Parents’ Guide: So Your Child Has Been Diagnosed With Autism…
So your child has been diagnosed with autism. What is the next step?
If you’ve just learned that your child has autism, it can be an incredibly daunting and confusing time. You likely have a lot of questions about what autism is, what it means for your child and for your family, and how to move forward. This guide will help you get started.
What Is Autism?
The Centers for Disease Control and Prevention explains that autism — or more specifically, autism spectrum disorder (ASD) — is a developmental disability. This categorization can refer to a number of long-term (perhaps lifelong) medical conditions. These disorders may occur due to an issue with the formation of regions of the brain that control language, learning, behavior, or physical movement.
In the case of autism, people who have ASD will have challenges relating to their behavior, communication, and social skills. Physically, people who have autism bear no differences to those who don’t have the disorder, but they will learn, behave, communicate, and interact in ways that are different (sometimes subtly, sometimes overtly) than those around them.
People with autism can be severely challenged by their different abilities to learn, think, and problem-solve, or they might be incredibly gifted. Some people on the autism spectrum need a lot of assistance to live a functioning and happy life; others are more self-sufficient.
Today, several other conditions that traditionally were diagnosed separately fall under the umbrella of the autism spectrum disorder diagnosis. In addition to autistic disorder, a doctor or specialist will also look for signs for Asperger syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS), among others. All these conditions fall under the category of autism spectrum disorder.
Signs of Autism Spectrum Disorder
People who are on the autism spectrum often struggle with social, behavioral, communication, and emotional skills. They might be very resistant to changes in their daily activities, and they might repeat specific behaviors for hours at a time, refusing to stop and reacting negatively if interrupted.
The signs of ASD can become apparent during toddlerhood, and they will continue for much of a person’s life.
If your child has been diagnosed with autism, you have probably observed some of the signs in your child.
- They don’t show interest in objects that are pointed out to them.
- They don’t show interest in other people and struggle to relate to other people. In some cases, children with autism will be interested in other people, but they will not know how to play, talk, or otherwise interact with them.
- They cannot make eye contact and will have little or no interest in socializing.
- They cannot articulate how they’re feeling.
- They do not want to be held or cuddled, or they will only allow themselves to be held or cuddled when they want.
- They might not respond when being spoken to, and they might be completely unaware that their name is being called.
- They might ceaselessly repeat words or phrases said to them, or repeat those words or phrases as answers to questions even when not contextually appropriate.
- They might repeat certain actions many times over.
- They might have strongly negative reactions to a new routine.
- They might have unusual reactions to stimuli, such as odd reactions to certain sounds, tastes, smells, forms of touch, or visuals.
- They might lose certain skills and abilities that they once had.
Where Does Autism Come From?
As Psychology Today explains, there is no “quick and easy answer” to the question of what causes autism. However, many factors are suspected to contribute to autism, including but not limited to genetic, environmental, and biological factors.
- Genetics: Researchers are in agreement that genes are one of the risk factors that can increase the chances of ASD developing in a child. Children who have a sibling on the autism spectrum also have a higher risk of developing ASD.
- In-utero issues: Babies born to mothers who take certain prescription drugs during pregnancy, like valproic acid and thalidomide, have a higher risk of ASD. Other evidence has suggested that key moments before, during, and immediately after childbirth can influence the development of ASD.
- Chromosomal issues: People who have specific genetic or chromosomal conditions, like fragile X syndrome or tuberous sclerosis, have a greater chance of developing ASD.
- Parental ages: Parents who have children later in life have a higher risk of giving birth to a child with ASD.
- Sex: Autism tends to occur more often in boys than in girls. This might be the result of underreporting, says U.S. News & World Report, but it is found across all socioeconomic, racial, and ethnic groups.
Testing & Diagnosis
There is no test that can diagnose autism spectrum disorder, so getting a confirmation of the presence of the disorder can be challenging for some families. Doctors must evaluate your child’s behavior and development patterns to determine if they have ASD.
The earliest that autism can be reliably detected in a child is around 18 months. By 24 months, an experienced professional can make a very accurate diagnosis. Since the signs of autism can be difficult to identify, many children won’t be diagnosed until they are much older. This robs these children of the opportunity to get early behavior therapy that can be very beneficial for them and their parents.
“Autism has no cure,” in the words of the mother of autistic twins speaking to NBC News. But early intervention can significantly help a child’s development. Specialized early intervention services can teach children vital skills to cope with symptoms and make connections to other children and adults.
If your child has been diagnosed with autism, you’ve likely already spoken with a doctor and a specialist who conducted an in-depth examination of your child. These specialists may have included developmental pediatricians (who work in child development and with children who have special needs), child neurologists (who specialize in the brains, spines, and nerves of children), and child psychologists or psychiatrists.
Early intervention services can be hugely beneficial to a child on the autism spectrum. You can call your state’s public early childhood system to find out if your child qualifies for intervention services. This evaluation can be done at no cost to you, and it is best suited for children under the age of 3. If your child is older, your public school system can connect you with an appropriate evaluator. Private therapy providers also offer intervention services, often on a much faster timeline.
How Can You Help Your Child?
A child on the autism spectrum presents unique challenges for parents. The experience can feel exhausting and complicated at times.
If your child has been diagnosed with autism, here are some tips that can help you cope with the challenges and opportunities ahead:
- Provide consistency and structure. Children who have autism spectrum disorder may struggle to apply what they learn in one setting in another setting. For example, if your child learned to use sign language at their therapist’s office or at school, they might not bring that skill with them at home. To reinforce learning, create consistency in your child’s environment. Learn how your child’s therapists and teachers are imparting skills, and then do the same things at home. In-home therapeutic services can greatly ease this transition.
- Keep a schedule. When a tightly structured schedule or routine is in place, children with autism tend to do a lot better. Set up a schedule, clearly communicate that schedule, and do not deviate from it. If you have to change the schedule for any reason, give your child as much advance notice and as many reminders as possible.
- Use positive reinforcement. Rewarding good behavior is a great tool for raising children in general, and it’s even more important for a child who has ASD. When a child learns a new skill or acts appropriately, be explicitly specific about what behavior they are being praised for. This can greatly help the learning process.
- Create a safe space at home. Give your child a private area in the house where they can feel secure and relaxed. This is sometimes known as a “sensory room.” For a child with autism, this often means organizing the room and setting boundaries in a way that makes sense to them, like using brightly colored visual cues to demarcate their safe area from general areas of the house. If your child acts out in harmful or self-injurious ways, you might need to safety-proof your home.
- Find new ways to connect. Communicating with a child on the autism spectrum can be difficult, but there are many ways to connect. Learning nonverbal ways of connecting with your child can open up dozens of possibilities for communication. These options can involve the way you look at your child, tone of voice, and body language. It also involves knowing which forms of physical contact work and which don’t. Even when a child with autism is not speaking (or never speaking), they are communicating with you as best as they can. This might mean paying attention to everything from your child’s facial expressions and the sounds they’re making to the gestures they’re using if they want something. It can even just be noting when they are tired or hungry.
- Look for the impetus. Try to identify the motivation behind your child’s actions. Because children with autism often cannot communicate clearly, they easily feel stressed and frustrated when their needs are misunderstood or even ignored. This may be why they act out. The Cleveland Clinic recommends having a system in place for both you and your child so you can begin to understand the environment and the timeline behind acting out. This can be a very nuanced series of actions, wherein you address the behavior while trying to filter out negative impulses. For example, you may have to physically block a child from engaging in aggressive behavior while depriving them of the attention they are seeking. Instead, reward positive behavior with attention.
- Don’t forget to have fun. Autistic children are still, first and foremost, children. While therapy is important work for both you and your child, make time for playtime. Even if certain activities don’t seem particularly therapeutic or educational, anything that can help your child to communicate or relate socially is beneficial. In some instances, the more different these activities are from what is done in structured therapy, the more fun both parents and children can have. Play is a fundamental part of learning for all children, regardless of any developmental disabilities.
- Be aware of your child’s sensory sensitivities. Children with autism spectrum disorder are often hypersensitive to different kinds of stimuli, including loud noises, bright lights, specific kinds of touches, and certain tastes and smells. Conversely, some children with autism are “under-sensitive.” Work with your child’s therapist to learn which stimuli trigger disruptive behaviors and which stimuli are easier for them to deal with. Each child with ASD has different stimuli that they find stressful or uncomfortable. Becoming aware of the type of stimuli that affects your child will help you identify and solve problems, defusing situations that are frightening for your child and creating consistently positive experiences for both of you.
- Create a unique autism treatment plan. While there is no single plan that will work for every child with autism, you can create a system that builds on your child’s interests, presents them with a predictable schedule, teaches tasks as a series of comprehensible steps, and uses highly structured activities to actively engage and maintain your child’s attention. If this is done with regularity, you have created a good system to assist you with the challenges of autism and also given your child a process by which their disabilities will not fully limit them. To do this, work with your child’s therapist to determine:
- Your child’s strengths and weaknesses.
- Which of your child’s behaviors cause the most problems.
- Which important skills your child needs to develop.
- How your child learns best (through seeing, doing, or listening).
- What your child enjoys.
You should remember that no matter what the treatment plan is, a parent’s full involvement is key to its success. By working closely with the treatment team and your child, you will maximize the chances of your child getting the most out of their therapy.
This is also why your own well-being is important. All of this is difficult work. Admitting as much and asking for help are healthy and necessary parts of the process of raising a child with autism. Parents can’t effectively care for their children unless they are also taking care of themselves.
Treatment for Autism: Applied Behavior Analysis
Determining the right treatment for your child can be a confusing process. There are many therapies that focus on reducing problematic behaviors and promoting positive behaviors in different ways.
One such method is known as applied behavior analysis, or ABA. It has been called the “gold standard” of autism treatment.
ABA is derived from behaviorist models of therapy, where rewards and consequences can help to elicit desired behaviors in clients. An ABA treatment plan is created by a board certified behavior analyst, working in conjunction with registered behavior technicians.
When used well, applied behavior analysis therapy can minimize undesirable behaviors, like reducing outbursts or tantrums. The therapy instead teaches a child to use their words to make requests or wait their turn for something they want. For example, if a child shares their toy with someone, ABA rewards that behavior.
Your child should receive roughly 25 to 40 hours of ABA therapy a week. As your child masters challenges and gains skills that they can start using on their own outside of therapy, these hours can be reduced.
How ABA Can Help
ABA therapy can look like asking a child to carry out a particular behavior, like following a simple command. If the child complies, they are rewarded. If they do not comply, they are not rewarded, and the request is made again. This is known as a discrete trial, which evaluates the child’s needs and their abilities on the autism spectrum.
The trials are made increasingly challenging, to find the upper limit of what the child can do.
Younger children receive a form of applied behavior analysis that looks more like play therapy, and this is also meant to encourage positive behaviors and redirect negative behaviors. As children improve, they are guided into more real-world settings, where they can take what they have learned and incorporate these skills into realistic social settings.
ABA is not intended to teach emotional skills. It can teach a child to respond to a greeting, for example, but it cannot make the child feel an emotional connection with the person offering the greeting.
Ultimately, ABA therapy will give your child resources to make it easier to cope with the challenges of autism. The skills acquired in this therapy will help to set your child up for success in life. The earlier this therapy begins, the better the results.
Other Forms of Therapy
ABA is often used in conjunction with other methods of autism therapy, like speech therapy and occupational therapy, to help a child develop a range of abilities that will serve them well in life.
- Speech therapy: Children with autism often struggle with speech and language issues, preventing them from effectively expressing themselves. This therapy helps them to improve all forms of communication, including verbal, nonverbal, and other forms of social communication. Therapists and technicians work with clients to strength physical muscles, hone enunciation, temper vocal tone, and learn body language.
- Occupational therapy: In this therapy, children with autism work with therapists on a variety of skills, including physical, motor, social, and cognitive skills. The ultimate aim of the therapy is to equip children with the skills needed to function well in everyday life, promoting independence.
The Big Picture
A solid treatment team can serve as the cornerstone of your child’s success. Children with autism can thrive in life, but it’s essential that they get treatment early. While it’s never too late for a child to develop skills, the earlier they can begin this skill development, the greater levels of success they will see in life.
Your child’s doctors and therapists will be the backbone of their treatment team. And you’ll work with them as a team member. Parents often provide the most crucial levels of insight that help craft the treatment plan.
While the initial diagnosis of autism in a child is undoubtedly life-changing for parents, know that your child can have a very bright future. With appropriate therapy and consistent support, you can set your child up for success.
- What Is Autism Spectrum Disorder? (March 2020). Centers for Disease Control and Prevention.
- Facts About Developmental Disabilities. (September 2019). Centers for Disease Control and Prevention.
- What Are Pervasive Developmental Disorders? (November 2018). WebMD.
- What Are the Symptoms of Autism in a 3-Year-Old? (July 2019). Medical News Today.
- What Causes Autism Spectrum Disorder? (September 2018). Psychology Today.
- Why the Focus of Autism Research Is Shifting Away From Searching for a “’Cure”. (September 2019). NBC News.
- Gender Differences in Autism. (May 2019). U.S. News & World Report.
- Diagnosis. Autism Society.
- What Every Parent Should Know About Autism. (October 2018). Psych Central.
- 12 Items You Can Use to Create a Sensory Room for Kids on the Autism Spectrum. (March 2019). The Mighty.
- How to Manage Challenging Behavior in Children With Autism. (September 2014). Cleveland Clinic.
- What Are the Treatments for Autism? (January 2017). National Institute of Child Health and Human Development.
- The Gold Standard of Autism Treatment. (November 2019). Medium.
- Discrete Trial Training in the Treatment of Autism. (May 2001). Focus on Autism and Other Developmental Disabilities.
- What Is Speech Therapy? Autism Speaks.
- What Is Occupational Therapy Important for Autistic Children? (June 2018). National Autistic Society.
- What Is ABA (Applied Behavioral Analysis) Therapy for Autism? (November 2019). Verywell Health.