Supports and Readings for Family Members

 

Explaining ASD to Youth and Family

Books that explain ASD to a young child with an ASD diagnosis include:

• All My Stripes: A Story for Children With Autism by Shaina Rudolph and Danielle Royer.  
• The Superhero Brain: Explaining Autism to Empower Kids (written for boys) by Christel Land
• The Superhero Brain: Explaining Autism to Empower Kids (written for girls) by Christel Land
• Autism Is...? by Ymkie Widerman-van der Laan

Books that explain ASD to a child with an ASD diagnosis who is 8 to 12-years-old include:

• Autism and Me - Autism Book for Kids Ages 4-8 by Katie Cook

Books that explain ASD to siblings include:

• The Super Hero Heart by Christel Land

Siblings

Living with a brother or sister with an ASD diagnosis can be very difficult for siblings. Parents can request a free toolkit from Autism Speaks to help siblings understand the unique perspective and challenges of their sibling who is diagnosed with ASD.

• Please see Autism Speaks' A Sibling's Guide to Autism, or contact them at 888-AUTISM2 (888-288-4762) to request the free toolkit.
• Please see National Autism Association’s ASD & Siblings: Addressing the Needs of Neurotypical Children with Siblings with an Autism Spectrum d/o or call them at 877-622-2884 to request this free resource.

Trauma-Informed Therapy

The behavior of a child can have a tremendous impact on siblings. If a sibling has witnessed episodes of emotional and behavioral dysregulation, including threats and physical aggression, the sibling may benefit from trauma-informed therapy. LINK-KID is a centralized therapy referral service to providers with vetted training to work with traumatized children. They have also cut wait times for therapy from 6-9 months to 40 days. Call 1-855-LINK-KID (855-546-5543) for additional information.

Sibling Support at the Sibling Support Program

Who is eligible to participate?

• Parents & caregivers, regardless of the age of the children. This includes all adults in a caregiving role, such as grandparents, aunts and uncles.
• Siblings between the ages of 6–18 that are able to engage appropriately and independently in a group setting.
• The child with challenging behaviors is not eligible to participate; this program is designed to support the family members of that child.
• Parents/caregivers can participate if siblings do not, and vice versa.

What is the program about?

For siblings it is an opportunity to meet peers who understand what it’s like to have a brother/sister with behavioral issues, express their feelings and process their experiences in a safe setting, and learn coping strategies.

Parents & caregivers join an information session on how to decrease trauma and increase resiliency among siblings. They discuss the experience of siblings, strategies for parents to best support siblings, information on why it is important to support siblings, and resources for the family. Once caregivers have attended the first session, they are invited to join a follow-up discussion group offered on subsequent Thursdays.

It is a free online program offered on Zoom in the first Thursday of each month. The sibling group is 5:30 pm – 6:30 pm EST, the parent/caregiver group is 5:30 pm – 7 pm EST, and the follow-up parent discussion group is 5:30 pm – 6:30 pm EST. To ask questions and/or to register, please e-mail or call Emily.rubin@umassmed.edu or 857-523-1145 (cell).

Parents

• Conferences, Webinars & Workshops - AANE.

Parent/Guardian Support Programs- Independent from State Programs

Federation for Children with Special Needs: Informing, Educating & Empowering Families. The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. They are committed to listening to and learning from families and encouraging full participation in community life by all people, especially those with disabilities. 617-236-7210. One of the programs is FamilyTIES.

Parent/Professional Advocacy League (PPAL): The PPAL offices offer free support to families when children have emotional, behavioral, or mental health needs. PPAL is staffed by family support professionals who have lived experience raising children with behavioral needs. They offer support, suggest new strategies to move forward when families are stuck trying to access services through school or insurance, and connect parents with other parents and family members. Families for whom English is not their first language can find support here: 866-815-8122.

Asperger/Autism Network: provides extensive free information and resources. Membership gives families access to online discussion forums, online and in-person support groups, workshops, and more. There is an annual family membership fee of $60; financial assistance may be available.

Grandparents

“A Guide for Grandparents: Answers to Common Questions & Concerns Relating to Autism Spectrum Disorder” is a free resource by the National Autism Association. You may also call to request it at 877-622-2884

Explaining autism to grandparents can be difficult. For information, please see Grandparents Toolkit or call Autism Speaks at 888-AUTISM2 (888-288-4762) to request this free toolkit.

Online “Open” support groups for grandparents can be found by searching “grandparent support group” at AANE Homepage - AANE.

If a grandparent is interested in talking with other grandparents of a child diagnosed with autism, there are online grandparent support group meetings hosted by Parent/Professional Advocacy League.