Patient and family education is important to us. Here you can learn more about autism spectrum disorders in children, and view trusted insights from KidsHealth.org, the No. 1 most viewed health site for children, created by the experts at Nemours. We've also provided information from the most respected nonprofit organizations.
About Autism in Children
Autism — whether mild or severe — is a lifelong condition and your child may need medication, therapy or support throughout his or her life. Thankfully today, unlike only a few decades ago, autism specialists can offer many interventions and therapies that can remarkably increase your child’s skills and abilities. The next few decades (and even the next few years) show great promise of more to come.
Autism is a neurodevelopmental disorder, which means it’s a condition related to the improper development of the neurons in the brain.
Children with an autism spectrum disorder develop “unevenly” and have difficulties in communication and social interactions and exhibit repetitive or restrictive behaviors. Very often, these children have exceptional strengths in other areas, such as math, visual processing and musical and artistic abilities (to name a few). Autism spectrum disorder is an active area of research — every day we’re uncovering important information about the disorder.
Traditional Types of Autism
Autism has had many names, including:
- autistic disorder (or autism) — refers to the more severe cases in which children have difficulty communicating and interacting with others (or they may be unable to communicate), and also exhibit unique repetitive/restrictive behaviors such as hand flapping, spinning or rocking.
- Asperger syndrome (AS, also called Asperger’s) — a milder form of autism in which children have average or above-average intelligence, impaired language skills only in some areas (like language pragmatics, or understanding the meaning of words in certain situations), impaired social skills (problems with reciprocity, or the natural “give and take” that occurs in a conversation) and repetitive/restrictive behaviors, sometimes related to a special interest.
- pervasive developmental disorder-not otherwise specified (PDD-NOS) — Because there are many variations within the autism spectrum — with no two children experiencing the same symptoms or patterns of behavior — today we refer to all types of autism as “autism spectrum disorder” regardless of how mild or severe symptoms may be.
The Centers for Disease Control (CDC) estimates that 1 in 88 children has an autism spectrum disorder. And while there are many theories about the causes of autism spectrum disorder in children, large research studies show vaccinations do not increase the risk for the disorder. Other studies show that genes may play a role, and possibly prenatal illness or infections, but it is not caused by anything a mother did, or did not do, during pregnancy. What’s more, autism is not a result of a child’s upbringing, amount of nurturing or environment at home. The cause of autism development disorder continues to be a very active area of study.
Children with an autism spectrum disorder exhibit behavioral symptoms in specific areas, with different degrees of severity, and at different ages or life stages. Some symptoms include:
- delayed babbling or speaking
- does not speak, or is “nonverbal” (but may be able to communicate using pictures or assistive technologies)
- problems understanding the meaning of words
- difficulty starting and sustaining (continuing) conversation
- can only talk about a special interest (no “small talk”)
- does not understand tone, body language or facial expressions
- interprets words literally (may not understand statements like “it’s raining cats and dogs”)
- may speak in a different tone (monotone or high-pitched)
Impaired Social Interaction
- does not engage in interactions or imitation (smiling back or responding to name)
- reduced interest in people
- lack of eye contact
- difficulty making and keeping friends
- difficulty playing games or working in groups (has own rules or way of playing)
- responds to things differently (laughs when it’s serious or cries when it’s not)
- hard time understanding how people think or feel (difficulty with or lack of empathy)
- difficulty seeing other people’s perspective
- difficulty regulating emotions (tantrums when overloaded)
- repeats words over and over
- upset when a routine is disrupted or changed
- hand-flapping, rocking or spinning
- uses toys differently (repeatedly lines items up, spins wheels on vehicles, opens and shuts/turns things on and off)
- intense fixation with details, particularly related to a special interest
Sensory Processing Difficulties
Some children may be easily overloaded by too much — or too little — sensory input. For example, children with an autism spectrum disorder may:
- react adversely to itchy clothing (tags or seams)
- dislike loud noises (vacuum cleaner, school bell, etc.)
- avoid bright lights (particularly flickering of fluorescent lighting)
- avoid being touched or hugged (or conversely, need more touch)
From Nemours' KidsHealth
- Giving Teens a Voice in Health Care Decisions
- Raising a Child With Autism: Paige and Iain's Story
- Is There a Connection Between Vaccines and Autism?
- Disciplining Your Child With Special Needs
- Occupational Therapy
- Does My Toddler Have a Language Delay?
- Camps for Kids With Special Needs
- Relaxation Techniques for Children With Serious Illness
- Individualized Education Programs (IEPs)
- Sending Your Child With Special Needs to Camp
- Asperger Syndrome
- Autism Special Needs Factsheet
- Anxiety, Fears, and Phobias
- What Is ADHD?
- Brain and Nervous System
- Auditory Processing Disorder
- Obsessive-Compulsive Disorder
- Delayed Speech or Language Development
- Sleep Problems in Teens
- Speech-Language Therapy
- A to Z: Autism
Trusted External Resources
- The Power of Positive Parenting: A Wonderful Way to Raise Children, by Dr. Glenn I. Latham
- Educate Toward Recovery: Turning the Tables on Autism, by MA BCBA Robert Schramm
- Autism’s False Prophets: Bad Science, Risky Medicine, and the Search For A Cure, by Paul A. Offit, MD
Individualized Education Programs (IEPs)
What's an IEP?
Kids with delayed skills or other disabilities might be eligible for special services that provide individualized education programs in public schools, free of charge to families. Understanding how to access these services can help parents be effective advocates for their kids.
The passage of the updated version of the Individuals with Disabilities Education Act (IDEA 2004) made parents of kids with special needs even more crucial members of their child's education team.
Parents can now work with educators to develop a plan — the individualized education program (IEP) — to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them.
Who Needs an IEP?
A child who has difficulty learning and functioning and has been identified as a special needs student is the perfect candidate for an IEP.
Kids struggling in school may qualify for support services, allowing them to be taught in a special way, for reasons such as:
- learning disabilities
- attention deficit hyperactivity disorder (ADHD)
- emotional disorders
- cognitive challenges
- hearing impairment
- visual impairment
- speech or language impairment
- developmental delay
- physical disabilities
How Are Services Delivered?
In most cases, the services and goals outlined in an IEP can be provided in a standard school environment. This can be done in the regular classroom (for example, a reading teacher helping a small group of children who need extra assistance while the other kids in the class work on reading with the regular teacher) or in a special resource room in the regular school. The resource room can serve a group of kids with similar needs who are brought together for help.
However, kids who need intense intervention may be taught in a special school environment. These classes have fewer students per teacher, allowing for more individualized attention.
In addition, the teacher usually has specific training in helping kids with special educational needs. The children spend most of their day in a special classroom and join the regular classes for nonacademic activities (like music and gym) or in academic activities in which they don't need extra help.
Because the goal of IDEA is to ensure that each child is educated in the least restrictive environment possible, effort is made to help kids stay in a regular classroom. However, when needs are best met in a special class, then kids might be placed in one.
The Referral and Evaluation Process
The referral process generally begins when a teacher, parent, or doctor is concerned that a child may be having trouble in the classroom, and the teacher notifies the school counselor or psychologist.
The first step is to gather specific data regarding the student's progress or academic problems. This may be done through:
- a conference with parents
- a conference with the student
- observation of the student
- analysis of the student's performance (attention, behavior, work completion, tests, classwork, homework, etc.)
This information helps school personnel determine the next step. At this point, strategies specific to the student could be used to help the child become more successful in school. If this doesn't work, the child would be tested for a specific learning disability or other impairment to help determine qualification for special services.
It's important to note, though, that the presence of a disability doesn't automatically guarantee a child will receive services. To be eligible, the disability must affect functioning at school.
To determine eligibility, a multidisciplinary team of professionals will evaluate the child based on their observations; the child's performance on standardized tests; and daily work such as tests, quizzes, classwork, and homework.
Who's On the Team?
The professionals on the evaluation team can include:
- a psychologist
- a physical therapist
- an occupational therapist
- a speech therapist
- a special educator
- a vision or hearing specialist
- others, depending on the child's specific needs
As a parent, you can decide whether to have your child assessed. If you choose to do so, you'll be asked to sign a permission form that will detail who is involved in the process and the types of tests they use. These tests might include measures of specific school skills, such as reading or math, as well as more general developmental skills, such as speech and language. Testing does not necessarily mean that a child will receive services.
Once the team members complete their individual assessments, they develop a comprehensive evaluation report (CER) that compiles their findings, offers an educational classification, and outlines the skills and support the child will need.
The parents then have a chance to review the report before the IEP is developed. Some parents will disagree with the report, and they will have the opportunity to work together with the school to come up with a plan that best meets the child's needs.
Developing an IEP
The next step is an IEP meeting at which the team and parents decide what will go into the plan. In addition to the evaluation team, a regular teacher should be present to offer suggestions about how the plan can help the child's progress in the standard education curriculum.
At the meeting, the team will discuss your child's educational needs — as described in the CER — and come up with specific, measurable short-term and annual goals for each of those needs. If you attend this meeting, you can take an active role in developing the goals and determining which skills or areas will receive the most attention.
The cover page of the IEP outlines the support services your child will receive and how often they will be provided (for example, occupational therapy twice a week). Support services might include special education, speech therapy, occupational or physical therapy, counseling, audiology, medical services, nursing, and vision or hearing therapy. They might also include transportation; the extent of participation in programs for students without disabilities; what, if any, modifications are needed in the administration of statewide assessment of student achievement; and, beginning at age 14, the inclusion of transition planning as a part of the process.
If the team recommends several services, the amount of time they take in the child's school schedule can seem overwhelming. To ease that load, some services may be provided on a consultative basis. In these cases, the professional consults with the teacher to come up with strategies to help the child but doesn't offer any hands-on instruction. For instance, an occupational therapist may suggest accommodations for a child with fine-motor problems that affect handwriting, and the classroom teacher would incorporate these suggestions into the handwriting lessons taught to the entire class.
Other services can be delivered right in the classroom, so the child's day isn't interrupted by therapy. The child who has difficulty with handwriting might work one on one with an occupational therapist while everyone else practices their handwriting skills. When deciding how and where services are offered, the child's comfort and dignity should be a top priority.
The IEP should be reviewed annually to update the goals and make sure the levels of service meet your child's needs. However, IEPs can be changed at any time on an as-needed basis. If you think your child needs more, fewer, or different services, you can request a meeting and bring the team together to discuss your concerns.
Your Legal Rights
Specific timelines ensure that the development of an IEP moves from referral to providing services as quickly as possible. Be sure to ask about this timeframe and get a copy of your parents' rights when your child is referred. These guidelines (sometimes called procedural safeguards) outline your rights as a parent to control what happens to your child during each step of the process.
The parents' rights also describe how you can proceed if you disagree with any part of the CER or the IEP — mediation and hearings both are options. You can get information about low-cost or free legal representation from the school district or, if your child is in Early Intervention (for kids up to age 3), through that program.
Attorneys and paid advocates familiar with the IEP process will provide representation if you need it. You also may invite anyone who knows or works with your child whose input you feel would be helpful to join the IEP team. Federally supported programs in each state support parent-to-parent information and training activities for parents of children with special needs. The Parent Training and Information Projects conduct workshops, publish newsletters, and answer questions by phone or by mail about parent-to-parent activities.
A Final Word
Parents have the right to choose where their kids will be educated. This choice includes public or private elementary schools and secondary schools, including religious schools. It also includes charter schools and home schools.
However, it is important to understand that the rights of children with disabilities who are placed by their parents in private elementary schools and secondary schools are not the same as those of kids with disabilities who are enrolled in public schools or placed by public agencies in private schools when the public school is unable to provide a free appropriate public education (FAPE).
Two major differences that parents, teachers, other school staff, private school representatives, and the kids need to know about are:
- Children with disabilities who are placed by their parents in private schools may not get the same services they would receive in a public school.
- Not all kids with disabilities placed by their parents in private schools will receive services.
The IEP process is complex, but it's also an effective way to address how your child learns and functions. If you have concerns, don't hesitate to ask questions about the evaluation findings or the goals recommended by the team. You know your child best and should play a central role in creating a learning plan tailored to his or her specific needs.
Reviewed by: Steven J. Bachrach, MD
Date reviewed: October 11, 2016