Step 6: Family and Sibling Support

Extended Family Involvement

Grandparents and extended family play an important role in the life of a child with Autism. The Interactive Autism Network released a study in 2009 that found that grandparents were often the first to raise concerns that their grandchild was not meeting the expected milestones.

In addition, other key findings from grandparents include:

• Almost a third (31 percent) of respondents reported that they were the first to voice concerns about a grandchild’s developmental delays.

• Seventy-two percent said they are involved in making treatment decisions for their grandchildren.

• More than 36 percent said they provided at least some level of direct care for a child with Autism at least once a week, while 18 percent said they were their grandchild’s primary babysitter.

• Nearly 14 percent reported that they and their adult children had moved closer to each other so that the grandparents could help the family manage all that is involved with the child’s ASD.

• About 25 percent of respondents reported spending up to $99 a month to help meet their grandchild’s needs. Some said they contribute as much as $1,000 a month, often for such things as therapeutic toys or recreational activities.

At the same time, grandparents are concerned about their own adult child’s emotional well-being and health as they watch them experience the stress of being primary caregivers to children who have substantial needs.

There are also grandparents raising grandchildren with Autism, creating different challenges unique to this situation. Grandparents have often lost their parents and, therefore, cannot benefit from the caregiving or emotional support provided by great-grandparents. Grandparents raising children with Autism can feel a unique drain on their limited resources and energy.

It is important for grandparents to also recognize their limitations and to seek help and support from counseling professionals, a circle of friends, and other family members.

Family Considerations

Growing up with a sibling with a disability often develops siblings who are caring, more mature than their peers and responsible. They realize that their parents are stressed and that a lot of family time and resources are directed to their siblings. On the other hand, some siblings grow up to resent their brother or sister with a disability and the parents who are doing their best to raise them. It is important that siblings can speak candidly about their experience as a brother or sister of a child with Autism. Take time to ask your typical sibling what they need. To talk? To get away for a while? It is important to carve out time that is just for your typical child(ren). Ask the Autism Society of Greater Akron about respite programs in your area that supply quality care for your child with Autism.

A great resource with ideas for showing your typical child that you care is the Sibling Support Project. The Sibling Support Project is the first national program dedicated to recognizing, promoting and addressing the life-long and ever-changing concerns of millions of siblings of people with developmental, health and mental health concerns. Read What Siblings Would Like Parents and Service Providers to Know on their website. This group initiated the concept of Sibshops, a recreational group just for siblings of kids with disabilities to help connect them with other sibs, give them a place to express their joys and concerns, teach them about Autism, help them solve problems and let them have fun. Contact the Autism Society of Greater Akron for help in locating a Sibshop near you.

Adult siblings of individuals with disabilities admit that it was helpful when their parents created some special time for them without their siblings.

It was also helpful when parents had some expectations of the child with disabilities, for example, requiring him to do appropriate chores, instead of excusing him because of his Autism. Adult siblings also state that they appreciated being recognized for their achievements.