When a Family Member is Diagnosed with Autism

By Erica Kearney, M.A., LABA, BCBA

It’s no secret that autism rates have increased dramatically in recent years. In 2000, it was estimated that one in 150 children had an autism spectrum disorder (ASD); today that number is one in 36, according to the Centers for Disease Control and Prevention (CDC).
 
As the number of children with autism has steadily increased, so has our awareness about the challenges parents of these children encounter on a daily basis. Most of us know someone who has a child with autism. Many of us may have a family member who is on the spectrum.
 
If your son or daughter or brother or sister has a child who has recently been diagnosed with autism, you may be wondering what to say or do. If that is the case, we hope that the following six tips will be helpful.
 
Tip #1- Remember that you are not an expert. All children are different and are raised differently from one family to the next. If you did not raise a child with autism, you will never be able to fully relate to a person who has. Even if you have raised a child with autism, it does not mean that you can entirely relate to your family member who also has a child on the spectrum. In my 14 years of working with children with ASD, I have never met two who are the same. Techniques and strategies that may work for some kids do not work for others because every child’s behavior may be triggered by something different.
 
Tip #2 - Don’t tell them everything is going to be all right. The fact is, no one knows what the future holds. There will be tough times and rewarding times, but none of it is predictable. It is okay to tell your family member that you understand why they might be scared - not knowing how this is going to affect their child and family going forward is a scary thing. As parents, we envision what we think our child’s life will be like before he or she is even born. When that child is diagnosed with a disability, that vision changes to an unwritten story.
 
Tip #3 - Don’t be afraid to ask questions and learn more. When family members ask questions about why their niece or nephew or grandchild may or may not do certain things, it gives the parent an opportunity to explain how the child’s autism may affect them. It also gives parents an opportunity to teach family members how to respond to their child in specific situations.
 
Tip #4 – Get involved even if you are not sure what to do. For parents going through the process of raising a child with a disability, it is wonderful to hear, “How can I help?” Sometimes it’s the little things – like helping them get caught up on household chores or watching the child while they run to the store.
 
Tip #5 – Don’t believe everything you read. There have been numerous studies and extensive research focused on autism. The wealth of information accessible on the Internet can be extremely helpful, but it can also be problematic if it is not scientifically sound. One reputable source for information is the National Autism Center, which has identified 14 “established interventions” that have the most research support, produce beneficial outcomes, and are known to be effective for individuals with ASD. Information about these interventions is available as free downloads on www.nationalautismcenter.org.
 
Tip #6 – Be supportive. You may not agree with your family member’s approach to a situation, but it’s not helpful to be judgmental. Raising a child with a developmental disability is a learning process. Mistakes will be made and lessons will be learned. Your family member needs to know that you will be a shoulder to lean on during times of learning as well as someone to celebrate with when noticeable progress is made.
 
If you have been affected by autism and have ideas on how to help family members adjust to this new way of life, please don’t hesitate to contact me. I would love to help family members share strategies that have worked for them with others.
 
Erica Kearney M.A., LABA, BCBA, is Executive Director at the May Center School for Autism and Developmental Disabilities in Chicopee, Mass. She can be contacted at ekearney@mayinstitute.org.

About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded nearly 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. May Institute operates five schools for children and adolescents with autism spectrum disorder (ASD) and other developmental disabilities, including one in Chicopee, Mass. For more information, call 800.778.7601 or visit www.mayinstitute.org.