Family Experience and Well-Being

When you first hear that your child has a diagnosis of Autism Spectrum Disorder (ASD), you may feel a mix of emotions. But how you think about your child's diagnosis may be different from how other members of the family deal with this new information. Read below for a quick overview of the feelings you and other family members may have. Links to more detailed articles in the CAR Autism Roadmap™ appear at the end.

Parent's Point of View

You may feel anger, confusion, grief, loneliness, and perhaps even denial. You can easily become overwhelmed. It is important to remember to ask for help. Coping with your child's challenges can be very difficult and stressful. But, you don't have to do it alone. In order to provide care to your child, you need to care for yourself.

Siblings' Point of View

Some siblings will be curious about why their brother or sister suddenly has so many appointments. They may resent having to tag along to so many office visits. You may wonder how to explain the diagnosis and answer questions at a level that is appropriate for your child who does not have ASD. Some parents worry about whether they will be able to give equal time and attention to all of their children. Please know that most children accept their sibling on the autism spectrum as they do all their siblings.

Grandparents' Point of View

Grandparents may struggle to understand the ASD diagnosis. A common response from grandparents is "no, cannot be," or "the child doesn't look autistic." Some parents wonder why the grandparents don't simply accept the diagnosis and help support them. Some parents get frustrated if others question their ability to do what's best for their child. Recognize that it's hard for grandparents to see their children and grandchildren faced with challenges.

The Point of View of the Child on the Autism Spectrum

Depending on your child's age and cognitive ability, he or she may or may not have realized that he or she has received special evaluations that are beyond the scope of a normal doctor's visit. He or she may have already had questions about the necessity of these visits and how long they will continue. If your child is older at the time of diagnosis, he or she may have already been aware of differences from peers. Some children may feel relief at having an explanation for any perceived differences, others may worry what this new diagnosis means there is something "wrong" with them. Still others may not have the cognitive capacity to truly understand the diagnosis. Nonetheless, it is important to communicate with your child about the new circumstances – at least as much as to minimize worries and explain the need for any therapies or special programs which your child will be involved with. How and when you choose to tell your child about the diagnosis itself is up to you, but it is essential that from the beginning you help build your child's self-esteem and create an awareness that all people have things they are good at and things they need to work on.

Additional Resources:

• Autism And Your Family, From Autism Speaks®
• Family Support Toolkits, From Autism Speaks®
• Siblings, From The Autism Society
• A Grandparent's Guide To Autism, From Autism Speaks®
• When You Have A Special Needs Grandchild