Autism Spectrum Disorder
ABA Frequently Asked Questions for Members & Family
What is Applied Behavior Analysis (ABA)?
Applied Behavior Analysis, or ABA, has become a widely accepted treatment approach that focuses on improving specific behaviors, such as social skills, communication, and adaptive learning skills like hygiene, and domestic capabilities. It is a flexible treatment that can be adapted to meet the needs of each unique person, can be provided in many locations, and can involve one-to-one teaching and/or group instruction.
What is the goal of ABA?
The goal of ABA is to increase behavior that is helpful and decrease behavior that is harmful or that is negatively affecting learning. ABA can also help transfer skills and behavior from one situation to
another, assist with controlling situations where negative behaviors occur and minimize negative behavior.
What kind of provider does ABA?
A Board Certified Behavior Analyst (BCBA) or other licensed professional will develop a treatment plan based on the strengths, weaknesses, interests, and abilities of your child. The BCBA then works with a technician to execute the program created specific to your child.
Where does ABA treatment occur?
ABA can be done in multiple settings (home, community or office), however it is usually delivered in the home by a technician, who implements the treatment plan developed by the BCBA or other licensed professional.
How often does ABA treatment occur?
The length of time spent in ABA depends on the severity of the problem and the individual child’s rate of improvement. These programs can be as short as 2 hours per week or be as long as 30-40 hours per week, depending on the needs of your child.
Who participates in ABA treatment?
The BCBA or other licensed professional, the technician(s) assigned to work with the BCBA, the child, and family/caregivers. Parent training is an essential component of all ABA programs. This helps parents or caregivers learn how to set up the child’s environment for success and how to respond to increase positive behaviors and reduce challenging behaviors.
How will I be notified about by child’s treatment and/or progress?
The ABA provider should provide continuous feedback to parents or caregivers about their child’s progress in treatment. Parents/caregivers should be included in treatment planning and development of treatment goals.
How do I get my child ABA treatment?
Most insurance plans now cover ABA, however you should always verify your plan benefits to ensure
it includes coverage of ABA and if there are any limitations, such as diagnosis. Many plans will only cover ABA for Autism.
In order to access ABA services, your child should first have an evaluation by a doctor or Licensed Clinical Psychologist, who will provide a diagnosis and recommendation for treatment. If ABA is recommended referrals to ABA providers for an initial ABA Assessment can be obtained by calling the number on your insurance card.
Resources
Centers for Disease and Prevention
Autism Speaks
Applied Behavior Analysis
Applied Behavior Analysis, or ABA, has become a widely accepted treatment approach that focuses on improving specific behaviors, such as social skills, communication, and adaptive learning skills like hygiene, and domestic capabilities. It is a flexible treatment that can be adapted to meet the needs of each unique person, can be provided in many locations, and can involve one-to-one teaching and/or group instruction.
The goal of ABA is to increase behavior that is helpful and decrease behavior that is harmful or that is affecting learning. ABA can also help transfer skills and behavior from one situation to another, assist with controlling situations where negative behaviors occur and minimize negative behavior. Progress is tracked and measured by collecting data on behaviors and skills each session.
The Board Certified Behavior Analyst (BCBA) or other licensed professional will develop a treatment plan based on the strengths, weaknesses, interests, and abilities of your child to narrow the gap between their current functioning and those of similar-aged peers. For every problem behavior, an alternative replacement behavior is identified and taught to ensure your child has the skills to meet their needs. The BCBA then works with a technician to execute the program created specific to your child.
Usually delivered in the home, a technician will work with your child to develop their skills and reduce behaviors that may be harmful to themselves or others, disruptive to others or make them stand out more. These technicians will follow the treatment plan developed by the BCBAs or other licensed professional, to change the environment in certain ways to help achieve your child’s goals. Regular supervision will occur as the BCBA/licensed professional attends sessions with the technician to monitor the progress of your specific program.
The technician will work directly with you and your child to practice skills and work on the individual goals developed by the BCBA or other licensed professional. There are different types of ABA, some examples are:
- Discrete Trial Training (DTT) – Teaches using a series of trials to teach each step of a desired behavior or response. Correct answers and behaviors are rewarded, incorrect ones are ignored.
- Natural Environment Teaching (NET) – Teaches skills in the natural environment.
- Early Intensive Behavioral Intervention (EIBI) – Used with very young children (under age 5).
- Pivotal Response Training (PRT) – Works to increase motivation to learn, monitor own behavior, and initiate communication.
- Verbal Behavior Intervention (VBI) – Focus is on teaching verbal skills.
The length of time spent in ABA depends on the severity of the problem and the individual child’s rate of improvement. These programs can be as short as two hours per week or be as long as 30-40 hours per week, depending on the needs of your child.
Parent training is also an essential component of all ABA programs. This helps parents or caregivers learn how to set up the child’s environment for success and how to respond to increase positive behaviors and reduce challenging behaviors. Another important therapy is the use of social skills groups in which children can learn to interact more appropriately with others of similar ages.
AT-A-GLANCE RESOURCE GUIDE: Applied Behavior Analysis (ABA) and Autism
Achieve Solutions – A Beacon Health Options website that provides members with information, tools, andresources on a variety of topics. Search for “Autism” or “ABA” in the search bar on the Achieve Solutionshomepage for more information.
AutismSociety–Providesadvocacy,education,informationandreferral,andsupport.
Autism Speaks – Resource for locating services, support groups, school advocacy, learning opportunities,summercamplinks,scholarshipopportunities,andresourcesineachstate.Includesthe“100DayKit”fornewlydiagnosed families of young children and school age children.
AutismSupportNetwork–Freesupportcommunitywherefamiliescanconnectwithotherfamiliesandindividuals impacted by autism.Also includes resources, news articles, and events
CambridgeCenterforBehavioralStudies–AscientificviewofthecausesofautismandtheAppliedBehaviorAnalysisapproach to its treatment. Articles,FAQs, and videos.
Centers for Disease Control and Prevention (CDC) – An operating unit of the Department of Health and HumanServices, the CDC is the nation’s health protection agency.The CDC’s autism site includes information aboutscreening and diagnosis, and treatments, as well as autism related research, data, and articles.
Articles & Other Resources
- What is ABA?-https://www.autismspeaks.org/applied-behavior-analysis-aba-autism-treatment
- ABA:What Parents Need to Know-https://www.youtube.com/watch?v=k-mK0o6hWMI
- Finding the Right ABA Treatment-https://depts.washington.edu/uwautism/wp-content/uploads/2020/10/4.-UWAC-Finding-the-Right-ABA-Treatment.pdf
- How Do I Know I’m Getting a “Good” ABA Program? –https://childmind.org/article/know-getting-good-aba/
- 5 Red Flags You Need a New ABA Provider-https://www.appliedbehavioranalysisedu.org/5-red-flags-that-you-need-to-find-another-aba/
Autism FAQs
The autism spectrum disorder (ASD) —or autism—is a condition that keeps a child from learning how to interact with the world around them. It can get in the way of a child’s ability to speak or can keep them from making sense of the social cues we use to get along with others. It can make them act in strange ways.
For example, the child might repeat words or make patterns with their hands, over and over for hours. They might focus on one object, such as a radiator.
A child with autism spectrum disorder (ASD) has a problem in three broad areas: communication, social interaction, and behavior. Those problems can be mild or severe, or they can be worse in one area but not in the other two.
There is no one symptom that proves a person has autism. Each person’s mixture of issues in the three developmental areas is unique. The strength of those problems can be measured from mild to severe, or anything in between. This is why autism is called a spectrum disorder.
How many people have it?
There is no exact count, but there may be between 1 million and 1.5 million people with autism spectrum disorder in the United States. It is the fastest growing developmental disability in the country.
What causes ASD?
Scientists do not know exactly what causes autism, but they know it most often starts in the first months of life, maybe even before birth. Something goes wrong in the development of a child’s brain, but parents or teachers might not notice it for some years.
One cause might be a combination of a gene the child inherited mixed with something toxic in the environment, even before birth.
About 15% of children with ASD have changes in their genes called mutations. There are more than 61 genes and many more gene interactions that can change the way a child’s brain grows. These changes put the children at risk. Here’s how that works: As the unborn baby develops, altered genes might not cause any problem until something else happens. That something could be a virus, a very low birth weight, the mother’s poor health, or certain birth problems. The baby’s brain may stop developing the way it should. When something keeps a person from learning and growing the way they should, it is called a developmental disorder. Autism is such a disorder.
Because of a shocking number of children diagnosed with autism in recent years, a lot of money has been spent on research. That research has found some things that do not cause it.
You do not get autism from:
- Childhood vaccinations. Multiple carefully conducted studies of immunized children did not find a link to autism.
- Poor parenting. Parents are not to blame.
- Another person. You cannot get it by being with someone who has autism.
Who develops ASD?
Siblings of children with autism are more likely to develop it than others. That might be because they share many of the same genes. Boys are far more likely to show ASD than girls. This may be because girls are better at imitating others and masking their ASD.
Can it be treated or cured?
It cannot be cured, but there are many ways a person with autism can be taught to deal with the world by developing strengths to beat weaknesses. Some people with autism will need a great deal of help. Others will not.
There are drugs to help a child control their actions and calm their fears. There are teaching aids, behavioral aids, even cell phone apps specially designed for people with autism to help them learn, communicate, and participate as best they can in the family, classroom, and community.
Parents of children with ASD need special training in ways they can help their child at home and at school. With support from experts in the health and teaching communities, they will learn how to support their child and steer the complex world of benefits, services, and resources that can help the child grow.
How is autism diagnosed?
Autism spectrum disorder is diagnosed by a doctor including a neurologist, psychologist, or psychiatrist. There is no blood test, MRI, or X-ray for autism. However, there are standardized assessments that are used as part of a comprehensive evaluation, including the Autism Diagnosis Interview (ADI-R), Autism Diagnostic Observation Schedule (ADOS), Childhood Autism Rating Scale (CARS), and/or the Gilliam Autism Rating Scale (GARS-2).
The doctor will ask many questions about the mother’s own health history and the child’s. Details about the mother’s pregnancy and the child’s birth are both important to share with the doctor. The doctor will want to watch the child for a while to see how they interacts with a stranger, with toys, and other objects around them. He will also check for unusual behavior, including indications of fear, or sounds the child makes, over and over. The doctor will also ask the parents, teachers, and the child to describe the child’s strengths and challenges. Does the child make eye contact? Do they read at grade level? Are they afraid of certain noise?
With all of this information, the doctor will make a diagnosis that matches the characteristics of a point on the autism spectrum. Or they might decide to test the child for something else. The diagnosis will describe where the child falls on the spectrum in each of the major categories— social interaction and communication, medical problems, intellectual and repetitive behaviors.
What can be done to help a child with autism?
Every situation is different, but a child on the autism spectrum can be helped by the combined eff orts of parents, the health care community, the school district, and the state.
With an early start, a child with autism can make great strides. People dedicated to working with children with autism use special teaching tools, speech therapy, work therapy, physical therapy, and personal help. A warm and supportive home and family life will help. So will a community willing to accept all children’s challenges and strengths.
Another effective therapy is Applied Behavior Analysis or ABA. The ABA lead therapist will develop a treatment plan based on the strengths, weaknesses, interests and abilities of your particular child to narrow the gap between their current functioning and those of similar-aged peers. Usually delivered in the home, the therapist will work with your child to develop their skills and reduce behaviors that may be harmful to themselves or others, disruptive to others or make them stand out more. These therapists known as behavior analysts or BCBAs (Board Certified Behavior Analysts) are specially trained to change the environment
in certain ways to help achieve your child’s goals. They will also work with parents to learn these same techniques to speed up the process. Another important therapy is the use of social skills groups in which children can learn to interact more appropriately with others of similar ages.
Sometimes, people with ASD may be prescribed specific drugs to help lower repetitive or risky behaviors, seizures, or sadness that lasts. A person with autism may have stomach problems requiring drugs or a special diet.
Can a person with autism spectrum disorder live an independent adult life?
Many can. In fact, there are millions of adults who have learned to communicate in unique ways, and support themselves through jobs that match their strengths.
Every child on the autism spectrum has a different set of strengths and challenges. Many have normal intelligence. Some even have special abilities doing better than most in art, music, mechanics, or learned skills. Others (between 25% and 40%) have intellectual as well as communication disabilities.
These children may not be able to gain the complex skills a person needs to live as independent adults. They may need to live at home, in supervised group living situations, or in residential centers designed for disabled adults.
Autism Spectrum Disorder: What Is It?
Autism—also called autism spectrum disorder (ASD)—is in the news and on the minds of many parents, but what is it?
This elusive word describes a condition a person can be born with that makes it hard for him to learn to speak or to do basic skills. You cannot see or prove autism with the usual medical tests, such as blood tests or X-rays, but a doctor trained in testing for ASD will know if a child has it.
Here is what it might be like to have autism spectrum disorder:
- Difficulties understanding others, what they sayand what they mean
- Notbeingabletoexpresswantsandneedsinaneffective way
- Over or under sensitive to certain sounds, lights,touch, taste and smell
- Heightened threshold to pain
- Problems recognizing dangerous situations
- Feeling overwhelmed
Autism interferes with the way a child learns to talk, communicate and behave. It has nothing to do with how smart a child is, but it gets in the way of the development of intelligence because it prevents learning. As a child grows, this disabling condition does not go away. But with the help of the child’s family, special educators and others trained to work with children with ASD, he may be able to learn how to go around some of the obstacles autism puts in his path.
Parents usually see the signs of autism first, but doctors and teachers also might notice something iswrong with the way a young child develops. They are late learning to walk.Or,does no trespond when their mother speaks to them. Even with a teacher giving special attention in school, they cannot seem to learn how to write or read.
About 17 percent of U.S. children are born with some disability that affects the way they learn and/or grow. About 2 percent are born with very serious problems, such as intellectual disability, cerebral palsy, hearing loss or severely impaired vision. Others start life with learning disabilities, attention-deficit/hyperactivity disorder or autism. Some have several disabilities.
A spectrum disorder?
Autism is called a spectrum disorder because it is different for everyone who has it. Some people have mild symptoms and some have severe ones, but all are related to language, communication and unusual behaviors.
One child might not be able to speak and another has difficulty knowing how to act around people. A child with very few problems might do well with help but another might have many, many difficulties. Most people with autism spectrum disorder fall somewhere between the two extremes, with their own combination of strengths and challenges ranging from mild to very troublesome.
In fact, experts in the field say if you look at 100 children with autism, you will see 100 different combinations of autism symptoms.
“I remind my students that we all have strengths and needs,” explains Skott Freedman, a speech pathologist specializing in work with children on the autism spectrum. Some people cannot sing, he says. Others have trouble with math. People with ASD have challenges learning language and social skills, but often find other ways to interact with the world around them.
Diagnosing and describing autism
Until recently, doctors pigeon-holed people with autism into one of several categories. That practice ended in 2013, when new diagnostic guidelines were released.
Today, a person’s strengths and challenges are included in the diagnosis. Anyone with symptoms and patterns of autism is on the autism spectrum or has autism spectrum disorder (ASD). In addition, they are described by how they function socially, intellectually and verbally.
For example, a child may be diagnosed as being on the autism spectrum with normal IQ and low social interaction, or on the autism spectrum with high verbal skills and obsessive symptoms.
The descriptive parts of the diagnosis come from interviews with the child, the parents, teachers and others. The doctor observes and tests the child, then takes everything into consideration to make an accurate diagnosis.
No one knows how many people in the United States have autism. The latest estimates are one in 59 children according to the CDC.
In the last 20 years, the number of new cases of autism has jumped dramatically. This may be because more children are being born with the disability, or because more are being diagnosed. Heightened awareness brought about by the media encourages parents to get their children tested if they spot symptoms.
Most children with autism spectrum disorder start showing symptoms by the time they are 18 months old. They may seem shy, or a little slow to speak or interact with others. Some develop normally for a few years, and then start to change. They may lose many words and motor skills they once had.
Warning signs
Every child with autism is different, but all have difficulties with language, interactions with others, or behavior. Be aware, if your child:
- Does not start talking until after age 2
- Says words but does not seem to understand what they mean
- Speaks with an unusual tone or rhythm
- Does not respond to his name
- Does not want to cuddle
- Pushes people away
- Prefers to play alone
- Does not make eye contact
- Moves constantly
- Is very sensitive to light, sound or touch, but not to pain
- Is easily distracted
- Cannot stand a change in routine
- Rocks, spins, flails his hands or does other repetitive movements
If you believe your baby is not developing the way he should, talk to your doctor. Tell your doctor what worries you have about your child.
The doctor will spend time with them and make notes on what they say and do. Doctors use a checklist to help them decide if she is likely to have ASD and, if so, what type. Then, your doctor may send you to a medical center or specialist for a more detailed examination.
If your child is diagnosed with autism, your school system will want to do its own tests to help them decide how best to help your child in the school setting. These tests will not involve anything painful to your child.
Since ASD is a recognized disability, schools must provide educational special services to children who have it. There are many new ways to teach and materials to use for children with ASD, including videos, books and cell phone apps. Some school districts have set up special training programs for teens and young adults with autism to help them learn the skills they will need to live on their own.
It is hard on the parents and family when they have a child with ASD. They need a lot of support. Local recreation departments and religious organizations are beginning to restructure some of their programs to make themselves “autism friendly.” The more we learn about this disorder, the more ways we will find to support the families and individuals dealing with it.
Resources
Individuals with Disabilities Education Act (IDEA):
National Institute of Child Health and Human Development:
Autism Speaks:
By Paula Hartman Cohen
©2012-2023 Carelon Behavioral Health
Creating a Strong Marriage or Partnership When Your Child Has Autism
Summary
- Support and understand your partner.
- Take advantage of resources for the child and yourself.
- Manage your expectations.
Being a parent changes the dynamics between any couple. Parenting a child with autism changes the relationship even more.
A child with autism has trouble communicating with the world around him. According to the group Autism Speaks, autism can be identified “by challenges with social skills, repetitive behaviors, speech and nonverbal communication.” Still, children with autism also have “unique strengths and differences.”
Jessica and Jeremy Long have two children. One is a child with autism. Jessica describes their family life as “tough but manageable.” Just like any marriage, there are ways to keep the relationship healthy.
Lean on each other
When parents learn of an autism diagnosis for their child, they may feel sadness. People handle the news differently. Try not to judge each other. Work together to become educated about your child’s needs.
Just like with any child, accidents happen. Most parents have a story that starts “I only looked away for a second.” The same is true for the Longs. On Jessica’s watch, her son “eloped” (left an area without permission or without letting someone know). It took several hours for the police to find him. Jessica was filled with guilt, but Jeremy didn’t blame her. When he was in charge, their son climbed out the window. Jessica didn’t blame Jeremy. She says, “I think being understanding and clinging to each other through the storms has been really key to our relationship.”
Remember that you and your partner are not alone
The Longs are both teachers. Their careers helped because they have seen the support offered in schools. Schools have people trained to help children with special needs. Jessica said most schools have “programs that are effective in training people with severe special needs to be vital contributors to the community.” Make use of programs, therapists, and aides offered by your child’s school or community.
Also, seek counseling. Going as a couple or alone, it helps to have your feelings heard. You can use the time to brainstorm solutions to troubles. Remember that all couples have different parenting styles. Talk about your thoughts on discipline, goals, finances, and the future. Cut each other slack when things don’t go as planned. Counseling is useful if you and your partner have a hard time communicating or feel tense with each other.
If you decide divorce is the best option for your family, counseling can help you learn how to co-parent separately. It can also help your child depending on his age and communication level.
Make use of family and friends. But be reasonable in your expectations. They may not know how to interact with or care for your child. Offer ways they can learn. Tell them about books they can read. Have them help with specific tasks under your supervision first. You don’t have to feel like you are an encyclopedia for them. Suggest they do research to learn more about autism. It might be better to find a caretaker trained in special needs, if that is an option.
There are also online communities and social media pages that can connect you to families of children with autism who share your struggles.
Manage your expectations
Jessica says, “I think it’s key that parents of children with autism let go of expectations, especially typical timelines.” She adds, “Trying to ‘catch your child up’ and putting pressure on your child and yourself to meet these random deadlines is brutal on a relationship. It’s hard on your mental wellness (as well as your child’s).”
The Longs live by their calendar. Still, they have a hard time making all the appointments their son could have. They have learned to do the best they can. Early interventions and therapies are important. So is taking time to be together as a family.
Jessica adds, “While it is important to seek and comply with all early intervention work, it will take time. Your kid will always be a little different. Love her twice as much. She is probably trying 10 times as hard to do half as much as the average kid. He needs your love and support more than anything any teacher, doctor, or specialist can give him.”
Resources
“Explaining Autism,” Sesame Street in Communities
“Divorce, Custody, and ASD,” Car Autism Roadmap
By Jennifer Brick
Source: Jessica Long, M.Ed.; “Autism–It’s a Family Thing” by Chantal Sicile-Kira, www.psychologytoday.com/blog/the-autism-advocate/201003/autism-its-family-thing; “Frequently Asked Questions,” Autism Speaks, www.autismspeaks.org/what-autism/faq
Diagnosing Autism Spectrum Disorder
Summary
- People with autism spectrum disorder can have many different conditions.
- Diagnosis involves an interview and observation.
- Early diagnosis and treatment is important.
Autism spectrum disorder (ASD), or autism, is an umbrella term for a number of conditions that get in the way of a person’s ability to communicate and develop social skills. Some people have only minor problems that might not be seen. Others are isolated by many things that keep them from interacting with other people. Most people fall somewhere in between.
People with autism have their own unique set of strengths and challenges. Whatever the mixture is, it will fall somewhere on what is called the autism spectrum. As a short cut, most people use the word autism to describe all the points on the spectrum. Doctors, therapists, and teachers are more specific. They use a word that better describes the nature of a person’s condition.
Is all autism the same?
No, people with autism spectrum disorder are as different as people with other conditions, such as headaches. Some are severely disabled and others are not. Some have other medical problems at the same time. Some have almost no symptoms.
Until recently, people—mostly children—were diagnosed with one of several different types of autism, including Asperger syndrome and pervasive developmental disorder-not otherwise specified (PDD-NOS). Now, the term autism is used to describe everyone with the disorder, along with descriptions of specific challenges or abilities they may have.
To diagnose your child, a doctor will ask you many questions and will observe him while he looks for clues related to his:
- Social interaction and communication with others, both verbal and non-verbal. Can he carry on a conversation with another person? Does she make eye contact? Is he interested in relating to other people?
- Medical problems. Does he have gastrointestinal problems or epileptic seizures?
- Intellectual behaviors. Does she show no interest in reading or read at the level expected for her age?
- Repetitive behaviors. Does your child rock back and forth or repeat a pattern of movements?
With input from the child, parents and teachers, the doctor will determine the child’s level within each diagnostic area. For example, she may be diagnosed as having autism with gastrointestinal problems and high intellectual abilities. Or perhaps, on the autism spectrum with severe repetitive behaviors and low social interaction.
This detailed diagnosis will help professionals design the best treatment program for your child. It will also give you the information you need to decide what you can do as a parent to help your child.
Parents always are checking to see if their child is meeting the milestones that are part of growing up. They compare their own child against another or standards spelled out in parent guidelines. Most often, children walk and talk and learn to feed themselves at roughly the same time. A few months difference isn’t anything to worry about. But anything above that, it is cause for worry.
If you are worried about how your child speaks or does not speak, plays or is not interested in playing with others, learns or does not learn, do not wait to ask a doctor. Contact one for a referral to a child development specialist, or ask your local school system to test your child.
Early intervention has been shown to make a huge difference in the way a child with autism grows.
If you are an adult and think you may have problems stemming from undiagnosed autism, talk to your doctor and ask for a referral to the right person.
How is it diagnosed?
The examination for autism is not much different for children as it is for adults. It involves:
- An interview: What brings you here?
- Observation: How does the person relate one on one, in a small group or in a crowd?
- A health history: Bring your own notes and whatever else you have.
- A history of a person’s firsts: Make a list of when she spoke her first words, took her first steps or reached other milestones.
There are no blood tests or X-rays to pinpoint a spot on the autism spectrum. With the help of a complete checklist, a doctor will use teaching, experience and good sense to get to the root of the problem.
Treatment and training
Treatment will vary, depending on the diagnosis and how bad the disability.
It may include:
- Special education
- Physical therapy
- Occupational therapy
- Speech therapy
- Drugs to lower anxiety and disruptive behavior
- Applied Behavior Analysis
The best thing you can do as a parent is to get your child evaluated and treated early. Do not wait until the child is school age.
You can ask for a free evaluation from your state’s early childhood education system, to find out if your child qualifies for services. This is sometimes called a Child Find evaluation. You do not need a doctor’s diagnosis or referral to make this call.
By Paula Hartman Cohen
©2012-2021 Carelon Behavioral Health
Source: Asha Asher, M.A., pediatric occupational therapist and special education teacher, Sycamore Community Schools, Cincinnati, OH; Leandra N. Berry, Ph.D., pediatric neuropsychologist, Autism Center, Texas Childrenメs Hospital, Houston, TX; Skott Freedman, Ph.D., child language development and disorders specialist, Ithaca College, Ithaca, NY; Areva Martin, Esq., attorney, advocate for children with autism, and author of The Everyday Advocate: How to Stand Up for Your Autistic Child, Los Angeles, CA; Sherry Sancibrian, M.S., associate professor and program director Speech-Language Pathology and an investigator for the Burkhart Center at the College of Education, Health Sciences Center School of Allied Health Sciences, Texas Tech University, Lubbock, TX
How Does a Child With Autism Spectrum Disorder Learn?
Summary
- Create a safe and supportive environment.
- Be creative in the ways you communicate with your child.
- Be a strong advocate for your child’s needs and education.
A flurry of research and innovation in special education has found ways to help children learn, in spite of autism. There are many effective techniques specially trained teachers and therapists can use to reach and teach your child who has autism spectrum disorder (ASD), sometimes just called autism.
Try not to think of your child as being behind in their education because they cannot learn the same way other children do. If they are old enough to go to school, you know by now that they have their own ways to communicate and learn, and there is no reason to think they are inferior to anyone else’s.
Children with ASD learn best with:
- A program built on their strengths
- Visual cues
- Individual attention in a group setting
- A focus on what interests them
- A warm, supportive and safe environment
- A teaching team that includes not only a special education teacher but other specialists
- An individualized education plan (IEP) designed by knowledgeable and caring individuals.
An IEP comes out of a team meeting where school administrators, teachers parents and others involved with your child, plan for the future. This meeting is held before your child begins school and the document is required. It must be reviewed and renewed on a regular basis, as they get older.
Your child will be taught by a team of people specially trained to teach children with special needs. The size of the team may vary, but it probably will include a physical therapist, speech therapist and occupational therapist.
Occupational therapist Asha Asher sees her job as one that helps a person with autism spectrum disorder live life to the fullest. “I think beyond what the child cannot do and use a strength-based approach,” she says. “I say to myself: I see you have autism and cannot control your mouth or hands. Let’s help develop what’s right with you and take it from there.”
Using this approach, she accentuates the positive and eliminates the negative, to quote an old saying. Here’s how it works:
If a child does not speak or hear well, give the child a package of cards with pictures depicting whatever it is you are trying to teach. These visual cues can include pictures of objects, facial expressions or even situations a child could find themself in, like an argument. They can use these cards to express themself to the teacher and others, when they cannot find the words to use.
Speech therapist Skott Freedman says it’s important to keep a child’s stress level as low as possible, to allow them to learn. “Honor their nonverbal preferences if your child does not want to speak,” Freedman says. “We can use pictures, sign language or a computer. Whatever you do, don’t force the child to do something that’s very difficult and stressful.”
What works?
Here are a few successful techniques and materials special education teachers and therapists use to help children with autism learn:
- Picture Exchange Communication System (PECS): This set of cards contain pictures and words a child can use to communicate their needs.
- Social stories: These are stories about real life situations. They help a child understand what is going on and how to respond to it. For example, one story might be about things that make a child mad, and how they might deal with their feelings. Social stories are available from publishers, or you can write your own to make it specific to your child.
- Tablet computers: Children with autism spectrum disorder might have trouble holding a pen, but can use a computer, especially a tablet that lets them point to words or pictures.
- The Internet: Parents can find a wealth of materials designed for children with autism on the internet. There is an ever expanding collection of programs and apps designed to support differences in learning.
- Routines: Patterns and routines help children reduce stress. When a child is relaxed, they are more likely to learn. Teachers and parents set up skill routines for children to practice and learn how to brush their teeth, get dressed and ready for school, or accomplish any daily skill set.
How can a parent help?
- Get to know your child’s strengths and interests. You know them best. Take the time to learn what makes them tick.
- Be a partner with your child’s learning team. Work with your child’s teacher, speech therapist, occupational therapist, physical therapist and anyone else who provides services through the school. Be a good coordinator to get the best result.
- Create a predictable routine, but also a Plan B for unexpected change. To make the transition easier for the child, have a signal like a bell or a picture that lets the child know change is coming.
- Create a safe zone and calm zone for learning. Play music or read a book filled with rhyming words. Find a special part of the house or room where the child can retreat when they are overwhelmed. Respect your child’s need to withdraw and come back.
- Use visuals. Some kids do better with pictures or line drawings, than words. Use them to help your child set up a daily routine.
- Create opportunities for success in the short run and in the long term. This is good for mental health. Life is very hard for them. Give them every opportunity to build self-esteem.
- Look at every behavior as a piece of communication. If a child pushes or drops something, they are trying to tell you something. What is it? Learn to read your child’s signals.
- Give yourself a break. Every family member needs a balance of work, rest and play, including a parent! If you need a respite from the difficult job of caring for someone with autism, ask friends, other family members or your support network to help out. If you do not have a support network, build one.
- Be diligent as your child’s advocate. You are your child’s main contact with those who will help them grow and develop. You need to learn as much as you can about your child’s needs, ask questions and learn how to advocate for your child. Do not be afraid of being a pest. If you want answers about your child’s treatment or education, ask. If you have information you think might benefit their education, speak up.
- Prepare for your child’s IEP. Take it seriously and get involved. Keep notes on significant changes—for the better or worse—so you can discuss them at the next meeting. Bring a list of milestones, preferences or practices you know work for your child. If your child prefers to wear a vest to calm himself down when he gets scared, tell people at the IEP. If you feel they are not getting the attention they need in the classroom, bring that up at the next IEP. Your child is counting on you to guide them through a very complex system of services.
By Paula Hartman Cohen
©2012-2021 Carelon Behavioral Health
Source: Asha Asher, M.A., pediatric occupational therapist and special education teacher, Sycamore Community Schools, Cincinnati, OH; Skott Freedman, Ph.D., child language development and disorders specialist, Ithaca College, Ithaca, NY; Areva Martin, Esq., attorney, advocate for children with autism and author of The Everyday Advocate: How to Stand Up for Your Autistic Child, Los Angeles, CA; Sherry Sancibrian, M.S., associate professor and program director Speech-Language Pathology and an investigator for the Burkhart Center at the College of Education, Health Sciences Center School of Allied Health Sciences, Texas Tech University, Lubbock, TX
Living With Autism Spectrum Disorder in the Family
Summary
You can help your family live with autism spectrum disorder by:
- Giving all your children the love and support they need
- Not ignoring your own or your partner’s needs
The dynamics of all families are complex, but one that includes a child with a disability is even more complicated. If the disability determines how that child learns, acts and communicates—as autism spectrum disorder (ASD) does—life under that roof can be extremely complicated.
Children with autism require an enormous amount of time and energy from parents. You have days when you are not sure you can keep going. As they grow older, your child on the autism spectrum will make many demands on your time. Some things will get easier and others will get harder. How you and your family deal with your child’s disability depends on so many things. Those can include your other children, your family’s financial situation, where you live and how you handle the reality of autism, for example.
The best thing you can do for all of your children is make it clear you accept and understand the responsibilities that go along with raising a disabled child. The way you treat them will set the tone for the whole family to follow when they deal with them and with each other. If you want your other children to be patient, tolerant and compassionate toward their sibling with autism, you must teach them by example.
Make it clear that you love the child with autism, that you are willing to do all you can to make their life the best it can be and your other children will love them too. You will win their respect along the way. But, if you come across as disappointed, disinterested or overwhelmed by the responsibility, don’t be surprised if they adopt the same attitudes.
Help your other kids
- Talk to them. Answer their questions in an age-appropriate way. As they get older, share more and more information. Let them feel comfortable coming to you for answers.
- Pass around the praise and attention. As your child with ASD develops, you will praise them every time they reach even the smallest milestone. Don’t forget to praise your other children too. Recognize them individually for all the wonderful things they do.
- Teach them how to communicate with and interact with their disabled sibling. They need guidance. As you learn, teach them what you know about helping their sibling.
- Let them know they will be safe when their sibling with autism is disruptive. Children on the autism spectrum can have very dramatic meltdowns. Make sure other children know how to handle these events, safely.
- Spend time alone with them. All children need one-on-one time with parents. Set aside a time every day and every week to hang out with your other children, or to do special things with them.
- Understand all of your children’s need for support. Those without autism need peer support and advice from people in the field on many aspects of autism spectrum disorder, including strategies for dealing with questions and comments people make about their brother. Look into workshops, support groups and blogs for your kids. They are sponsored by a number of advocacy organizations.
Help yourself and your spouse or partner
- Share the load. Divide family chores and responsibilities as fairly as possible. Be realistic but fair when you talk about how much responsibility you can take on. There is no reason everything should fall on one parent. Take advantage of each parent’s strengths, time and experience.
- Set aside time for yourself and for each other. Children with disabilities, especially autism, can be hard on marriages. You do your best with your child; you also need to do the best to keep your relationship strong.
- Don’t be too proud to ask for help. You probably have friends, family, neighbors and supporting organizations near you who are ready and willing to help. Let them.
- Don’t expect perfection in your home, yourself or your kids. You cannot be a superhero. Things will get chaotic. Ease up on your expectations for everyone involved, and go with the flow. Only the basics—food, rest, clothes, comfort, love and encouragement—are important. All the rest is extra.
- Talk to other parents like yourself. Many parents of disabled children feel isolated or embarrassed. Once you start looking around, you will be surprised at how many other parents you will find who face similar challenges.
- Educate yourself on autism resources. Many states require health care insurers to provide coverage for autism therapy and treatments. Find out what resources are available in your state and how to access them. You will be your child’s advocate for many years, so keep up on new treatments, laws and resources. Subscribe to state and advocacy organization updates.
- Plan for the future. Both parents need to think ahead and do long-term planning. Name potential guardians. Write a will. Set aside funds for education. Find resources to help your child with autism, as they age. Get advice from attorneys, financial planners or insurance professionals on how to make sure your children get the care they need, even if one or both of you are not there to provide it.
- Set aside time for a spiritual life. Expect tough days. Help your family build a spiritual base to fall back on when they need it.
By Paula Hartman Cohen
©2012-2023 Carelon Behavioral Health
Parenting a Child Who Has Autism Spectrum Disorder
Summary
Parents of children with autism spectrum disorder must:
- Know their child’s strengths and challenges
- Be their child’s No. 1 advocate
- Get support and find resources
You will never forget the day you were told your child has an autism spectrum disorder (ASD). Your heart probably sank, while you hoped you were just having a bad dream.
Most parents have to go through an entire grieving cycle when they get bad news. Their child will not be what they expected him to be. She will not grow into the woman they thought she would be.
After a period of shock, sadness, anger, denial and isolation, parents usually come to a healthy acceptance of the reality of the situation. They have a special needs child. It’s time to get to work learning how to raise a child who does not fit the mold used in most parenting guides. Your child is not typical and you will not be a typical parent.
Until you are at peace with that concept, you will not accomplish much that helps your son or daughter. To find that peace, discuss the situation and share your feelings with someone you trust. Spend time healing before you jump, headfirst, into the demanding—and rewarding—job of raising a child with special needs.
You can prepare
Here are a few things you need to learn to do:
- Take care of the caregiver. You must pace yourself in everything you do. Be sure to leave time for your needs, too. If you are not healthy, you will not be able to help anyone.
- Do not ignore others in the family. It takes a lot of time and energy to raise a special needs child and that can take a toll on siblings and parents’ relationships. Do not let autism spectrum disorder consume your life.
- Sketch out a plan. You don’t need to know what you will do every day, but work out a basic schedule for you and your family to follow for the next few months. Divide responsibilities and talk it over so everyone will know what to expect. You will not have time for misunderstandings or missed appointments when you get busy.
- Line up resources. Do some digging to find out what your town, school system, state and local affiliates of related organizations have to offer. Read, make calls or write letters. Attend meetings and pick up materials. Go to workshops and seminars designed for parents like you.
- Get support. Join a support group for parents of children with autism spectrum disorder or with special needs.
- Learn as much as you can about autism spectrum disorder and how to advocate for your child.
Two important things to do
Every child on the autism spectrum has a different set of strengths and challenges. You will need to work with your pediatrician, school system and your child’s care team to design:
- An individualized education plan, or IEP, for school
- A parenting plan to complement what is done at school with the love and care you give any child of your own
You know your child better than anyone else. Study him to learn what works and does not work under the normal ups and downs of daily life.
Help your child at home
Here are a few ways you can help your child with autism, at home:
- Learn how your child communicates best. It may be with pictures, or by pointing and not speaking. Even disruptive behavior is a form of communication. What is the child trying to tell you?
- Reduce the chances of overstimulation. Learn what overwhelms her. Lightning? Loud noises? Certain fabrics? Get rid of anything that interferes with her daily life.
- Try to keep a routine. If you can’t, help the child adjust to change. The most common stressors on a child are those things that change a routine. Someone is late. School is cancelled. A new person is in the house. If you see a change coming, prepare the child in advance. Give him a time and way to adjust to the next step.
- Make the home environment safe and calm. Your daughter needs a place to go when she is upset. Set aside a room or part of a room where she can go to get herself together. Give her objects that reassure her, such as something made of fleece, stuffed animals or other soft or cuddly things. Reduce noises or install something that produces a noise she likes, such as music, nature sounds or even a light hum.
- Honor nonverbal communication if your child does not want to speak. Use pictures, sign language or a computer to communicate, if that works.
- Set realistic expectations for yourself and your child. You can reduce your child’s frustration as well as your own if you accept the limitations on both of you. Remember that your kid needs a warm and loving parent, not a superhero.
- Autism educator Skott Freedman says parents do best when they have made peace with their situation: “You have lost something,” he tells them. “You’ve lost the idea your child will be a certain way. You’ll do best as a parent when you can say to yourself, ‘some things will change and some won’t and I’m all right with that.’”
- Work together with your child’s team, and reinforce their successes at home.
- Help your child build memories. Teach him sequences and connections in daily life, family life and social life. Children with ASD often find it easy to learn about whatever interests them. Relate memories to something he is already interested in, to help him remember.
Most of all, remember this: Your child with autism spectrum disorder deserves the same love and attention you give any of your children. He may not grow up the way you expected, but he will accomplish many things, with your help. His life will not be easy but, over the years, he will make you very proud. But, today, give yourself a pat on the back, as his parent.
By Paula Hartman Cohen
©2012-2021 Carelon Behavioral Health
Source: Asha Asher, M.A., pediatric occupational therapist and special education teacher, Sycamore Community Schools, Cincinnati, OH; Leandra N. Berry, Ph.D., pediatric neuropsychologist, Autism Center, Texas Children’s Hospital, Houston, TX; Skott Freedman, Ph.D., child language development and disorders specialist, Ithaca College, Ithaca, NY; Areva Martin, Esq., attorney, advocate for children with autism, and author of The Everyday Advocate: How to Stand Up for Your Autistic Child, Los Angeles, CA
Preparing for Adulthood With Autism Spectrum Disorder
Summary
With your help and lots of special training, your child may be able to:
- Train for a job
- Build relationships with others
- Take on responsibilities
Like eye color, autism spectrum disorder (ASD) does not go away as a person gets older. Unlike eye color, we cannot see or point to it, but we can see what autism does to a child as they develop. It makes it hard for them to learn the basic skills they need to be part of the world around them. But ASD—sometimes just called autism—does not rob them of their intelligence, their creativity or their desire to love and be loved.
Through training and hard work, many children with autism are able to get around aspects of their disability or to reduce its intensity. Over the years, teachers, therapists and parents help them build their own bank of knowledge and skills, so they can lead productive adult lives.
As your child ages, they need to learn how to take care of themself, deal with the world,and support themself. They will need all the love and support you can give them as a parent. They will also need teachers and doctors who have experience with developmental disabilities. Some of their services will be costly.
It costs society about $3 million to educate and care for a person with autism spectrum disorder, over a lifetime. School systems, health insurers and state agencies pay most of the costs. Parents make up the difference.
Your health insurance probably will cover all or some of the costs for physical, speech and behavior therapy. Your state—through your school district and social service agencies—provides educational services. But, you may want them to have something your area does not offer. Contact the agency in your state that deals with disabilities for information on what is available. Some states offer more services than others.
Start basic life skills early
Even at age 4, your child with autism can start learning how to take care of themself. All young kids need to learn how to:
- Dress
- Wash themselves
- Brush their teeth and hair
- Be polite to others
When you let them help you make sandwiches, change the sheets and run the washing machine, you are preparing them for adulthood. Make a point of including them in household chores. Everything they see or do as a youngster will prepare them for life as an adult.
When it is time for schooling, you and members of your child’s support team will produce an individualized education plan (IEP). This document spells out the services they will get, and the goals they are expected to reach. Remember, you are the expert on your own child. If you do not get an IEP you can live with, speak up.
Social skills are essential
Your child with ASD will build social skills at home and in school. Sometimes they will get group lessons; other times, teachers will work with them one-on-one.
Because it is so important for children with autism to learn how to live in society, individual services may not be the best choice. Not only do they need to know how to fit into society, your child needs to know what to do when they are viewed as an outsider. They are different from others in some ways. But they have the same need to fit in with peers that all children have.
When they reach the teen years, they will have not only the usual teen problems, but they might be picked on for having ASD. Keep a close eye on their welfare at school and watch out for bullies. If you suspect bullying, act quickly on your child’s behalf.
The media has done a good job raising attention for developmental disabilities, which might be why many organizations and houses of worship have tailored programs for kids with special needs. Today, you can find bar mitzvahs, communions and confirmations designed for youngsters with autism. Some areas also have special sports teams, camps and clubs. Activities like these help children build self-esteem and feel like they belong.
Getting ready to be an adult
Don’t assume your child will never be able to live on their own or hold down a job. Many adults with autism are quite successful at work. You probably interact with some every day without knowing it.
Can your child live on their own? Maybe. If not, they can stay at home or live in a supervised group home. Some people with low levels of autism spectrum disorder are able to build adult relationships and marry, as tough as that might sound.
People with autism often go into careers that do not involve working directly with others. They are computer engineers or technicians. They work in warehouses or stockrooms, or they input data, compile information and do research. Depending on their disability, they may edit books, grind optical lenses or keep HVAC systems operating.
By the time your child is 15, you need a long-term plan for their future based on their interests and abilities. State agencies provide services until a child is 21, which only leaves a few years for them to get the training they need before they transition from school to the adult world.
Many states are developing savings plans called ABLE accounts. They are similar to a 401(k) pre-tax account, which allows parents to save money for their child which can be used when they are an adult.
If you think college is a possibility, look into programs for special needs students as early as possible. Some community colleges work with local businesses to train people specifically for their jobs. Grocery chains, mail order houses, libraries and printers, for example, often ask schools to train special needs people to work for them. At the same time, they have to train their staff to work with people disabilities, to make it a winning combination.
We know there is an exception to every rule, which is why there are no rules when it comes to ASD.
Temple Grandin was diagnosed with autism spectrum disorder at age 3, but went on to study psychology and animal science in college, then earned a doctorate degree in animal science. She became a professor of animal science at Colorado State University. At 18, she invented a simple machine that is used today to help people overcome anxiety. You may be familiar with her “hug” machine. Temple Grandin’s story has been told many times in the media, even in a made-for-television film. She uses her experience plus her science background to help parents understand their children with autism, on her website.
“Every child has strengths,” says educator and speech pathologist Skott Freedman. “When it comes to children with autism, we often put labels on them that point only to their challenges. That’s not helpful and is certainly not the whole story.”
By Paula Hartman Cohen
©2012-2021 Carelon Behavioral Health
Source: Asha Asher, M.A., pediatric occupational therapist and special education teacher, Sycamore Community Schools, Cincinnati, OH; Leandra N. Berry, Ph.D., pediatric neuropsychologist, Autism Center, Texas Childrenメs Hospital, Houston, TX; Skott Freedman, Ph.D., child language development and disorders specialist, Ithaca College, Ithaca, NY; Areva Martin, Esq., attorney, advocate for children with autism, and author of The Everyday Advocate: How to Stand Up for Your Autistic Child, Los Angeles, CA; Sherry Sancibrian, M.S., associate professor and program director Speech-Language Pathology and an investigator for the Burkhart Center at the College of Education, Health Sciences Center School of Allied Health Sciences, Texas Tech University, Lubbock, TX
Recognizing Signs of Autism Spectrum Disorder
How will I know if my child has autism spectrum disorder?
Most children start showing signs of autism spectrum disorder between the age of 18 months and three years. Health care professionals urge parents to be on the lookout for possible signs of autism at any age. The earlier, the better, when it comes to helping a child with a development problem.
If there is a chance a child is not developing normally, parents should try to get a diagnosis and treatment as early as possible.
Skott Freedman, a speech pathologist specializing in treating people on the autism spectrum, is a dedicated believer in starting a treatment program early in toddlerhood. “It makes a big difference in the long run,” he says. “The average age of diagnosis is 4.5 years. The ideal age is 18-20 months, before the child has a chance to develop a lot of bad habits.”
Here are some symptoms to watch for:
- Does not respond to his name
- Shows poor or no eye contact with others. No peek-a-boos or return smiles
- Little or no interest in interacting with adults or other children
- Repetitive behavior, such as rocking, running in circles or getting stuck on a word
- Uses few or no complete words by age two
- Makes odd physical movements, such as arm flailing or walking on tiptoes
- Has severe temper tantrums or episodes of fearfulness; Afraid of storms or crowds
- Has little interest in playing with toys or games
- Fixation on a single item, sound or movement
- Super sensitivity to temperature, sound or light; Does not want to wear shoes or clothes; Can’t stand certain lights or sounds
- Needs to have things placed in a certain order
- Cannot handle any change in routine
These are signs that a child may have an underlying physical problem getting in the way of learning language and social skills. With a lot of help from parents and a child’s school system and community, a child on the autism spectrum can learn how to go around some of these physical problems. This will take time and energy, but the reward can be great.
“The differences we see in children who get intervention as toddlers or preschoolers are immense,” says speech pathologist Sherry Sancibrian. “It’s so important to start working with autistic children immediately.”
She tells families that suspect their child has autism spectrum disorder, to look at a trusted website for information, including those listed below. They will answer many of your questions and help you decide what to do next.
“I worry that autism is a little like cancer to the public,” Sancibrian says. “People don’t want to think about it. But, it’s so important to act quickly. Get help as soon as you think there might be a problem.” She warns, “You have to be willing to reach out for help from all the resources there are available. Autism is not something you can manage on your own.” Early intervention leads to better outcomes.
If you decide to seek help, start observing your child carefully and take notes on what you see. Mark developmental milestones (first steps, first words) on your calendar or keep a diary. Keep notes on what your child does on a typical day, and record anything unusual that might happen on other days.
You are the expert on your own child. Share what you know with your pediatrician and any specialist you go to for help.
Write down answers to some of these questions, and take your answers with you when you talk to your doctor:
- How does your child handle problems?
- What makes you think they do or do not hear you?
- What frightens them?
- How do they like to spend their time?
Asha Asher, a pediatric occupational therapist and special education teacher with many years of experience working with children who have autism in several countries, reminds parents to be patient and gentle. Don’t push. You and your child have nothing to be ashamed of, when it comes to this disability. Remember, you did nothing to cause autism spectrum disorder. And, you can’t wish it away. If you push your child to do more than they can do, you will only make them more anxious or afraid.
“Life is very hard for autistic children,” she says. “Nobody chooses the body they are born with. Respect your child and know that they are doing their best.”
By Paula Hartman Cohen
©2012-2023 Carelon Behavioral Health
Taking Care of the Caregiver in a Family With Autism Spectrum Disorder
Summary
- Find a mentor.
- Get support.
- Try to stay positive.
Once you learn your child has autism spectrum disorder (ASD), everything changes. You may have thought you knew how a child progresses to adulthood, but once that diagnosis is revealed, you no longer have a clear picture of how your child’s life will unfold.
Remember this: You may be surprised to find some unexpected strengths in your child with developmental disabilities, such as a heightened sense of responsibility or an ability to focus intently for long periods of time.
A disability is only one factor in the myriad that make up a total person. Your child also has talents, interests and abilities that they’ll have throughout their life. Nothing can detract from their winning personality and beauty. Your child’s care team will work with you to strengthen those abilities and, at the same time, find ways to get around the challenges.
One thing is for certain—you have a lot of work to do. Some of that work will be easy and some will be hard, but millions of families live with children and adults with disabilities, and many are happy to share what they have learned.
So, take a deep breath. Now is a good time for you to reach inside yourself to locate your own strength. You’ll need it as you adjust to a new vision of your future and your child’s future. You’ll also need to reach beyond your comfort zone to tap whatever will help you learn a new set of skills and build a new set of goals.
A few must-dos
- Find a mentor. You need two things: someone to talk with who will listen and point you in the right direction when you don’t know where to turn, and someone with experience or expertise in dealing with autism. You might find the friendly ear among your social circle and the expert in a book written by someone you trust.
- Take care of your own physical, emotional and spiritual needs. If the caregiver can’t give 100%, everyone loses. You need rest, exercise, an occasional change of pace and renewal. You won’t find those needs if you push yourself until you drop. Work in time for yourself within the framework of your care giving.
- Work out a basic plan—a daily schedule and a way to share the load. Sketch out a basic schedule for you and the family. Assign tasks to those who can handle them. There’s no reason others—even children—cannot help, if they are able. The more organized you are, the easier it will be to handle days that get chaotic, as you learn the ropes of care giving.
- Line up resources to help. Reach out to friends and family for respite care, occasional rides to doctor’s visits or sports and school events for those who need them. Let a friend make an emergency grocery run and other chores they may be willing to do for you. When people say, “Let me know if there’s anything I can do,” take them at their word and give them an opportunity to help.
- Don’t let autism consume your life. You probably have others in your life besides the person with autism. Spend time with your other children, your spouse or partner, close friends and/or family members. Don’t take on the role of martyr. You will spend a lot of time and energy raising a special needs child. Don’t let a developmental disability interfere with the lives of your other children, or wreck your marriage. It’s not uncommon for parents of children with autism to divorce. Work hard to make sure you and your spouse do not grow apart as a result of a child’s disability.
- Learn all you can about autism. Read, study and talk to other parents. Ask questions when you get a chance to talk to doctors, teachers or others who work with your loved one. Remember: They are the experts on the condition but you are the expert on your own child with ASD.
Arm yourself with as many tools as possible, so you can make good decisions when you need to. With guidance from a trustworthy source, you should be able to face any crisis that comes along, and do so with confidence.
- Get support. Join a support group for caregivers of people with autism or other disabilities. This may be one of the most important things you do for yourself and your loved one with autism. Don’t be afraid to see a therapist for your own support or the support of other members of your family if you need help.
- Remember, your child’s autism is not your fault. You did not damage the gene or cause the neurobiological accident that led to your child’s condition. Don’t beat yourself up. Save your energy for things you can change.
- Try to stay positive. People with autism spectrum disorder learn, love and give back to society as much as anyone else. Be thankful for the strengths your child has, and for the team of caring and knowledgeable professionals that will help them.
Positive thoughts matter. Recent research at several major universities proves it. A positive outlook will help you stay healthy, happy and successful in caring for your loved one. So, today, and all days, count your blessings.
By Paula Hartman Cohen
©2012-2021 Carelon Behavioral Health
Technology to Support Those With Autism Spectrum Disorder and Their Caregivers
Summary
Helpful apps include:
- Calendars
- Social media
- Language skill-building apps
A caregiver of a person with autism spectrum disorder (ASD) can face seemingly endless work, nights without sleep or feelings of guilt. This is all while caring for a person who isn’t communicating or interacting in a way that can be understood. The task can feel overwhelming.
Advances in technology offer support to caregivers and those with ASD. Applications, or apps, exist that can help discover the personality and what the person with ASD can do. Those considered to be nonverbal can now have a voice. Those thought to be functioning can show how smart they are. Those believed to be not interested can show if they are or not.
The technology also gives the caregiver a chance to explore and get to know the person for whom they are caring. Other apps offer support to the caregiver. They can give a voice to their social, emotional and spiritual needs.
Educational/supportive technology
Augmentative and alternative communication is a way to make up for speech-language impairments. Low-tech (non-electrical) choices are a good tool. But touch-screen computers and devices such as the iPad have opened up a world of chances for those with ASD to express themselves. The apps let a person connect using pictures and phrases and, in some cases, let them change them to speech.
Users can plan daily routines. These can be defined as an order of distinct actions. The actions can be presented as visual cues and images and give the person a sense of control. The predefined schedules also have a way to control emotions and resist feelings of impatience.
Emotions and self-expression apps were designed to teach the person to associate their emotions to facial expressions and body language. This empowers the person with the goal of understanding and regulating them.
Social skills and language growth are applications that show how to act in larger gatherings, and speak and relate with others. Some of these apps support interaction through social or other media.
Learning and motor skills are applications that help teach things such as letters, numbers, counting, math, time and more. Games, art and other creative applications are also helpful.
Caregiver support
Social media apps such as Twitter, Facebook and blogs let caregivers connect and share with peers who are facing challenges like their own.
Calendar apps can help caregivers stay organized and keep track of tasks and duties to be done on a day-by-day basis. Calendars can be shared so spouses or other approved people can have a shared view of tasks and meetings. There are many free choices that are useful. In most cases, the calendars are able to be used by smartphones or other mobile devices.
A number of articles and advocacy papers are on the Web. In many cases, they are written and reviewed by experts.
There are many choices for a free email account that is secure and trusted. Once established, all email platforms let the user make contact lists. This is a way to keep all people you know in one place (doctors, friends, playgroups) for easy access to addresses and phone numbers. Most smartphones support access to email accounts, and the lists can be imported.
Resources
Free Videos for Autistic Kids: links to free digital resources for parents and teachers
Model Me Kids: videos for modeling social skills
By Keith Roberts, Vice President, Business Intelligence Architecture, Beacon Health Options
©2012-2021 Carelon Behavioral Health