Autism Acceptance: Advocacy for Siblings of Autistic Individuals
As you may have heard, last month was Autism Acceptance Month. While we think it’s great to designate part of the year to show our support, awareness, and acceptance of our autistic community, we would also like to emphasize the importance of autism advocacy year-round. Through our advocacy, we seek to reach beyond just those diagnosed with autism, and to shed a special light on the siblings of autistic individuals – their experiences, their needs, and just how strong of an impact autism has on their lives.
To start, let’s understand a little bit about autism.
The DSM-V characterizes autism as a developmental disability with persistent deficits in social communication and social interactions with restrictive, repetitive, and stereotyped patterns of behavior, interests and activities. Symptoms of autism are present in early childhood and persist throughout life. A child with autism may have difficulty engaging in conversation, maintaining eye contact, sharing imaginative play, and understanding relationships. They may also feel the need to eat the same food every day, line up their toys, have a preoccupation with unusual objects, and excessively smell or touch objects. Though the research continues, there is currently no known cause or cure for autism.
According to the latest CDC Autism and Developmental Disabilities Monitoring (ADDM) Network report, approximately 1 in 54 children have been diagnosed with Autism Spectrum Disorder (ASD). Given such a statistic, the number of children living in a family with an autistic sibling can only be greater, and as stated by the Autism Society of America, “There are special demands on these siblings, and learning to manage these demands will make their childhood easier and will teach them skills that will make them more effective and resilient adults.”
An article published in The New York Times, For Siblings of the Autistic, a Burdened Youth, explains to us that, “Siblings of children with any disability carry the burden of extra responsibility and worry for the future… With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor-intensive, and managing challenging behavior requires vigilance.” As parents, you are the greatest teacher in your children’s lives. Understanding what your child may be feeling inside and knowing how to help them cope are the most important steps you can take.
The experiences and feelings of siblings of an autistic child can be both very negative and very positive. Many siblings of special needs children report growing up with greater resiliency and empathy, and a large number of them pursue careers in helping professions. However, negative experiences are also common:
- Feeling they do not receive the attention they deserve.
- Experiencing loneliness, withdrawing, isolating, and hiding feelings.
- Assuming role of auxiliary-parent.
- Assuming role of caretaker to overworked parents.
- Embarrassment, concern, and stress over sibling’s unusual behavior.
- Struggling to explain autism to peers.
- Recognizing they take on more responsibility than peers.
- Understanding long-term role as caregiver to sibling.
As a parent, how can you help your child cope with the burden of having an autistic sibling?
- Encourage sibling relationships. Your child can engage their autistic sibling through simple games like cards or shooting hoops. Assist your child in learning basic teaching strategies to engage autistic sibling.
- Designate special time for siblings. This includes a specific time away from other siblings.
- Teach stress and anger management techniques.
- Explain autism to siblings so they have the vernacular to understand autism themselves, as well as explain autism to their friends.
- Encourage your child to join a support group, such as Sib4Sib. This local to Detroit organization provides support groups, led by licensed medical professionals, designed specifically for siblings of autistic children. Each session seeks to provide siblings with a safe space to discuss their emotions, learn coping strategies, and spend time around their peers with similar experiences.
Please contact Natasha Kendal and Associates (https://www.drkendalandassociates.com/contact-us/) if you and your family are in need of more guidance and resources. We are trained to help.