Acceptance. Inclusion. Listening, and Creating Space to Feel Heard: What Parents of Children on the Autism Spectrum Want You to Know

Parenting is not easy, especially for parents of children with a high level of need. This month, I’d like to highlight things-parents-of-children-on-the-autism-spectrum-want-you-to-know/. I really enjoyed this article because it brought up many common examples that parents of children on the spectrum experience. One thing that tied many of these examples together was the fact that there are a lot of assumptions—about individuals with autism and about their parent(s) and caregiver(s). I would like to point out that making assumptions about individuals can be more harmful than helpful. Please ask rather than assume.

What Parent(s) of Children on the Autism Spectrum Want You to Know About their Child

Not all children on the autism spectrum look the same. Just because my child looks like other children, does not mean they are not on the autism spectrum.

Autism is often referred to as an invisible diagnosis because you can’t always see autism. Since autism is considered a neurodevelopmental disorder, the neurodivergent brain is not something one can visibly observe; the brain just processes things differently. If you have met one child with autism, then you have met ONE child with autism. “Autistic” is a label that does not define a child with autism put it is an important part who they are.

Children on the autism spectrum are smart and work hard. They have thoughts and feeling too!
Scattered skill development is common so children may demonstrate gifted or average abilities in certain areas and below average abilities in others. Children with autism are often working so much harder than other children as the environment is not designed for neurodivergent individuals. Some children may be nonverbal but they still have a lot to communicate. A core feature of the autism spectrum symptoms include deficits in social-emotional reciprocity such as sharing thoughts and feelings. This does not mean that the child does not have feels or want to share their thoughts.

What Parent(s) of Children on the Autism Spectrum Want You to Know About Parenting

Parents in the autism community are well-connected.
Many parents of children with autism have consulted, researched, attended trainings, therapies, medical appointments, support groups, etc. Unsolicited advice is not helpful. One of the most helpful sources of advice is directly getting feedback from the child. Parents know their child best but the expert is the child with autism. We try to stay up-to-date in the latest treatments but aren’t seeking a “cure” nor want to be pitied. Our children can and are doing amazing things!

Please be patient with my child and remain calm. More discipline is not the solution.
Autistic meltdowns are common with sensory overload and take place in the same places public places that other parents take their children. People assume that when a child is having an autistic meltdown they are being willfully disobedient, and the parent just needs to be more firm and provide better discipline. If it were only that easy! Judgmental comments and looks contributes to the stress we already feel. Since comorbid medical and mental health conditions are common with children with autism such as epilepsy, gastrointestinal issues, sleep difficulties, attentional difficulties, and anxiety these factors also contribute to the child’s behaviors.

Parenting a child on the autism spectrum can be incredibly lonely and isolating. Caregiver burnout is real so self-care, support systems, and time for breaks are essential. We want you to include us and our child. It means a lot to be invited and included. Since parents are constantly with their child, a simple invite may be a well-deserved break. Schedules can be a challenge–finding a baby-sitter even more so. A trip to the store, a weekend away, or a family vacation can take a significant amount of planning and effort. Parents often become experts at being flexible problem-solvers.

We need to hear we are doing a good job as parents. We also just need someone to listen.

Written By: Charlotte Johnson, MA, LPCC

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