When a child is diagnosed with autism, parents may feel unsure about the path ahead. Here is the perspective of three moms that are also employees at BlueSprig Pediatrics, Alicia, Natalie and Sara. They all have kids with autism spectrum disorder (ASD) and they are sharing about what they wished they knew at the time of their child’s diagnosis that they know now.
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I will become an incredible advocate:
The role of every parent includes advocating for their children. For parents of children with autism, this role becomes more magnified, sometimes requiring much more time and energy. Understanding their child’s rights and fighting for those rights can be exhausting.
According to Natalie, confirming the diagnosis can be difficult and may include pushing for to make sure the right tests. Schools may also prove challenging to coordinate interventions in place and accommodations.
“It can be heartbreaking to face setback after setback. There is still so much work to be done to create equitable access to necessary and life-changing supports,” said Sara.
Patience and persistence will win out and parents find they become an incredibly strong advocate for their child.
2. I will have a different set of worries and that’s okay:
It’s natural for parents to worry about their children – about their ability to make friends, succeed in school, and grow up to contribute positively to their community. Parents whose children have autism have these worries, plus different ones. They may wonder what their child is feeling or what may cause a meltdown.
What many parents have found helpful is to find other parents they can talk to through joining a support group or connecting with other parents in the school who have a child with autism so they can share ideas on how they navigate the system and handle the daily challenges of raising a child with autism.
3. I will celebrate and appreciate my child’s milestones:
Most environments children with autism interact with regularly were not built with their needs in mind. Parents of children with autism try to plan their days around neurotypical behavior patterns, such as being able to transition from task to task easily but this can be difficult for children with autism.
What many parents wish they knew at the beginning of their child’s autism journey is that it also shapes the way many parents see the world. Many things that are taken for granted in a neurotypical world are celebrated and appreciated with new perspective.
4. We will become a flexible family:
Parents constantly need to be flexible and willing to “go with the flow.” Parents of children with autism may find they are changing plans more often than they don’t.
“We’ve learned trial and effort where our daughter’s limits are and when it’s not going to benefit her to follow through with something for the sake of following through,” said Sara. “Other times, the changes are more considerable, like picking up my child after she’s had a behavioral episode, finding a news school, or fighting battles to access appropriate therapies.
5. I will find a community waiting to connect and support:
Many parental resources are designed for neurotypical children and don’t necessarily work for those with autism and their families.
“So much parenting advice didn’t work for my autistic child. It’s hard to come into contact with advice over and over again that is “supposed” to work but doesn’t.” said Sara.
A wide variety of services and support groups are available within the autism community and many parents find a group of parents and families who share similar journeys to exchange tips and guidance.
We would love to hear your list. Feel free to comment below for challenges you have encountered in raising a child with autism. It’s vital for parents of children with autism never to feel alone and to know others are going through similar journeys.
About the BlueSprig Pediatrics moms: Alicia is a Board-Certified Behavioral Analyst and the center director at BlueSprig Pediatrics in Norman, OK. Sara is the center director at BlueSprig in the Tulsa Oklahoma center and Natalie is the center director at the BlueSprig clinic in Acworth. GA.
