5 Talking Tips for Telling Family and Friends About Autism
Like most of us, you probably didn't plan or prepare for your child's autism diagnosis. You may have sought an evaluation for your child because they were struggling in fundamental ways. Maybe a family member shared a concern about your child's development. However, perhaps your child's challenges were not readily apparent to everyone in your family. Autism, like many behavioral or learning disorders, is not always easy to recognize. There is no blood work or definitive medical test. Following an assessment and diagnosis, you faced a myriad of choices and decisions, such as finding the right school and therapies necessary to promote your child's development. This complex process has yielded a wealth of information about your child, more than you ever thought possible. You are mobilizing your resources and moving forward to help your child achieve their potential.
Now is the time to share valuable insights you've learned about your child with the people who mean the most to you. This journey will take resilience, and support from family can make the difference between feeling isolated and feeling valued as the head of your child's team. Certain family members may have been with you since the first step of the journey. Some may want to help but are not sure how. Other family members may be more resistant. You may have heard relatives say, "let them be a kid," "wait and see," or "don't compare them with others." What challenges will you face in educating your family about your child?
In choosing how or whether to share information about your child's diagnosis, it helps to remember that: "Other things may change us, but we start and end with the family." –Anthony Brandt
When you begin the journey of sharing your child's autism with friends and family members, here are five talking tips to help you through the process.
1. Misunderstanding Autism
When you decide to share your child's diagnosis with a family member, they may have limited knowledge of autism. There is much information and misinformation about autism; maybe your relative has seen a movie about autism or knows someone with autism, and they do not believe that the diagnosis fits your child. In recent years, the medical field has moved toward a spectrum conceptualization, and children on the spectrum may vary dramatically in their strengths and challenges. Autism is diagnosed behaviorally, and many symptoms are on a continuum from typical to atypical. Sometimes, what we don't understand is intimidating; the first step is to acknowledge those feelings. You may have experienced a range of emotions when first receiving the diagnosis, including sadness, anger, acceptance, and new joys.
Not only can you validate your family member's feelings, but you are also in the best position to educate them and communicate what your child needs. When you share your child's diagnosis with family members, be prepared to educate them on the basics:
● Autism spectrum disorder is a complex neurodevelopmental condition that starts in utero and is generally lifelong. Experts agree that it is genetic, although they have not isolated a single, specific gene or combination of genes.
● Autism spectrum disorder is associated with varying degrees of challenges in specific areas. Every child on the spectrum differs significantly in the associated behaviors, the severity of symptoms, and the optimal intervention. However, all children may share a common difficulty modifying their behavior to respond to social conventions and expectations.
● Autism spectrum disorder is not caused by environmental factors, although they certainly play a role in mediating behaviors and promoting strengths associated with autism spectrum disorder.
● Parenting does not cause autism. Children with autism are born to parents of all ages, ethnic backgrounds, socio-cultural backgrounds, and religions.
3. Address fear of labeling head-on
Families may resist the diagnosis because they worry a diagnosis may become a label, limiting your child's educational and social opportunities. This concern may be more pronounced than if your child were dealing with a medical condition associated with a definitive medical test and treatment regimen, such as childhood diabetes.
Remind family members that people make judgments all the time; some may be accurate and others false. We can only focus on doing what in our hearts we know is right for our child.
Point out that the diagnosis does not define your child. Autism is a way of being in the world that may one day be an essential part of how your child identifies him or herself, but it may by no means be the only way.
I had a foster child diagnosed with autism spectrum disorder when he was three years old. In middle school, learning about the diagnosis helped him understand why he gravitated toward certain activities and avoided others. Talking about the diagnosis enabled him to embrace both his strengths and challenges and to appreciate his individuality. By the time he reached community college, it was and remains an essential aspect of how he sees himself in relation to others. Now, there are so many other facets of his identity and how he sees himself in the world, including artistic aspirations and peer relationships, that his questions are less and less centered around autism.
4. Point out the value of a diagnosis
A diagnosis helps you understand and gives a framework for responding to characteristic behaviors. For example, if you know that your child is prone to meltdowns when overtired, you avoid overscheduling daily activities.
A diagnosis also enables you to take advantage of early intervention services. Early diagnosis makes the most of your child's neuroplasticity, which describes the process of stimulating or forming new neural pathways. Simply put, a young child's brain may be more elastic and capable of making connections when learning than an adult's brain.
A diagnosis is a shorthand way of communicating information that allows you to work more effectively with educational and medical professionals. Perhaps most critically, a diagnosis opens the door to beneficial services that can make a world of difference in how your child learns to communicate, socialize, and achieve their potential.
5. Put the diagnosis aside and find common ground
Focusing on your child's specific behaviors and special strengths may enable you to reach a common understanding. Put the diagnosis aside and talk about both the gifts and the challenges. For example, let your family know your child may not avoid eye contact because they are unfriendly; they may avoid eye contact because they are self-regulating. Explain to your family that your child is not having meltdowns because they are spoiled; they are most likely overstimulated and need a break. Point out that your child may have a fantastic fund of knowledge in certain areas (although you occasionally remind the child that not everyone shares the same passion for these specific topics).
Autism Speaks offers a toolkit with terrific suggestions for grandparents or caregivers, like having grandparents participate in a visit with your child's doctor or therapist. Other excellent references include the Official Autism 101 Manual, by Karen Simmons, and A Letter to Newly Diagnosed Parents and Families, by Scott Allen, Psy.D.
Parents are not generally prepared for a diagnosis of autism; it makes sense that they haven't planned how to tell loved ones. Consider allowing the most important people in your life to participate in the unanticipated challenges and unexpected joys. You may be surprised to find out how family members pitch in when they understand how best to support you and your child. Your child's needs may change as your child develops, but family, however you define family, will always be there.
Traci Jordan, Psy.D., L.S.S.P. holds a dual license in clinical and school psychology and has assessment experience with a wide range of developmental, cognitive, psychological problems and challenges. She has a lifelong passion for child development and family systems, completing pre and postdoctoral training in child clinical and developmental pediatrics before opening a private practice focused on child assessment and treatment. She draws on her 35 years of experience in assessment and research methods to develop and teach a core graduate level class in psychodiagnostics through the Department of Educational Counseling of Texas A&M Corpus Christi. A mother of two, she is proud of serving as a foster parent for 10 years and as a canine rescue volunteer for Hope and Faith Foundation. Friends, yoga, family, and pets keep her centered.
This blog post was adapted from the presentation given during WestviewEDU on Thursday, September 7, 2021. WestviewEDU is an education series presented by The Westview School for parents and caregivers of children with autism spectrum disorder. For a full list of WestviewEDU sessions for 2021/2022 academic calendar year, visit The Westview School online.