What are Autism Spectrum Disorders?
Autism Spectrum Disorders are a group of disorders typified by a child’s problems with social skills, effective communication and behavior. Autism Spectrum Disorders make a child experience the world differently from the way most other children do. It affects the brain and can make it hard for them to understand social situations and to get along with other people.
Each child with an Autism Spectrum Disorder has different symptoms. Some children may have mild symptoms and other children, more severe symptoms.
In the diagnostic manual used by professionals, these disorders are called Pervasive Developmental Disorders. Autism (Autistic Disorder), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Asperger’s Disorder (or Asperger Syndrome), Childhood Disintegrative Disorder and Rett Syndrome are all in this category.
The different types of Autism Spectrum Disorders can be confusing. Sometimes parents will see different professionals, and their child will receive a different “label” from each one. For example, a neurologist might say the child has PDD-NOS, while the psychologist says the child has autism. In other instances a doctor might say the child has Asperger’s, and another doctor could say the child has PDD-NOS or autism.
Remember that most times the specific label isn’t really that important. What is important is that a professional has recognized that your child has an Autism Spectrum Disorder. Then, based on your child’s individual strengths and weaknesses, a treatment and educational plan can be developed. A child with a diagnosis of autism may well be qualified for more services.
Everyone is different, and every person with an Autism Spectrum Disorder has particular strengths and areas of growth. Your encouragement, love and support help your child have a full, happy and independent life.
What are some common signs of an Autism Spectrum Disorder?
(Not all these symptoms need be present.)
Here are some signs:
- As a baby, he/she does not imitate other children and does not reach out to you.
- Doesn’t look up or respond to his/her name. May seem deaf at times.
- Does not seek you out for attention or for only social reasons.
- Does not point or gesture.
- Voice and facial expressions can be flat, lacking “feeling” and may not match what the child is saying.
- Difficulty understanding what people around them think and feel.
- Delay in speaking, or has speech and then loses it.
- Speaks in great detail about one subject of topic (for example, only wants to talk about dinosaurs).
- Has difficulty having a conversation (back and forth)
- Has difficulty talking about abstract ideas or emotions; takes everything at face value.
- Does not develop age-appropriate peer relationships (does not play well or have friendships with same-age children), and has difficulty mixing with others.
- Obsessive (must do something the same way each time) or doesn’t play in a usual way. (for example, needing to line up toys or spin objects over and over again).
- Eats only certain foods or only likes clothes that feel a certain way.
- Has a hard time relating with people around them.
- Does not handle change well.
- Problems with motor skills such as tying shoes, buttoning a shirt and handwriting.
- Upset when normal routines are changed in any way.
- May smell or lick toys.
- May react strongly to loud noises such as car horns.
For example, a child with an Autism Spectrum Disorder may:
- Spend hours counting the same flowers in a park, or watch only the same video or show over and over.
- Talk about one thing all the time (like dinosaurs) and tell you very specific details.
- Be in a social gathering such as a birthday party and not talk with anyone.
- Throw a temper tantrum when a routine is changed, such as missing a karate class because it gets canceled or driving a different way to school.
What can I do to help my child?
You have made an important first step by reading more information on Autism Spectrum Disorders. Another step you can take is to talk with other parents who have gone through what you are going through. Parent support and advocacy groups can help, too. Research tells us that the earlier we begin to help children grow and develop, the better the results for the child and family.
Below are some checklists of things to help your child. Remember that you are not alone.
IN THE STATE OF FLORIDA:
Get my child evaluated (tested):
If your child is between ages birth to 3 years old, he or she can be evaluated by a team of experts through the Early Steps program Your child may be eligible for free services. Contact one of the centers closest to your home.
For more information or to make a referral to Early Steps, please call (800) 218-0001
or visit the contact list : http://www.floridahealth.gov/AlternateSites/CMS-Kids/home/contact/earlysteps.pdf
If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing, he/she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS) program. They also provide testing for special education programs.
Florida’s FDLRS Child Find
Statewide Contact :
Florida Department of Education
To register for services for your child. If your child is 3 years old or older and has autism, he/she is eligible to apply for services. Examples of some services for which your child may be eligible for are:
- Respite: A caregiver comes to your home so you can take a break for shopping, visiting friends and family or just to have a night out.
- Behavioral services: Teaches your child ways to deal with day-to-day problems.
- In-home supports: Personal care assistance, companions, homemaker services
For more information on services and how to apply, please click here.
Work with my child’s service providers:
A service provider — anyone who works with you and your child — can be your pediatrician, a behavior therapist, a teacher, a principal, a social worker or any professional. Remember you know more about your child than anyone else and are the main influence in your child’s life. Here are some tips for speaking with service providers:
- Feel free to ask questions and make comments. No one knows your child better than you. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don’t understand.
- If you think your child needs something in particular (like behavioral therapy), keep asking until you get it or until you learn why it is not needed.
- Work with professionals in early intervention or in your school to write your child’s IFSP or IEP that reflects your child’s needs and abilities. Be sure it includes such services such as speech-language pathology, physical therapy and occupational therapy if your child needs these.
Get more information: Visit more websites. Read a book. Watch a video about Autism Spectrum Disorders. Include your child and family. Talk with other parents. Help Me Grow can help you meet other parents and get services.
Things I can do at home to help my child:
- Help your child through their repetitive routines, but then guide that child to another activity with more variety. For example, pace around the room with that child, but then lead him or her into another room. When possible, try to get your child to limit excessive behaviors.
- Children with Autism Spectrum Disorders may not understand the meaning of verbal praise (for example saying, “Good boy”), so reinforce their good behavior with other types of rewards. For example, let a child play with a favorite toy a little longer than usual, go to the park or have a favorite snack. You also can use a chart with stickers given out when he or she does something good. Things they can see are the best kinds of praise for children with an Autism Spectrum Disorder.
- Children with Autism Spectrum Disorders are very visual. Create schedules for your child that uses pictures and symbols. (See the example below.)
- If your child has a problem with language skills, help develop language by using pictures. For example, if your child wants an apple have a picture showing the fruit. Every time your child wants an apple, have him or her point at it and you say the word “Apple.” This will help a child relate the picture with the word. Do the same with pictures of family members and therapists.
- For sensory problems (involving touch, hearing and smell) try to limit exposure to things that can trigger an episode of obsessive or compulsive behavior or a tantrum. It may be things such as loud or high pitched noises (like a small barking dog), or bright lights (especially fluorescent lights), crowds, scratchy clothes or strong smells like perfumes. Avoid things that give your child a bad reaction. If your child has a problem with crowds and noise, you may have to go to a store early or keep that child away from certain things.
- This doesn’t mean that children should avoid using their senses or that you should limit their experiences. Sensory integration is important for a child with problems with how the body understands senses. Have a home that helps children work out their senses — things that smell good, feel good, and where they can actively play and explore with their senses.
- Active play is key. Sitting in front of a TV or playing video games for hours is not good. Your child also may have lots of energy, needing to do lots of play time before “calming” down. Make sure your house is “safe.” Add lots of active play to the daily routine. Many parents recommend an hour of active play or exercise so their child can stay calm and go to bed on time.
How common are Autism Spectrum Disorders?
Autism Spectrum Disorders, affecting 1 in every 166 people, are more common in boys than girls and occur in all racial, ethnic and social groups.
Is there a cure or treatment for Autism Spectrum Disorders? Why does this happen?
There is no specific treatment or cure for Autism Spectrum Disorders. The cause seems to be a combination of genetics and some sort of environmental trigger. Most interventions focus on specific problem areas, such as social skills, communication and behavior. The most common treatment to help children with Autism Spectrum Disorders involves education and therapy. Many children with high-functioning autism or Asperger Syndrome successfully finish high school and attend college.
What does this mean to my child’s health?
Your child will require the regular check-ups and immunizations that every other child needs. Some children are not aware of dangerous situations and may require close supervision near busy streets and other water areas. Children with Autism Spectrum Disorders are more likely to develop seizures than other children. If certain symptoms occur (such as frequent staring off into space), see a neurologist.
What does an Autism Spectrum Disorder mean to my child’s intelligence and learning?
Your child’s abilities will increase with a program:
- That builds on your child’s interests.
- Teaches tasks as a series of simple steps.
- Actively teaches your child to focus attention during complex activities.
- Provides regular reinforcement of positive behavior.
- Offers a predictable schedule.
Some strategies/programs that may help your child are:
Social Skills Training: This is among the most important parts of treatment. Your child will learn skills to get along well with other children. For example:
- Rules for eye contact, and social distance.
- To look for signs to tell how the other person is feeling.
- Social skills best practiced in small groups. You can help by practicing skills at home.
Cognitive Behavior Therapy: A type of “talk” therapy to help the more explosive or anxious children manage their emotions better and cut back on obsessive interests and repetitive routines. Your communication with the therapist is vital to understand your child and achieve the best results.
Behavior Therapy: This can sometimes help with teaching skills by breaking down task behavior into smaller steps. A behavior therapist can help develop programs to reduce problem behaviors and teach more appropriate behaviors.
Medication: There is no specific medication for children with Autism Spectrum Disorders. But some medications may be used to treat attention, aggression, depression or anxiety. If your child is taking medication, make arrangements with the school to make sure that he or she is taking the medicine the right way.
Occupational or Physical Therapy: Helps children with clumsiness and other issues. Have the therapist teach you some things you can do at home to improve your child’s coordination.
Specialized Speech or Language Therapy: Helps children who have trouble with the give-and-take of normal conversation. Talk with the therapist about how to improve these skills during everyday activities in the home.
Educational Interventions: Autism Spectrum Disorders cover a wide range of abilities in children. The school must create an individualized program for your child. Help the school by explaining how your child learns and communicates. Always make sure that the teachers make your child aware of any changes occurring in the school schedule. Many schools often will hire an aide specifically for your child to help with personal issues. Communicating with your child’s school and staff can help your child’s individualized education goals come true.
Some parents wonder if their child will be able to attend school. All children have the right to a free and appropriate public education . Your child may need the supports found through special-education classes.
Even before kindergarten there are programs designed to help your child’s development. In every state and community there is an early intervention program. This program helps arrange for such services as physical therapy, occupational therapy, speech therapy, and for the information and training needs of your family. Early intervention will maximize children’s development. You do not want to miss out on these windows of opportunity.
As with all children, your child will have talents and gifts. Seeing your child first as a child — and not a child with an Autism Spectrum Disorder — is important. This may take time, but as you discover your child’s potential, you can develop a “normal” life for yourself and your family. It may not be the life that you had planned for, but it will be a life with many rewards. To read a poem that has comforted many families, click here.
Who are some professionals my child may need to see?
Your child may need to see many different health care specialists. For example:
- Pediatrician: A doctor who specializes in treating children. The word “pediatric” in front of a professional’s title means he or she works with children.
- Developmental pediatrician: A doctor with specialized training in child development.
- Pediatric psychologist: A professional who will test your child’s ability to learn and reason. A thorough evaluation (testing) by a qualified psychologist can tell you if your child’s ability to learn has been affected by having cerebral palsy. An evaluation is painless and usually doesn’t take long.
- Pediatric neuropsychologist: A professional who specializes in the relationship of abilities, behaviors and mental skills in children. Pediatric or child neuropsychologists do testing and treatment for children with problems that include developmental, mental, psychological, and neurological conditions or issues.
- Behavior analyst: A professional who specializes in analyzing children’s behaviors and identifying ways to eliminate unwanted behaviors or encourage wanted behaviors.
- Behavior therapist: A professional who specializes in training caring adults to implement behavior plans to eliminate unwanted behaviors or encourage wanted behaviors in children.
- Physical therapist: A professional who works with your child’s muscle tone, flexibility and stability, and motor development.
- Occupational therapist: A professional who works on your child’s ability to reach and hold objects. The therapist also will be concerned with the way your child processes information through vision, touch, hearing and movement.
- Speech therapist: A professional who concentrates on your child’s ability to communicate with others.
- Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.
- Care coordinator: An individual responsible for organizing the details across agency lines and serves as your contact to help you and your family get services and assistance.
- Parent support: Getting in contact with another family who has a child with an Autism Spectrum Disorder can be a great source of support. Other parents can share their personal experiences, strength, advice, resources and hope. Parent-to-parent support groups are available with free services and supports.
- Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child’s development and working with you to learn the techniques that benefit your child.
What other important facts about Autism
Spectrum Disorders should I know?
- Physically, children with autism look like any other child.
- Poor parenting does not cause autism.
- Vaccines do not cause autism.
- Many children with autism have difficulty understanding the meaning of body language, facial expressions or conversations that are not directly to the point (meaning things that are implied instead of plainly spoken). This can be helped with social skills training.
- Some individuals with autism may find friendships difficult, while others may be very social. Social-skills and behavior training helps children who find it hard to make friends.
- Children with autism may have some mental retardation, but keep in mind it can be hard to measure. Interpreting IQ (intelligence test) scores may be difficult because most intelligence tests are not designed for people with autism. People with autism do not perceive or relate to their environment in typical ways. When tested, some areas of ability are normal or even above average, and some areas may be especially weak. For example, a child with autism may do extremely well on the parts of the test that measure visual skills, but earn low scores on the language part.
- One in four children with autism may develop seizures, starting either in early childhood or adolescence. EEGs (a test to measure brain waves) can help test for seizures. Fortunately, in most cases, seizures can be controlled with medication.
- About 2-5% of children with autism have Fragile X syndrome (found most often in boys). It is very important that you have your child checked for this syndrome, especially if you are thinking about having another child as it is an inherited condition (passed on by the parents). People with this inherited disorder are more likely to have mental retardation. They also may look different than other children and have unusual physical features.
- 1-4% of children with autism will have Tuberous Sclerosis, a rare disorder that causes benign (non-cancerous) tumors to grow in the brain and other organs in the body. Treatments may include medications, surgery, and occupational therapy to address the different symptoms present. www.ninds.nih.gov/disorders/tuberous_sclerosis
A few children with autism display remarkable abilities or special gifts, although this is not very common. For example:
- Ability to draw detailed, realistic pictures with perspective and three dimensions, while most children their age are only drawing scribbles.
- Ability to put together adult-level jigsaw puzzles while still a toddler.
- Beginning to read very early, sometimes even before they begin to speak.
- A great sense of hearing and can play music with instruments they have never been taught.
- Playing a song accurately after hearing it once.
- Naming a music note they hear.
- Being able to memorize things such as entire television shows, pages of the phone book, or the scores of a team’s Major League baseball game going back years.
What are some websites where I can go to learn more about Autism Spectrum Disorders?
National Institute of Neurological Disorders and Stroke (NINDS) http://www.ninds.nih.gov/ The leading supporter of biomedical research on disorders of the brain and nervous system.
National Dissemination Center for Children with Disabilities (NICHCY) http://www.parentcenterhub.org/repository/autism/ A national information center providing information on disabilities and disability-related issues across the nation, focusing on children and youth
Online Asperger Syndrome Information and Support (OASIS) http://www.aspergersyndrome.org/ Helpful information online for parents and teachers.
What are some books to help my family and I learn more about Autism Spectrum Disorders?
Books for Children:
Andy and His Yellow Frisbee by Mary Thompson. A view of childhood autism from a young person’s point of view. (Grades 1-3)
Ian’s Walk: A story about Autism by Laurie Lears and Karen Ritz. Julie, who appears to be 8 or 9, tells about an outing to the park with her older sister and younger brother, who has autism. As they walk through town, she describes the things that Ian does and the sensations he experiences that are different from what most people do and feel. (Ages 4-8)
Looking After Louis by Lesley Ely and Polly Donbar. This book is told from the point of view of a little girl who sits next to a boy with autism. Louis, who repeats words he hears and has little interaction with his peers, gets away with behavior that the other children cannot, such as repeating what the teacher says. (Ages 4-8)
Asperger’s Huh? by Rosina Schnurr. A simple and insightful view into the world of a child with Asperger’s Syndrome. (Ages 6-12)
This is Asperger’s Syndrome by Elisa Gagnon and Brenda Smith Myles. This book shows the unique behaviors of individuals with Asperger Syndrome by letting the reader experience the world from the perspective of a young child with Asperger Syndrome. The brief, easy-to-understand text is accompanied by cartoon-like characters. (Ages 9-12)
Knowing Yourself, Knowing Others by Barbara Cooper and Nancy Widdows. A workbook for children with Asperger’s Syndrome.
The Social Success Workbook by Barbara Cooper and Nancy Widdows. A workbook for teens with Asperger’s Syndrome. (Ages 12-18)
Making and Keeping Friends by John J. Schmidt. Lessons, stories and activities for building relationships. (Grades 4-8)
Books for Siblings (brothers and sisters):
Autism Through a Sister’s Eyes by Eve B. Band. A young girl’s view of her brother’s autism.
My Brother, Matthew by Mary Thompson. In this book David tells what happens in his family when his brother Matthew is born with a disability. (Grades 1-4)
Views From Our Shoes by Donald J. Meyer. This book is full of articles by 45 children between the ages of 4-18 years, sharing their experiences as the brother or sister of a person with a disability. (Grades 3-10)
Everybody is Different: A Book for Young People Who Have Brothers or Sisters with Autism by Fiona Bleach. This book answers the questions of brothers and sisters of young people on the autistic spectrum. (Ages 9-12)
My Friend with Autism: A Coloring Book for Peers and Siblings by Beverly Bishop. A coloring book to help friends and siblings (brothers and sisters) understand autism and Asperger’s Syndrome. (Ages 4-8)
The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Autism by Don Meyer. Give teenagers a chance to say what’s on their minds, and you might be surprised by what you hear. That’s exactly what Don Meyer, creator of Sibshops and author of “Views from Our Shoes,” did when he invited together a group of 80 teenagers from the United States and abroad to talk about what it’s like to have a brother or sister with special needs.
Books for Parents:
Children with Autism: A Parent’s Guide by Michael D. Powers. For both the new parent coping with a child’s recent diagnosis and one who’s an experienced advocate.
The Out-Of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz, M.A. (also wrote a workbook with activities called “The Out-Of-Sync Child Has Fun”).
A Parent’s Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Challenges and Help Your Child Thrive by Sally Ozonoff, Ph.D., et al. A guide for high-functioning autism (mild case of autism) and Asperger’s. This book presents information on things to do for older children and adults.
The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders by Bryna Siegel. For parents of children with autism and for teachers, child specialists, and other professionals who care for them.
Children & Youth with Asperger Syndrome: Strategies for Success in Inclusive Settings by Brenda Smith Myles (2005), Corwin Press.
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder and Other ASDs by Chantal Sicile-Kira. Information and useful advice for parents and professionals, especially those who are new to the world of autism.
Keys to Parenting a Child with Autism by Marlene Brill. A book discussing current trends and technologies in diagnosing and treating autism.
Helping Children with Autism Learn: A Guide to Treatment Approaches for Parents and Professionals by Bryna Siegel. This book has information for educating the child with autism.
Asperger’s Syndrome: A Guide for Parents and Professionals by Tony Attwood. This guide helps parents and professionals to identify, treat and care for children and adults with Asperger’s Syndrome. The book provides a description and analysis of the characteristics of the syndrome and provides strategies for different symptoms.
Thinking In Pictures, and Other Reports from My Life with Autism by Temple Grandin. A high-functioning person with autism, Grandin presents articles on her life and her work as an animal scientist.
Videos for Parents:
Navigating the Social World by Jeannette McAfee. A dynamic workshop offering strategies for teaching social skills in fun ways. This three-hour video brings the book to life with exercises and skits acted out by young people as role models.
Asperger’s Syndrome by Dr. Tony Attwood. A guide for parents and professionals about the syndrome, including a special feature on Dr. Attwood’s life experiences.
Asperger’s Syndrome, Volume 2 by Dr. Tony Attwood. This video has three distinct sections, each an hour long beginning with an overview of Asperger’s Syndrome.