Understanding and parenting a child with autism

When your child is diagnosed with autism, it can change or challenge the vision you have for their life. But remember: Your kid is the same kid they were before they received a diagnosis.

Julia Cartwright, PhD, Pediatric Psychologist at the UT Southwestern and Children's Health℠ Center for Autism Care, shares helpful advice and offers tips on how to support children with autism spectrum disorder (ASD).

What should I do when my child is first diagnosed with autism?

Take time to process your feelings

It's perfectly human to experience a range of feelings when your child receives an autism diagnosis, including guilt, sadness or hopelessness. While some parents may feel relief in the ability to understand their child better, it is also normal to feel sad that some things may be different.

Give yourself time to recognize and accept your feelings so you can be there to support your child through theirs.

Start to learn more about autism

There is a lot of stigma and misinformation about autism and what causes it. Learning more about autism is one way for parents to empower themselves.

Dr. Cartwright stresses parents should not blame themselves. Nothing they did caused their child to have autism. "The research doesn't show any specific link to anything that happens during pregnancy that always causes autism," says Dr. Cartwright.

After receiving your child's formal evaluation, Dr. Cartwright advises parents to read through it, but not to get bogged down by the formal language. It's best to focus on the list of recommendations in the evaluation.

Build your support network

One of the best things you can do when your child is first diagnosed is to build a support network. That might look like leaning on trusted family and friends for support or joining an autism-friendly community group. Autism Speaks offers these resources for finding your community.

You may also want to call your insurance, your child’s school and/or your child’s existing doctors to learn more about therapies for autism, medications for autism symptoms and other resources for support.

Common challenges for parents of children with autism

Social communication challenges

To understand your child's social challenges better, it's useful to know how their brain works. Dr. Cartwright uses a simple analogy with parents.

As a parent of a child who has autism, it's your job to meet them where they're at and figure out what support they need. Social communication is often one of the biggest areas where support is required.

Appropriate support will be different for each child based on their abilities. Dr. Cartwright's recommendations include:

• Finding a social skills group: These groups teach kids the specific steps for joining a conversation or saying no when they don't want to play a game other kids are playing. Using this step-by-step approach can improve the way kids with autism manage social interactions.
• Working with your child's teacher: Ask the teacher to set up a system in their classroom or during recess where your child can only access their favorite activity (such as a computer game, favorite book or toy) after they've asked another kid to play or joined a group for five minutes. This helps them get the social skills practice they need.

"Unlike neurotypical kids, children who have autism need specific coaching around social interactions. They can't just watch and copy what someone else does. They will benefit from being taught how to manage specific social interactions and they need lots of time to practice," says Dr. Cartwright.

Managing big emotions

All behavior is a form of communication for children with or without autism. Even the most intense behaviors tell us something about a child's needs or experiences. When emotions are high, it can be difficult to access language, so behavior becomes a communication tool. Autism Speaks offers a free guide for parents related to challenging behaviors.

Sometimes, these big emotions are the result of underlying features of autism, like a heightened experience of sensory sensations or difficulty understanding why something cannot be as it was expected. The behavior may be an automatic response to an internal feeling (e.g., stomach pain, headache) or to an external stimulus (e.g., too many people talking at once, bright overhead lights). These automatic responses or big emotions may sometimes be referred to as an "autistic meltdown."

Trying to understand the reasoning for the behavior can be helpful in addressing it. A child with autism who is overwhelmed might be sitting on the floor crying because the events taking place in their environment are overstimulating.

"We want to help parents see a situation like this through a lens of compassion. Their child needs help because their brain is going haywire. Over time, they'll be able to mentally note the supports that help their child feel calm, like wearing headphones or spending a short amount of time in a crowded place," says Dr. Cartwright.

Dr. Cartwright offers a few other tips to help with big emotions:

• Try a soothing distraction. Turn on a favorite song, play a favorite game, or go get their favorite blanket and give them a big squeeze. You might also ask them about something they love and say something like: "Tell me about that new toy you're so excited about."
• Remember that you didn't cause it. Intense behavior is not your fault and it's not always possible to prevent big emotions. Even if an outburst is occurring in response to a boundary that you set, that does not always mean that boundary is incorrect or should be removed.
• Be patient. Sometimes you will have to simply wait for your child to calm down. Making it through an outburst shows your child that they can experience some distress and still be okay afterwards, even if things don't go the way they expected.
• Check your perspective. If you anticipate an unexpected change will upset your child, try a shift in your perspective. For example, if there's going to be a substitute at school, you could tell yourself, "There's a sub today, so it's probably going to be a tough day. What could I offer my child to make today more predictable? If my child does get upset, it's not my fault. Today is just a tough day."

Disciplining children with autism

For a child who has autism, punishing them for behavior you don't want doesn't necessarily translate into teaching them what you do want. Parents should provide clear expectations of behavior.

"I try to help parents focus less on misbehavior or punishment and more on what they need or want their child to learn. Reinforcing what you want your child to learn is more likely to create a process that sticks," says Dr. Cartwright.

I try to help parents focus less on misbehavior or punishment and more on what they need or want their child to learn. Reinforcing what you want your child to learn is more likely to create a process that sticks.

Let's say you need to teach a younger child that it's dangerous for them to come near the stove.

Here are some steps you could try:

1. Ask yourself: What do I need them to do?
2. Come up with an answer: To stay safely behind the counter, away from the stove.
3. Think about how you could help teach them that: You could put a stop sign where it's their place to stop – or put tape on the floor so they know exactly where to stop.
4. Praise them for doing what you need: When they stop their feet at the line or the sign, give them a high five.

Tips to support a child with autism

1. Find an environment where your child feels welcome

Look for activities where your child can be surrounded by other kids who love the same stuff they do, like a music or art class, or a play group or club at your local library.

"If they're surrounded by kids who like their favorite stuff too, it's much easier for them to make connections and feel welcome," says Dr. Cartwright.

2. Use visuals to support communication and teach behavior

Dr. Cartwright recommends using visuals as much as possible since it can be easier for children with autism to process.

Here are a few ideas to make things more visual for your child:

• If you're going on a trip: Put a picture of where you're going on the fridge or on the family calendar.
• If you're working on a morning routine: Make your child's checklist visual with pictures of socks and shoes or brushing teeth – or anything you'd like them to be able to do without a lot of prompting.

"If you provide helpful visual tools, it can help your child be independent and also lower their stress," says Dr. Cartwright.

3. Connect with other parents of kids who have autism

Dr. Cartwright recommends connecting with other parents of kids who have autism through church groups, library groups or virtual parent groups.

"It can feel very isolating to only hang out with friends who have neurotypical children because their development can look so different. In contrast, it can be so helpful to connect with parents who can directly relate to what you're experiencing," says Dr. Cartwright.

4. Don't be afraid of using rewards

Dr. Cartwright likes to remind parents that when there's no internal motivator, it's okay to use an external one. "It's not bribery because those external rewards are on your terms. You're deciding what you're okay with ahead of time," she says.

For example, tell your child, "Let's make sure we do something fun after the social skills group." And then maybe you plan to go to a movie or get ice cream, so your child will know it's worth putting in extra effort.

5. Prepare for new experiences

When you know your kid is going to face something new or challenging, you can do small things to help make the experience more predictable. For example, if they're going to a new activity or group, you could drive to the place ahead of time so they could see it first. And then you can make sure they know who is going to pick them up, where and at what time.

"Helping children with autism feel reassured about some of the details can take away some of the distress of trying something new," says Dr. Cartwright.

6. Don't forget to take care of yourself, too

If you find yourself getting increasingly upset and you're with another adult who can supervise your child, it's perfectly okay to take a little break to calm down.

"It can help to think of walking away to care for yourself as a wonderful modeling opportunity. It can show your kid that this happens to everyone – you get a little mad and then you say you're getting upset and it's hard for you and that you need a break," says Dr. Cartwright.

A few other ways to take care of yourself include:

• Respite care. You can apply for in-home or out-of-the-home respite care to get a much-needed break from caregiving.
• Be open to counseling. Many parents of children with autism benefit from counseling. You may find yourself experiencing several waves of grief over time and need support. And, if you have a partner, the extra time and attention your child needs can put a strain on your relationship that counseling can help with.
• Try weekend groups. Look for weekend groups at your local library, community center or church that can give you some much needed "you" time, while also benefiting your child.
• Develop a strong support system. Ask yourself: Who among my friends and family can I share information about my child and their diagnosis so that they can better support us? What kind of professional help would most benefit my child right now?

Additional resources for parents of children with autism

1. The Center for Autism Care at Children's Health offers recorded videos to help you learn more about behavior management, language development and autism symptoms.
2. Autism Navigator offers videos, courses and webinars to help you support your child.
3. Autism Speaks has many free resources on many topics in English and Spanish.
4. Gallant Care offers free consultation with a professional to answer questions about autism or autism-related treatment.
5. The Autism Society of Texas has virtual parent and individual support groups.

Learn more

The Center for Autism Care is an interdisciplinary program offering compassionate, comprehensive patient care and research for children with ASD. Learn more about our program and services.

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