Autism :: 3 Things I Wish I Had Known from the Start

My husband and I recently attended our son’s annual IEP (Individualized Educational Program) meeting. This is our fourth IEP meeting since he started 3K in 2019. The meeting went well, and it made me appreciate what a great team my son has on his side. It also made me reflect on the things I wish I knew when he was initially identified as autistic that would have made getting to this point less of an uphill battle.

1. Not All Therapies are Right for Your Child

When your child is identified as autistic, a sense of urgency is imposed on you to try and “fix” them. My son was in early intervention, speech therapy, occupational therapy (OT), and pre-kindergarten for autistic children by his third birthday. By the time he was four and a half years old, he had lost interest in the preschool skills he had before he started school. He was more irritable and more susceptible to meltdowns. It was frustrating because we were doing everything we were told our son needed. 

After observing my son, researching, and talking it over with my husband, we decided to take him out of early intervention. The following summer before he began Pre-K5, I learned that his teacher used teaching methods associated with a behavioral therapy that has had adverse effects on autistic children, so I made a point to discuss those concerns with her. Once he was down to just the therapies through his school that he needed to improve his quality of life (speech and OT), my son started to flourish at school and home. 

As it turns out, behavioral therapies and their similar play therapies didn’t work for my son because:

1. As with any child, he enjoyed the way he played with his toys
2. Because he wasn’t speaking, he relied on non-verbal communication, including behavior, to communicate. Attempting to manipulate his behavior to get the teacher’s desired results was essentially cutting him off from his already limited means of communicating.

2. People Forget that an Autistic Child is Still a Child

Because my son is mostly non-verbal, people tend to talk around him instead of to him. There’s the assumption that because he doesn’t speak, he doesn’t think/understand. If he doesn’t understand, he doesn’t feel or care about others or what’s going on around him. If he’s not making eye contact or sitting still, he isn’t listening. They don’t fathom that they should find a way to explain the whys of their actions to him or ask for his consent.

However, when he’s around people that treat him like a person and respect his differences, you get to see all of his dimensions: shyness, sensitivity, goofiness, playfulness, friendliness, helpfulness, inquisitiveness, and compassion. My family is very fortunate that my son’s teacher, teacher aids, and therapists respect him as a person and have gotten to know him so that they can better help him as a student. We have family members that encourage his interests and respect his boundaries to the point where he enjoys visits with or without me and my husband being there.

3. You Don’t Have to Be an Autism Warrior Mom

I avoid mom groups for moms/caretakers of autistic children and adults because most of them that I’ve come across are for commiserating over what a burden the autistic people are in their lives or are sharing harmful treatments or “cures” for autism. I’m not a warrior fighting to “save my child from autism.” I agree that parents and caretakers of autistic people need better support but not at the expense of the safety and personhood of the autistic person in their lives. 

Parents of autistic people teach others how to treat their autistic children through their actions. When we fail to treat our autistic children as people, society fails to treat them as people. When we rage war against autism, we wage war against research to understand autism along with its co-occurring conditions and finding ways to improve the quality of life for autistic people.

Thanks to a friend from college and fellow mom of autistic children, I went down a rabbit hole and found my way to some great role models for moms of autistic children. If you’re the parent of a child with autism, I encourage you to check them out.

Role Model Moms of Children with Autism

1. Not An Autism Mom – Meghan is a former teacher and the mother of twin autistic boys. Along with autism advocacy, she offers services for educators and parents like IEP consultation. 
2. Fidget and Fries – Tiffany is an autistic mother of two autistic teenage boys who all experience and demonstrate autism differently. She’s a brilliant storyteller and intersectional advocate.
3. Autistic, Typing – Jules is an autistic mother of autistic children. Along with being an intersectional, disability advocate, she is also co-author of I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World.
4. Diary of a Mom – Jess is the mother of an adult, autistic daughter. Her social media posts are inciteful and heartwarming as she reflects on how far her daughter has come and how she’s beginning to navigate life as an autistic adult.
5. Nigh.functioning.Autism – TJ is an autistic parent of neurodivergent children and a high-tech AAC (Augmentative and alternative communication) device user when she has difficulty speaking. She is also an elementary school paraeducator and communication teacher to autistic nonspeaking teens and young adults.

If your child has autism too, remember that each child is different. Therapies that work for one child may not work for another. Work together with your child’s doctors and therapists to see what will be most beneficial for your child. 

What is your autism story?