By Sheila Edwards, CHC, RBT
My name is Sheila, I’m the Parent Liaison at Cornerstone Autism Center, and I’m also the parent of a child with autism.
The decision to tell family and friends about your child’s autism diagnosis is a very personal one. If you have decided that you are ready to share this with those closest to you, there are several things you can do.
For family members who are unfamiliar with autism and how it is diagnosed, you could explain some of the diagnosis criteria your child met, for example lack of eye contact, no words by age three, or repetitive movements. Since autism is a spectrum disorder, no two people with autism will have the same skill deficits in communication, socialization, or repetitive actions. So, you might have to dispel some of the myths associated with autism. Autism is not caused by bad parenting, for example, and not all people with autism have a savant skill or special talent, such as counting cards or memorizing dates. Explain the skills that your child has compared to those of his or her peers.
In the case that someone is preparing to babysit your child, you can share your typical routines, schedules, and emergency information. It could be helpful to tell family about some of the typical problem behaviors your child may demonstrate, the triggers that may lead to those behaviors and ways to calm your child once those behaviors begin. It can also be helpful to have a ‘practice run’ where the friend or family member visits and spends time with your child, but you are there in the home to help with problem solving and prevention strategies, and to give helpful hints.
It is important to also point out your child’s strengths and how family and friends can interact, whether through conversation, play, or just spending time with them. Open yourself to questions and be a resource to them when they seek further information. You can also share what motivates your child. Tickles, bubbles, songs, and hugs could all be ways for family and friends to interact with your child in a positive way.
Friends and family often want to know how they can help. Give them practical suggestions, and don’t be afraid to accept their offer of help. An hour of respite a month, helping with grocery shopping and cooking, or just playing with your kids so you can do some laundry would all be helpful to families of a child with autism when time and patience are stretched in so many directions. Let them know what your needs are and the times when you just need a quick break and a few moments to yourself.
Also, allow family and friends to process the information you’re giving them. Some may need more time than others to process their feelings about the diagnosis, and will need support and additional resources. Be sure to start small and increase information along the way to avoid overwhelming them. As they become more familiar and are starting to ask questions, you can suggest books and websites that they may be interested in. You may also want to let them know about some of the therapies your child is using to help him or her improve. Your family and friends may want to attend workshops with you, or read articles to familiarize themselves with the methods you’re using, to allow for consistency.
Some families may choose to participate in a fundraiser, or create one of their own, to raise money for an autism-related cause. This can help to strengthen bonds while supporting an organization that’s important to them. Parents can also create a social media page or blog to post updates and information. For those who choose to be more private, a family newsletter or email may be a nice way to share this information among your close circle of friends, family and advocates.
Don’t be upset if family and friends aren’t as interested in researching every facet of autism as you are. Allow friends and family to participate in this journey in the way that makes them feel the most comfortable. That way it will be easier for them to support you with all that you do for your child. If you do not have an extensive support system, reach out to local and online autism communities for information, ideas, and a listening ear. There are many amazing groups out there! TACA, Family Voices Indiana, and The Arc of Indiana are great places to start!
I hope this post gave you a few ideas to start conversations with your family members about your child’s autism diagnosis. This can be a difficult step for many families to take, but can result in a wonderful support system that’s created for your child and your family as a whole.
March 21, 2019, Sheila Edwards CHC, RBT