April marks World Autism Month – a time to recognize that 1 in 44 children is diagnosed with autism in the U.S. each year, according to CDC data.
With each diagnosis, many parents and caregivers adjust to a different reality for their child than the one they had in mind. Adapting to this change personally is one thing; discussing it with other family members, including aunts, uncles, grandparents, and close friends, is another.
Scott Anderson, PhD, is a psychologist, and Kimberly Morris is a nursing practice manager – both with Rochester Regional Health. Both frequently work with children with autism and their families, and share their insight into having these conversations.
Commonly-asked questions
Having the conversation with family members after a child is diagnosed with autism can bring on a range of emotions and feelings. Often, those feelings are coupled with questions about the diagnosis, the child, the future, and many other things.
Before family members ask any questions, some may have a gut reaction as to whether the child is actually on the autism spectrum. This is often based on stereotypes of what autism looks like and how people will behave – as either very high-functioning individuals or non-verbal individuals.
“The autism spectrum is so big – it comes in many different shapes and forms,” Morris said. “Some people may go undiagnosed for decades. It is not a cookie cutter diagnosis.”
Some of the most commonly asked questions are:
- What does autism mean?
- Does this mean your child is “smart enough”?
- Does this explain certain behaviors?
- What happens when they get older?
- What does it mean for their future (e.g., going to school, living independently)?
Another question that comes up frequently is about what may have caused autism. The short answer is that scientists do not know what causes autism. There are many different factors that are correlated to an autism diagnosis – including genetics, environmental factors, or DNA. An old conspiracy theory linking autism and vaccines has been thoroughly disproven.
Difficult reactions
Over the last 25-30 years, knowledge about autism has slowly worked its way into the mainstream conversation. While it is still a challenging adjustment to make, having more support systems and resources in place is less isolating than it used to be for families who have a child with autism.
At the same time, some family members may see an autism diagnosis as devastating and have a long road toward a place of acceptance.
Giving family members the time and space to process is important. Do your best to understand what the foundation is for that person’s reaction.
“Sometimes that hesitancy or expression of pain is based on their previous set of hopes and dreams for that child,” Dr. Anderson said. “Family members need to mourn the life they thought the child would have before moving into a place of acceptance of the new life that child will have.”
Other family members find an autism diagnosis very helpful – seeing it as almost a sign of relief to put a name to some of the behaviors or delays that were identified during the screenings.
There are individuals who may shrug off the diagnosis as being guess work and based on unscientific opinion. It is important to remind them that doctors and providers use multiple evidence-based diagnostic tools and processes to make the formal assessment that a child has autism.
Offers to help
Family members may ask what they can do to help you and your child. Any level of involvement is up to you; there is no ‘right’ amount of assistance to allow. Do what is right for your child and your family.
Here are a few suggestions to give family members for consideration, in the early weeks and months following your child’s diagnosis and as time goes on.
Be patient
Younger children will have more frequent outbursts and voice their frustrations than older children. Since social skills are harder to develop for them, they may need to be more patient with them as it takes longer for them to learn how to express themselves.
Do your homework
Education is key for anyone who is close to people with autism. Reading properly researched and well-established information can open your mind to the future of your child and their loved ones. Local and national organizations such as AutismUp and Autism Speaks are excellent when it comes to learning about the basics of autism, behaviors, screening tools, support groups, and other resources.
Care for the caregivers
Parenting and providing care for a child with autism can be challenging – physically, emotionally, and mentally. Make the effort not only to spend time with the child, but to offer a listening ear to a parent or caregiver if they need it.
Depending on everyone’s comfort level, family members may be able to provide respite care. This could range from a couple hours for an afternoon to a weekend away, depending on what everyone agrees on.
Be there
Being present is incredibly important – both for the child and for the family. Putting in the time and effort to foster good relationships will deepen your connection with each person as they grow older. A child with autism will be more comfortable with someone they interact with on a regular basis.
As time goes on and the child grows, recognize that what the child needs and what their family needs will likely change as well.
“If a family is in a good place with a lot of good support through their school district, medical team, pediatrician, and other systems, they may not feel like they need a lot of extra support at that point in time – and that is okay,” Dr. Anderson said.
Resources
Over the last two decades, support networks and research surrounding autism have grown exponentially.
There is a wealth of reading material through Autism Speaks and the National Autism Association. Researchers and experts in autism have guides that explain an autism diagnosis, certain behaviors, tools, education materials, and other important topics.
AutismUp, a local non-profit organization in the greater Rochester area, and the New York State Office of People With Developmental Disabilities (OPWDD) are two of the most frequently-used resources.
School districts can also be a good foundation for support. Parents and caregivers are encouraged to advocate for their child early on to make sure they have the services they need through their district or other organizations.
“Getting involved in some of the communities in Rochester that are at the forefront of autism can help you know that you’re not alone,” Morris said. “Looking for people who you can share stories with and share your journey with and get ideas from is so important for families.”
The best resource recommended are screenings with your child’s pediatrician. Identifying developmental delays early on means a child can receive services earlier in life, which makes a significant difference in their overall development.
Morris has a son with autism and said the most important thing for her to share is the need for regular visits with your child’s pediatrician. The parent and pediatrician together can assess any possible developmental issues that may arise.
“I was able to catch my son’s developmental delays right at 18 months,” Morris said. “Because of that, I was able to get early intervention services in place for him. As a result, he has far surpassed everyone’s expectations.”
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