What Parents of a Child with Autism Wish You Could Understand

Posted on April 21, 2023 in

Autism

, by Michelle Centamore, Long Island Press

 

About 1 in 36 children are diagnosed with an autism spectrum disorder, according to the Centers for Disease Control.

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Children on the spectrum may experience cognitive and social/emotional delays, sensory issues, and difficulty communicating with others. Their parents often face obstacles they never dreamed, managing hours of therapeutic services and working tirelessly to help their child progress through unimaginable, atypical circumstances. Many parents express the desire for deeper compassion, support and understanding. 

“Autism is a disabling disorder that deprives those who have it of many of the good things in life that most people take for granted,” says John Gilmore, father to Luke, 23, who was diagnosed at 16 months. Gilmore is also the founder and executive director of non-profit 501(c)(4) organization, Autism Action Network. According to Gilmore, many individuals with autism are also challenged with gastrointestinal and immune issues, seizures, and communication challenges. 

An autism diagnosis can make parents and their kids feel very isolated, says Gilmore. “We have had close family members who completely cut us off following our son’s diagnosis. My son is 23 and he has uncles he has never met. It hurts.” 

Parents of children with autism often feel judged. Meltdowns, for example, can be triggered by physical reasons such as pain, overstimulation, crowding, temperature and more —”things that are outside of their control,” says Rose Fitzpatrick, Huntington mother of two boys with autism. “It is not from a lack of discipline.”

Some children with autism may lack the skills or confidence to initiate or participate in conversation or activities even at a family gathering, according to Fitzpatrick. “Please be patient and try to make them feel welcome,” she says, adding that her sons can communicate with a shake or nod of the head or with a communication app on their iPads.

When children with autism make progress, feel free to join in celebrating, suggests Michele Flores of Holbrook. Pointing, recognizing or responding to their name, playing appropriately with toys, and imaginary play are all huge accomplishments to parents of a child with autism. Of her 9-year-old son, Flores says that each gained skill—no matter how seemingly small—is a big achievement. “I’m beyond proud of how far he has come and those moments give me hope for the days when life is very hard and challenging raising a child with autism.” 

“Most families affected by autism are navigating a lonely, isolating road,” says Fitzpatrick. Small acts of kindness and assistance can go a long way. Accompanying a parent on errands, staying in the car with their child, helping to host a family gathering, or just offering a listening ear can make a world of difference in helping a parent with a child with autism feel supported. 

 

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