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Five Things Parents Wish People Knew about Having a Child with Autism

Published on May 05, 2023
  1. There’s only so much time in the day.
    • IEP, CCS, SSI, ABA, ST, IHSS, CVRC, DIR, RSP, SAI, IFSP, SDC, AAC, PT, OT, FBA, BIP, APE, ASD… When your child is diagnosed with autism, you enter into a world of acronyms. It can be incredibly overwhelming for parents attempting to navigate services through insurance, the school district and Regional Center. There is a revolving door of providers in and out of your house, appointments to attend, phone calls to make and never-ending stacks of paperwork to fill out. It’s exhausting and easy for caregivers to burn out, especially when social support can be hard to come by.
       
  2. Autism doesn’t have a “look.”
    • Children and adults with autism look just like everyone else. They look like an adorable little boy or girl curious if the doctor asked questions about them because they want to be their friend and then proceed to invite the care provider to their birthday party. They look like that teenager anxiously discussing their interest in genetic modifications of crops. They look like that nonverbal child climbing into your lap without a word to seek cuddles, but also maybe that child having a meltdown in the store because the lights and sounds are just too overwhelming. They have strengths and weaknesses, good and bad days, passions and vexations, just like everyone else.
       
  3. Autism isn’t a result of bad parenting.
    • If you have children, I’m sure you’ve experienced the army of well-meaning family members, friends and random passers-by offering advice. When you see a child having a rough time in public, don’t assume the child is being defiant or that the parent can’t handle them; instead, give the parent an empathetic smile and maybe even tell them what a great job they’re doing.
       
  4. Having a child with autism can be isolating.
    • I tell families who have a child on the spectrum that you can have the best family and friends in the world, but if they haven’t been through it, they just don’t get it. Finding childcare for your child with developmental delays or behavioral issues is a huge challenge for most families. Bringing their child along to family functions or big events can be incredibly overwhelming, and others often don’t understand why they can’t come or why they have to leave early just because Susie is having a rough day. Give them some grace, love and a listening ear.
       
  5. The child and their family need people to welcome them as they are—their authentic, wonderful, sometimes messy or chaotic, beautiful selves.
    • Parenting a child with autism has amazing highs and deep lows. I work day in and out with children with autism, and their parents constantly apologize for their child’s behavior, whether it’s their loud giggling and shrieks, refusing to budge from a chair or the floor to leave the office, climbing into my lap while I type or kicking and screaming when I examine them. Many parents with a child on the spectrum are afraid their child’s behaviors bother those around them because that’s what they’re often told. Let’s create a world where we can move from autism awareness to true acceptance, allowing those with autism and the people who love them to feel comfortable taking up some space in the world.
       

About the Author

Dr. Jennifer Johnson joined Valley Children’s as a board-certified and fellowship-trained developmental-behavioral pediatrician in 2020. In her clinical practice, she is an advocate for children with autism and their families. Throughout her career, she has conducted research on topics including autism, pediatric mental health and the comorbidity of mental health conditions and school problems.