Perhaps you know someone at school or have a sibling or relative who has a diagnosis on the autism spectrum, or maybe you have been diagnosed with ASD (autism spectrum disorder) yourself. More than 1 in 54 kids in the United States have been diagnosed with some form of Autism Spectrum Disorder (ASD). This guide was created to answer commonly asked questions about ASD.
What is Autism?
Autism is a neurological (brain) disorder. Most people with autism show signs by the time they are three years old but others may have milder symptoms that may go unnoticed until they are older. People diagnosed with ASD are said to be on a “spectrum”–some people are affected a lot and some are affected only a little, but the main characteristics of ASD in teens are limited social awareness and difficulty communicating effectively with others. They may have several very intense interests and/or repetitive behaviors or sensory sensitivities such as trouble handling certain noises or smells.
In 2013, medical and mental health experts changed the definition of two disorders: Asperger’s Disorder and Pervasive Developmental Disorder (PDD). Instead of having individual definitions for these two disorders the decision was made to combine them under the definition of Autism Spectrum Disorder (ASD). People diagnosed with ASD can be affected in different ways.
Facts about ASD
- Autism is not contagious
- Boys are 4 times more likely to be diagnosed with autism than girls
- Behavior/symptoms usually appear by the time a person is 3 years old
- Some differences may be seen during the first year of life
- Anyone – no matter their gender, race, religion, or background – can have ASD
- Social problems, speech, and behaviors can range from mild to severe
- People with the same diagnosis can behave very differently from one another
What are the symptoms of ASD?
A person with autism may have one or more of the following symptoms:
Social communication and interaction problems:
- Lack of interest or awkwardness in interacting with others
- Avoiding eye contact
- Having a hard time making friends
- Not being able to use or read body language, gestures, or facial expressions
- Saying inappropriate things at times
- Having trouble expressing themselves with language, or not speaking at all
- Doing the same behavior or body movement over and over again (flapping their hands, jumping up and down)
- Repeating words or phrases back to the person they are talking to, or reciting whole parts of movies or books or TV shows
- Being super focused on something
- Becoming upset if their daily routine is changed
- Have very intense interests such as learning everything about a certain topic or only wanting to play with one toy or watch one movie
- They may not like being touched
- They may become easily annoyed to very upset by certain noises or other sensory experiences such as textures, smells, and the way things look
- They may look at things in an unusual way
How is ASD diagnosed?
Unfortunately, there are no medical tests such as a blood test or x-ray that can diagnose ASD. Most often a parent/guardian or someone close to a very young child notices some of the signs. If the child’s parent/guardian, teacher, or health care provider is concerned, a specialist will likely refer the child for an evaluation.
A developmental specialist (such as a neurologist, developmental behavioral pediatrician, psychiatrist, or psychologist) will make the diagnosis. Other health care providers specializing in caring for children and teens with developmental disorders including behavioral therapists, occupational therapists, and speech language pathologists will do tests to determine whether a child or teen needs special services. Diagnosis by standardized screening by the age of two (24 months) is ideal; however, many children are not diagnosed until they are older.
How does ASD affect a teen?
Since autism limits a person’s ability to communicate, teens with ASD may have trouble fitting in and making friends. Because they may have unusual behaviors and poor social skills they may be teased and left out of social activities. Sometimes they really have no interest in other kids and would rather be alone, but other times they wish they could make friends and just don’t know how. This can make them feel lonely. If you know someone who has been diagnosed with ASD, it’s important to let them know they are not alone. If you have ASD, feel sad, unhappy or lonely, talk to a parent, health care provider or another trusted adult, and let them know how you are feeling. Many people can help you.
What causes ASD?
The cause of ASD is still unknown. There’s been a lot of research that suggests that ASD may be caused in part by a genetic disorder (a type of condition that runs in families). Research studies have also looked at changes in brain structure and chemicals within the brain as possible factors. Studies have shown that vaccines (shots) do not cause ASD.
How can ASD be treated?
There are many different treatments for ASD: behavioral, educational, and medical. It is important to note that people with ASD often have other associated conditions, such as intellectual disability (~50% cases), which will require specialized management. The following are the therapies that have proven to be the most effective:
- Applied Behavioral Analysis: Applied behavioral analysis is a kind of behavioral therapy that is designed to teach behaviors and skills. It’s also useful in reducing or getting rid of negative behaviors.
- Special Education Programs: These programs provide very organized support and focus on helping someone with ASD develop social, speech, language, self-care, and job skills.
- Social Skills Coaching: These programs provide direct teaching of expected ways to behave and interact with others. The programs that work best include peer models who can help include and coach their classmates and friends with ASD.
- Medication/Mental Health: Medication is sometimes prescribed to help some symptoms of ASD. Mental health professionals often help families find the right therapy based on a person’s specific needs.
Can ASD be prevented?
Unfortunately, this is something that researchers don’t know right now. However, with the right treatment that includes social, speech and language, motor, and cognitive therapies, a person with ASD can learn skills that help them improve their quality of life and contribute more effectively in the community.
I have a friend/relative with ASD. How can I help them?
- Be kind. It’s always nice to be kind to others, regardless of whether they are like us or different.
- Be patient. It may be frustrating when your friend, sibling, or family member with ASD doesn’t pick up on social cues but try to remember that ASD affects a person’s social awareness. They may say inappropriate things because they don’t have the same kind of “filter” or social instincts that other teens may have. Ask them how you can help, and if they would like you to point out these types of behaviors (in a private conversation).
- Have clear communication. It may be necessary to be direct from time to time by saying something such as, “I can’t hang out with you right now because I have plans, but I will see you on Tuesday.”
- Get advice from a parent, teacher, or another adult. It’s helpful to get tips about communicating with someone with ASD from a person who has experience.
- There may be a way to become involved with helping teens with Autism Spectrum Disorders (ASD) in your school or in your community. If you’re interested, see if there’s a program for students with special needs/disabilities in your school, and ask if you can help. There may also be volunteer opportunities in your community, and help is usually needed. These types of programs usually match teens with a special needs student.
How can I learn more about ASD?
To learn more about ASD, check out some of these:
- Autism Spectrum Center at Boston Children’s Hospital
- Life on the Spectrum
- Living with Autism Series, by Autism Society
- I Am Utterly Unique, by Elaine Marie Larson
- Little Rainman, by Karen L. Simmons
- Ten Things Every Child With Autism Wishes You Knew, by Ellen Notbohm
- A Freshman Survival Guide for College Students with Autism Spectrum Disorders, by Haley Moss
- It’s an Autism Thing…I’ll Help You Understand It, by Emma Dalmayne
- Look Me in the Eye: My Life with Aspergers, by John Elder Robinson
- My Brother Charlie, by Denene Millner, Holly Robinson Peete and Ryan Elizabeth Peete (Children’s Book)
- The Way I See It: A Personal look at Autism and Aspergers, by Temple Grandin