The Missing Piece of the “Autism Awareness” Puzzle

It’s almost April, and soon people will be abuzz about “Autism Awareness.” There will be walks, runs, building and bridges will light up blue, and there will be the obligatory news reports and social media posts, where you will hear:

• Autism is a spectrum disorder that is identified by a range of conditions, which may affect how individuals behave, communicate, interact, and learn.
• Approximately 1 in 44 children in the U.S. is diagnosed with ASD, boys are four times more likely to be diagnosed with autism than girls, and it’s estimated that more than 2% of adults in the U.S. have ASD.
• Some signs of autism include delayed language development; avoidance of eye contact; restricted interests; repetitive behaviors; and intense reactions to sounds, smells, tastes, textures, lights, and/or colors.

What you will not hear is that behind every child with autism are an untold number of parents who are experiencing elevated levels of stress, fatigue,
and depression.

Burnout
Burnout among parents raising kids with autism is not surprising since these parents balance the roles of parenting and caregiving; implementing behavioral plans; acting as co-therapists in reinforcing positive behaviors while simultaneously trying to extinguish negative behaviors; managing teams of educators, doctors, and therapists; and advocating for their child’s needs, all the while living with their heads on swivel waiting for the next meltdown, self-injurious behavior, the next call from the school, or other disruption to their child’s delicate ecosystem.

What is surprising, however, is that parental well-being is not addressed as part of the overall treatment plan for children with autism. This is a missing piece of the treatment puzzle because, as studies have shown, parental well-being is directly linked to the long-term outcomes of their children. It seems this would be even more so for children with autism as, oftentimes, it is the parents who are single-handedly driving the efforts on multiple fronts to secure resources and provide for their child’s long-term needs.

As a result, more resources for parents raising kids with autism would not only positively impact the parent themselves, but they would also directly impact the short and long-term prognosis of their children who rely on them to manage, advocate, and provide for their needs.

In the absence of a systematic approach to provide parents with the resources they need to cope with the ever-present challenges of raising a child with autism, it’s incumbent upon the parents themselves to seek out, find, and avail themselves of whatever resources they can find.

If you’re a friend or a family member of a parent raising a child with autism, here are some things you can do to lighten their load.

Being There
It sounds easy enough, but parents of children with autism need someone to listen and ask how they are doing. They often get so busy with
autism-related activities and therapy that it doesn’t leave much time for anything else.

Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her autism bubble and combat isolation.

Listening without Judgment
Many times, parents of kids with autism hesitate to tell you what’s really going on out of fear of judgment. One way you can support your friend or family members raising a child with autism is to ask them about their struggles and just listen. You can do this by simply saying, “I may not be able to relate to your experiences, but I’m here to listen.”

Help with Respite
Whether the child is a toddler, adolescent, or adult with autism, respite is often a complicated issue for parents because it can be difficult to find someone you trust to watch your child. An offer to provide a brief respite from a trusted friend or family member who knows how to appropriately interact with the child is such a gift. It seems like a simple favor, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.

Resources
If you are a parent raising a child with autism, here are three parent resources you can explore:

 
If you are a mother raising a child with autism:

 
The Autism Mom Coach is a 1:1 coaching program founded by Lisa Candera, a certified life coach, podcaster, lawyer, and full-time single mother to a teenager with autism. Lisa also hosts a podcast, The Autism Mom Coach, where she shares practical, actionable tips to support parents raising a child with autism. Lisa is currently accepting applications for 1:1 clients.

To learn more about my 1:1 coaching program, visit my website and schedule a free consultation: theautismmomcoach.com