5 Ways Family Can Get Involved in Autism Care

Start by understanding needs and skills

Contributor: Thomas Frazier, II, PhD 

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For parents raising a child with autism, an offer of help from a grandparent, aunt, uncle or other family member means a lot.

The good news for families: If you want to help, you can. Whether you live nearby or far away, there are ways for extended family members to get involved in caring for children with autism.

1. Talk to the parents first

If parents are the primary caregivers, ask them directly about their needs.

Ask for their perspective on the child’s strengths and weaknesses. For example, does your grandson have strong verbal skills or difficulty communicating? Do his social skills make going out in public a challenge? Are negative behaviors, such as wandering off or even self-injury, a major concern?

“Do you live nearby and spend time babysitting? First of all, you’re already helping by giving parents a much-needed break. But you can take it a step further by practicing skills.”

Thomas Frazier II, PhD

Director, Center for Pediatric Behavioral Health, Center for Autism

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A clear understanding is important, especially if you will be watching the child. Let the parents know you want to be as effective as possible. When they know you want to understand, they’ll be more likely to open up about the daily realities they face.

2. Learn the right systems

Many parents have systems in place for reinforcing appropriate behavior. Learn those systems.

For example, let’s say your nephew is a high-functioning child with autism. He struggles with making and maintaining eye contact during conversation. His mom and dad have a system in place to reward him with Pokemon time — his favorite game — when he does a good job with eye contact. When you interact with him, you can reinforce that system.

At minimum, educate yourself about skills and abilities. For example, if your niece can’t speak or read well, sending a birthday card written in the same style as for a neurotypical child may cause problems.

If you want to dive deeper, look for family seminars or ask to observe a therapy session. Watching how parents and professionals interact with these kids can make a real difference in your understanding.

3. Fight the urge to “spoil”

This is a tough one for grandparents especially. Spoiling kids with gifts and treats feels like part of the fun of being a grandparent.

But just as parents of children with autism have to accept that their roles are a bit different than the average parents’, so do grandparents and other family members. Try a different approach: Dish up those homemade cookies as a special treat when the child has mastered a new social skill, for example.

4. Pick a skill

Never underestimate the power of focus. Children with autism spend a lot of time working on particular skills.

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Do you live nearby and spend time babysitting? First of all, you’re already helping by giving parents a much-needed break. But you can take it a step further by practicing skills. Does the child need to work on tying shoes? Make it a recurring game every time you visit. You can even incorporate those cookies mentioned above as a reinforcement.

You can help if you live far away, too. Children often need to practice scripted phone or text conversations, and a family member offers a good non-threatening place to start.

5. Provide support — emotional or financial

There’s no sugarcoating it: Caring for a child with autism comes with challenges.

So listen to your loved ones with empathy. Ask about their challenges, and be supportive. The beauty is that you can do this whether you live in the neighborhood or thousands of miles away.

Nobody likes to talk about money among family, but financial support might be a big help. If you have the means and desire to help and know there’s a need, it doesn’t hurt to offer. Like any medical condition, autism can come with its share of financial burdens.

The one thing all of these recommendations have in common is listening. If you truly want to get involved, listen to the parents or primary caregivers. More than anyone else, they know what the child needs — and how you can help.

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