For every child, the role of a parent/caregiver goes further than the word “caregiver.” It means advocator, supporter, friend, comforter, protector, and more. For a child that needs assistance communicating their wants and needs, the role of a parent/caregiver becomes essential to their mental and physical growth. So how can a parent adequately be a voice for their child with autism?
First, it is vital that a parent/caregiver understands and learns about an autism diagnosis. Often, early in a diagnosis, a parent/caregiver finds themselves confused, anxious, and even angry. Many parent/caregivers and are overwhelmed with new information and treatment options. Families must take their time and understand the autism diagnosis before decisions are made. It is essential families embark on their new journey and they don’t feel alone. There is support around the globe for families and parents/caregivers. There is a whole community walking through similar stories. For example, Autism Speaks informs parents about the importance of self-care through several ideas; practicing self-care, acknowledging accomplishments, making time for friends, continuing family rituals, and giving families time to adjust. These are significant first steps in creating and moving toward goals as a family to remind parents they are not alone. When a parent/caregiver familiarizes themselves with autism, they understand more about their child and how they think, process information, and communicate with others. This allows for a better understanding of treatment options and care provided to the child. A parent/caregiver must be involved in all treatment options. They need to ask questions and learn alongside the child. As a child grows in their knowledge of the world, a parent grows in their understanding of their child. When a parent understands their child, they can learn what behaviors and responses happen during specific situations. Asking questions like what makes my child nervous? Stressed? Happy? What does my child like or dislike? A deeper understanding can help parents see future responses to specific situations and possibly prevent future unwanted behaviors. Parents/caregivers then can receive their new information and teach children the right way to respond to certain situations.
Second, it is important for parents/caregivers to be in communication with their child’s school and/or behavior analysts. A good provider will engage and teach the parents how to respond and reinforce positive behavior in their child. Parents/caregivers must be the voice and advocate for their children. What goals does my family want to achieve? What does my child struggle with at home? Behavior therapy does not stop when the child leaves the center or school. Learn to implement what the child is learning in therapy and school into the home environment. The role of the parent/caregiver is to inform family, teach peers, and talk with the school to educate family, friends, and professionals about the child’s struggles. When everyone who supports and interacts with the child daily is aware of the goals and expectations, the child continues to make progress towards their goals. Communication begins and ends with parents/caregivers. Children on the autism spectrum struggle with communicating their wants and needs, but a parent/caregiver can fill in the gaps.
Third, it is important for parents/caregivers to learn their children’s rights regarding their disability. Melinda Smith, M.A., Jeanne Segal, Ph.D., and Ted Hutman, Ph.D., outline the rights parents have for their children. The list includes being actively involved in developing their child’s IEP (Individualized Education Plan) from start to finish. Parents/caregivers have the right to disagree with the school system’s recommendations and seek an outside evaluation. Parents/caregivers can invite whomever they want to be on the ARD (Admission, Review, and Dismissal) committee and request an ARD meeting at any time. Parents/caregivers have the right to a free or low-cost representation if an agreement with the school is not possible. Parents/caregivers should be an active participant in their child’s growth by understanding their rights. If a parent/caregiver feels that their child’s needs are not being met, it is essential for them to feel comfortable speaking to the school and therapy centers. If a parent is not 100% aware of their rights to be involved in each decision, the parent/caregiver can fall behind or feel alone in the future planning of their child(ren).
The most significant role as a parent/caregiver to a child with autism is to be their number one supporter. Remain positive and allow home to be a safe, calming place. In 2010, Areva Martin, founder of Special Needs Network, Inc. wrote a book titled, The Everyday Advocate: Standing Up for Your Child with Autism and Other Special Needs. Throughout the book, Areva outlines seven ways that parents/caregivers can be advocates for their children. She follows these recommendations with real-world examples to show parents how to advocate for their children as they grow and learn in the world around them. Martin calls these seven ideas the “seven principles of advocacy.” In these seven principles, she encourages parents to be a leader, to learn, to think critically, be proactive, be prepared, build a team, and be a voice. Martin is a leader for her family and many families globally. She has taught others to be proactive and to support their children every step of their journey and encourages no one to go at it alone. Support from family and friends is the first and most important step for children with autism. The journey can be difficult. However, learning from families like the Martin’s can teach others about the power of unconditional love and support for their children.
The role of a parent/caregiver never ends. Parents thrive on seeing growth and happiness in the lives of each of their children. Those begin in the rooms of the home and the lives of a family. Learning about autism, talking with schools and behavior analysts, knowing their child’s rights, and supporting a child every step of the journey allows a parent to be a part of the growth and success of their child. Celebrating each step brings joy and progress and shows parents/caregivers the importance they have in their children’s lives.
Authored by Ashley Beck