A PARENT’S GUIDE TO AUTISM SPECTRUM DISORDER A PARENT’S GUIDE TO AUTISM SPECTRUM DISORDER
NATIONAL INSTITUTE OF MENTAL DISORDERS
What is autism spectrum disorder (ASD)?
Autism spectrum disorder (ASD) is characterized by:
Persistent deficits in social communication and social interaction across multiple contexts; Restricted, repetitive patterns of behavior, interests, or activities; Symptoms must be present in the early developmental period (typically recognized in the first two years of life); and, Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have. Some children are mildly impaired by their symptoms, while others are severely disabled. The latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) no longer includes Asperger’s syndrome; the characteristics of Asperger’s syndrome are included within the broader category of ASD.
Information on ASD can also be found on the Eunice Kennedy Shriver National Institute of Child Health and Human Development website and the Centers for Disease Control and Prevention website.
What are the symptoms of ASD?
Symptoms of autism spectrum disorder (ASD) vary from one child to the next, but in general, they fall into three areas:
Social impairment Communication difficulties Repetitive and stereotyped behaviors.
Children with ASD do not follow typical patterns when developing social and communication skills. Parents are usually the first to notice unusual behaviors in their child. Often, certain behaviors become more noticeable when comparing children of the same age.
In some cases, babies with ASD may seem different very early in their development. Even before their first birthday, some babies become overly focused on certain objects, rarely make eye contact, and fail to engage in typical back-and-forth play and babbling with their parents. Other children may develop normally until the second or even third year of life, but then start to lose interest in others and become silent, withdrawn, or indifferent to social signals. Loss or reversal of normal development is called regression and occurs in some children with ASD.2
Most children with ASD have trouble engaging in everyday social interactions. According to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition – Text Revision, some children with ASD may:
Make little eye contact Tend to look and listen less to people in their environment or fail to respond to other people Do not readily seek to share their enjoyment of toys or activities by pointing or showing things to others Respond unusually when others show anger, distress, or affection.
Recent research suggests that children with ASD do not respond to emotional cues in human social interactions because they may not pay attention to the social cues that others typically notice. For example, one study found that children with ASD focus on the mouth of the person speaking to them instead of on the eyes, which is where children with typical development tend to focus.3 A related study showed that children with ASD appear to be drawn to repetitive movements linked to a sound, such as hand-clapping during a game of pat-a-cake.4 More research is needed to confirm these findings, but such studies suggest that children with ASD may misread or not notice subtle social cues—a smile, a wink, or a grimace—that could help them understand social relationships and interactions. For these children, a question such as, "Can you wait a minute?" always means the same thing, whether the speaker is joking, asking a real question, or issuing a firm request. Without the ability to interpret another person’s tone of voice as well as gestures, facial expressions, and other nonverbal communications, children with ASD may not properly respond.
Likewise, it can be hard for others to understand the body language of children with ASD. Their facial expressions, movements, and gestures are often vague or do not match what they are saying. Their tone of voice may not reflect their actual feelings either. Many older children with ASD speak with an unusual tone of voice and may sound sing-song or flat and robotlike.1
Children with ASD also may have trouble understanding another person’s point of view. For example, by school age, most children understand that other people have different information, feelings, and goals than they have. Children with ASD may lack this understanding, leaving them unable to predict or understand other people’s actions.
According to the American Academy of Pediatrics’ developmental milestones, by the first birthday, typical toddlers can say one or two words, turn when they hear their name, and point when they want a toy. When offered something they do not want, toddlers make it clear with words, gestures, or facial expressions that the answer is "no."
For children with ASD, reaching such milestones may not be so straightforward. For example, some children with autism may:
Fail or be slow to respond to their name or other verbal attempts to gain their attention Fail or be slow to develop gestures, such as pointing and showing things to others Coo and babble in the first year of life, but then stop doing so Develop language at a delayed pace Learn to communicate using pictures or their own sign language Speak only in single words or repeat certain phrases over and over, seeming unable to combine words into meaningful sentences Repeat words or phrases that they hear, a condition called echolalia Use words that seem odd, out of place, or have a special meaning known only to those familiar with the child’s way of communicating.
Even children with ASD who have relatively good language skills often have difficulties with the back and forth of conversations. For example, because they find it difficult to understand and react to social cues, children with Asperger syndrome often talk at length about a favorite subject, but they won’t allow anyone else a chance to respond or notice when others react indifferently.1
Children with ASD who have not yet developed meaningful gestures or language may simply scream or grab or otherwise act out until they are taught better ways to express their needs. As these children grow up, they can become aware of their difficulty in understanding others and in being understood. This awareness may cause them to become anxious or depressed. For more information on mental health issues in children with ASD, see the section: What are some other conditions that children with ASD may have?
Repetitive and stereotyped behaviors
Children with ASD often have repetitive motions or unusual behaviors. These behaviors may be extreme and very noticeable, or they can be mild and discreet. For example, some children may repeatedly flap their arms or walk in specific patterns, while others may subtly move their fingers by their eyes in what looks to be a gesture. These repetitive actions are sometimes called "stereotypy" or "stereotyped behaviors."
Children with ASD also tend to have overly focused interests. Children with ASD may become fascinated with moving objects or parts of objects, like the wheels on a moving car. They might spend a long time lining up toys in a certain way, rather than playing with them. They may also become very upset if someone accidentally moves one of the toys. Repetitive behavior can also take the form of a persistent, intense preoccupation.1 For example, they might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Children with ASD often have great interest in numbers, symbols, or science topics.
While children with ASD often do best with routine in their daily activities and surroundings, inflexibility may often be extreme and cause serious difficulties. They may insist on eating the same exact meals every day or taking the same exact route to school. A slight change in a specific routine can be extremely upsetting.1 Some children may even have emotional outbursts, especially when feeling angry or frustrated or when placed in a new or stimulating environment.
No two children express exactly the same types and severity of symptoms. In fact, many typically developing children occasionally display some of the behaviors common to children with ASD. However, if you notice your child has several ASD-related symptoms, have your child screened and evaluated by a health professional experienced with ASD.
Rett syndrome and childhood disintegrative disorder (CDD) are two very rare forms of ASD that include a regression in development. Only 1 of every 10,000 to 22,000 girls has Rett syndrome.5,6 Even rarer, only 1 or 2 out of 100,000 children with ASD have CDD.7
Unlike other forms of ASD, Rett syndrome mostly affects girls. In general, children with Rett syndrome develop normally for 6–18 months before regression and autism-like symptoms begin to appear. Children with Rett syndrome may also have difficulties with coordination, movement, and speech. Physical, occupational, and speech therapy can help, but no specific treatment for Rett syndrome is available yet.
With funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, scientists have discovered that a mutation in the sequence of a single gene is linked to most cases of Rett syndrome.8 This discovery may help scientists find ways to slow or stop the progress of the disorder. It may also improve doctors’ ability to diagnose and treat children with Rett syndrome earlier, improving their overall quality of life.
CDD affects very few children, which makes it hard for researchers to learn about the disease. Symptoms of CDD may appear by age 2, but the average age of onset is between age 3 and 4. Until this time, children with CDD usually have age-appropriate communication and social skills. The long period of normal development before regression helps to set CDD apart from Rett syndrome. CDD may affect boys more often than girls.9
Children with CDD experience severe, wide-ranging and obvious loss of previously-obtained motor, language, and social skills.10 The loss of such skills as vocabulary is more dramatic in CDD than in classic autism.11 Other symptoms of CDD include loss of bowel and bladder control.1
How is ASD diagnosed?
ASD diagnosis is often a two-stage process. The first stage involves general developmental screening during well-child checkups with a pediatrician or an early childhood health care provider. Children who show some developmental problems are referred for additional evaluation. The second stage involves a thorough evaluation by a team of doctors and other health professionals with a wide range of specialities.12 At this stage, a child may be diagnosed as having autism or another developmental disorder.
Children with autism spectrum disorder (ASD) can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.12,13
Many people—including pediatricians, family doctors, teachers, and parents—may minimize signs of ASD at first, believing that children will "catch up" with their peers. While you may be concerned about labeling your young child with ASD, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with ASD. Early intervention may also improve your child’s IQ, language, and everyday functional skills, also called adaptive behavior.14
A well-child checkup should include a developmental screening test, with specific ASD screening at 18 and 24 months as recommended by the American Academy of Pediatrics.14 Screening for ASD is not the same as diagnosing ASD. Screening instruments are used as a first step to tell the doctor whether a child needs more testing. If your child’s pediatrician does not routinely screen your child for ASD, ask that it be done.
For parents, your own experiences and concerns about your child’s development will be very important in the screening process. Keep your own notes about your child’s development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when your child reached certain developmental milestones.
Types of ASD screening instruments
Sometimes the doctor will ask parents questions about the child’s symptoms to screen for ASD. Other screening instruments combine information from parents with the doctor’s own observations of the child. Examples of screening instruments for toddlers and preschoolers include:
Checklist of Autism in Toddlers (CHAT) Modified Checklist for Autism in Toddlers (M-CHAT) Screening Tool for Autism in Two-Year-Olds (STAT) Social Communication Questionnaire (SCQ) Communication and Symbolic Behavior Scales (CSBS).
To screen for mild ASD or Asperger syndrome in older children, the doctor may rely on different screening instruments, such as:
Autism Spectrum Screening Questionnaire (ASSQ) Australian Scale for Asperger’s Syndrome (ASAS) Childhood Asperger Syndrome Test (CAST).
Some helpful resources on ASD screening include the Center for Disease Control and Prevention’s General Developmental Screening tools and ASD Specific Screening tools on their website.
Comprehensive diagnostic evaluation
The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your child’s symptoms. For more information, see the section: What are some other conditions that children with ASD may have?
A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing ASD may do this evaluation. The evaluation may assess the child’s cognitive level (thinking skills), language level, and adaptive behavior (age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting).
Because ASD is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing.12 Children with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.
Although children can lose their hearing along with developing ASD, common ASD symptoms (such as not turning to face a person calling their name) can also make it seem that children cannot hear when in fact they can. If a child is not responding to speech, especially to his or her name, it’s important for the doctor to test whether a child has hearing loss.
The evaluation process is a good time for parents and caregivers to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your child. Be sure to ask who you can contact with follow-up questions.
What are some other conditions that children with ASD may have? Sensory problems
Many children with autism spectrum disorder (ASD) either overreact or underreact to certain sights, sounds, smells, textures, and tastes. For example, some may:
Dislike or show discomfort from a light touch or the feel of clothes on their skin Experience pain from certain sounds, like a vacuum cleaner, a ringing telephone, or a sudden storm; sometimes they will cover their ears and scream Have no reaction to intense cold or pain.
Researchers are trying to determine if these unusual reactions are related to differences in integrating multiple types of information from the senses.
Children with ASD tend to have problems falling asleep or staying asleep, or have other sleep problems.15 These problems make it harder for them to pay attention, reduce their ability to function, and lead to poor behavior. In addition, parents of children with ASD and sleep problems tend to report greater family stress and poorer overall health among themselves.
Fortunately, sleep problems can often be treated with changes in behavior, such as following a sleep schedule or creating a bedtime routine. Some children may sleep better using medications such as melatonin, which is a hormone that helps regulate the body’s sleep-wake cycle. Like any medication, melatonin can have unwanted side effects. Talk to your child’s doctor about possible risks and benefits before giving your child melatonin. Treating sleep problems in children with ASD may improve the child’s overall behavior and functioning, as well as relieve family stress.16
Many children with ASD have some degree of intellectual disability. When tested, some areas of ability may be normal, while others—especially cognitive (thinking) and language abilities—may be relatively weak. For example, a child with ASD may do well on tasks related to sight (such as putting a puzzle together) but may not do as well on language-based problem-solving tasks. Children with a form of ASD like Asperger syndrome often have average or above-average language skills and do not show delays in cognitive ability or speech.
One in four children with ASD has seizures, often starting either in early childhood or during the teen years.17 Seizures, caused by abnormal electrical activity in the brain, can result in
A short-term loss of consciousness, or a blackout Convulsions, which are uncontrollable shaking of the whole body, or unusual movements Staring spells.
Sometimes lack of sleep or a high fever can trigger a seizure. An electroencephalogram (EEG), a nonsurgical test that records electrical activity in the brain, can help confirm whether a child is having seizures. However, some children with ASD have abnormal EEGs even if they are not having seizures.
Seizures can be treated with medicines called anticonvulsants. Some seizure medicines affect behavior; changes in behavior should be closely watched in children with ASD. In most cases, a doctor will use the lowest dose of medicine that works for the child. Anticonvulsants usually reduce the number of seizures but may not prevent all of them.
For more information about medications, see the NIMH online booklet, "Medications". None of these medications have been approved by the FDA to specifically treat symptoms of ASD.