for helpful articles and information you’ll need on your journey.Both ICD-9-CM and ICD-10-CM contain specific codes for subdiagnoses, including Asperger’s Syndrome. Therefore, it is recommended that services provided for children with ASD are reported with codes such as ICD-9-CM code 299.00 or 299.01. On or after Oct. 1, 2014, report ICD-10-CM code F84.0.
Editor’s note: Children with ASD may have other medical problems that may need further evaluation and treatment. These may include seizures, problems with sleep, gastrointestinal problems (feeding problems, abdominal pain, constipation, diarrhea, and behavioral health problems (such as anxiety, ADHD, irritability, and aggression).
Your child’s pediatric primary health care provider will start screening your baby for signs of developmental or communication challenges like autism spectrum disorder (ASD) at his or her very first well-child visit.
They observe how your baby giggles, looks to you for reassurance, tries to regain your attention during a conversation, points or waves, responds to his or her name, and cries. It is those observations―in combination with family history, health examinations, and parents’ perspectives―that help pediatric primary health care providers identify children at risk for ASD.
ALL children should receive a formalized ASD screening at their 18- and 24-month well-child visits:The American Academy of Pediatrics (AAP) recommends screening all children for ASD at the 18 and 24-month well-child visits in addition to regular developmental surveillance and screening. This type of screening can identify children with significant developmental and behavioral challenges early, when they may benefit most from intervention, as well as those with other developmental difficulties. For screening to be effective, it must be applied to all children – not only those with symptoms.There are multiple different tools your provider can choose to screen for ASD. While the AAP does not endorse any specific ASD screening tool over another, here are some your child’s provider may use:Ages and Stages Questionnaires SE-2 (ASQ-SE2) Pervasive Developmental Disorders Screening Test-II (PDDST-II)Communication and Symbolic Behavior Scales (CSBS)Modified Checklist for Autism in Toddlers – Revised with follow-up (M-CHAT-R/F)The M-CHAT-R/F the most common screening tool used in pediatric offices.It is a 23-point questionnaire filled out by parents. Most families find it easy to fill out. Using this standardized screening tool, pediatricians will be prompted to start conversations about language delays, concerns about behavior, or possible next steps for a child at risk with additional genetic, neurologic, or developmental testing.
Screening isn’t diagnosing!
It’s important to note that screening isn’t diagnosing.
If your child has a positive screen for an ASD, it doesn’t mean he or she will be diagnosed on the spectrum. See If Autism is Suspected, What’s Next?
If your child screens normally but you continue to worry about ASD, don’t be shy. Screening tests are just that—screening—and don’t identify all children with ASD.
The rate of success for the M-CHAT -R/F, for example, is not 100%, so it is used in combination with health and family history to identify children at risk.Your opinions as a parent are irreplaceable and of the most importance.
If you are concerned and your child has not been formally screened:
Talk with your pediatric primary health care provider about doing a formal screening.
But know this: If you are concerned about your child’s communication or behavior due to a family hi story of ASD, the way he or she talks or acts, or other people’s comments about his or her behavior, trust your instincts. Don’t wait to talk with your child’s doctor about doing more. Before you go to the appointment, complete a free developmental milestone checklist, and read these tips about “How to Talk with the Doctor.”
You know your child best and your concerns are important. If the first doctor doesn’t respond to you or take you seriously, get a second opinion.
Don’t wait. Acting early can make a big difference in your child’s development!
We all go through transitions in life. Some of these transitions just happen, like when your infant became an active toddler. Others go more smoothly when we prepare. If you are a parent or caregiver of someone with autism spectrum disorder, preparing them and yourself for the transition to adulthood can be a game-changer. Planning can make the difference between a successful transition or a stressful situation for both the teenager on the autism spectrum and their parent or caregiver.
Here’s what we know:
People on the autism spectrum tend to like predictability. Change can be hard, and transition to adulthood is all about change. It starts happening around age 12 and continue into adulthood: body changes caused by hormones, environment changes with school and healthcare, life skill changes with responsibilities and roles and so much more. Legally things change at 18, too.
What is your role as a parent or caregiver or as an autistic pre-teen/teen?
Start learning the transition steps.
It’s a good idea to start thinking about transition to adulthood at age 12. Transition steps may include healthcare, plans after high school, legal changes after age 18 and daily living plans.
Ask for guidance along the way.
Don’t hesitate to ask your pediatrician for guidance and support. Pediatricians can help you find an adult health care specialist, for example. They can also guide you to local and national resources to help you and your child create plans for the future. GotTransition.org is one example of a trusted resource with information on transition and healthcare.
Stay connected with your child’s pediatrician.
Regular visits with your pediatrician are critical to staying connected with them as a trusted resource. As an expert in children and youth, they can help guide you through the next stages of developing into adult.
Help your child develop their voice.
A critical part of transitioning to adulthood is helping your child develop their voice to advocate for their own health and wellness goals. Work with your pediatrician and your child to build skills to navigate their healthcare like making appointments, filling prescriptions and medical decision making.
Remember
Transition to adulthood is filled with many milestones. Just as when your child transitioned from infant to toddler and the many stages that followed, your pediatrician is a vital partners in this stage of development, too. As a team, autistic youth, parents and caregivers and pediatricians can plan for and achieve successful transitions into adulthood.
Autism spectrum disorder (ASD) is a developmental disability that can affect a child’s social skills, communication, and behavior. Because most children with ASD will sit, crawl, and walk on time, you may not notice delays in social and communication skills right in the first year of life.
Looking back, many parents can recall early differences in interaction and communication.
Children with ASD and their families can be healthy and resilient
More research is needed to understand the course of development for children who are diagnosed with ASD. However, recent studies show that many children with an ASD diagnosis are healthy and doing well in mid-childhood. Some children, while not very common, may progress so much with intervention that they may no longer meet the criteria for a diagnosis of ASD.
How common is ASD?
Approximately 1 in 44 children are diagnosed with ASD by the time they are 8 years old, according to the U.S. Centers for Disease Control and Prevention. Boys are diagnosed with ASD about 4 times more often than girls.
The number of children reported to have ASD has increased since the early 1990s; the increase could be caused by many factors.
Many families are more aware of ASD.
Pediatricians are doing more screening for ASD, as recommended by the American Academy of Pediatrics. Children are identified earlier, which is a good thing.
Schools are more aware, and children are receiving more appropriate special education services.
There have been many changes in how ASD is defined and diagnosed.
Changes in how ASD is defined & diagnosed
Doctors use a book called Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) to assist in diagnosing ASD. In the past, only children with the most severe ASD symptoms were diagnosed. But in 2013, the diagnostic criteria for autism spectrum disorder changed. This was based on the research literature and clinical experience in the 19 years since the DSM-IV was published in 1994. Now, children with milder symptoms are being identified and helped.
Several conditions used to be considered autism spectrum disorders in the DSM. Those conditions were:
With publication of the fifth edition of the DSM in 2013, the terms listed above are no longer used and these conditions are now grouped in the broader category of autism spectrum disorder or ASD. Many people may self-identify as having Asperger Syndrome, but professionals should no longer use this terminology when making a diagnosis.
The benefits of early identification
Each child with ASD has different needs. The sooner ASD is identified, the sooner an early intervention program directed at the child’s symptoms can begin.
The AAP recommends that all children be screened for ASD at their 18- and 24-month well-child checkups. Research shows that starting an intervention program as soon as possible can improve outcomes for many children with ASD.
In addition, children with ASD may have other medical problems that need further evaluation and treatment. These may include seizures, problems with sleep, gastrointestinal problems (feeding problems, abdominal pain, constipation, diarrhea), and behavioral health problems such as anxiety, ADHD, irritability, and aggression. Some of these medical conditions may place children with ASD at increased risk for more severe illness and complications from COVID-19.
COVID-19 & ASD
COVID-19 has impacted all of us throughout the world in many ways. Parents may have been worried about the safety of taking their children to the pediatrician for well-child visits. This may have impacted the frequency and timeliness of screening for autism and other developmental delays. Early identification and entry into early intervention services may have suffered as a result.
Remember to schedule your child’s well-child visit with your pediatrician if you have any concerns about your child’s development or behavior. Talk to you pediatrician about the possibility of conducting these visits virtually if that is your preference.
In addition, school, supports, activities, and routines may have also been disrupted due to the pandemic. Due to school closures and the absence of in-person interaction, teachers may be less able to recognize social and communication differences in their students, thus missing another opportunity for early identification.
Access to school services and therapies has been more difficult for many. And, school closures and virtual learning is a change for all children, but for children with ASD, this change in routine can be very difficult.
During this time of change and uncertainty, it’s even more important to stay connected. Reach out to peer support organizations, such as Family to Family Health Information Centers, for local information specific to children with special health care needs and disabilities.
