We Don’t Have Time for “Autism Mommy Wars”
If you have spoons, use them.
My son received an autism diagnosis at age three after we noticed delays in his speech development, an early reading ability (called hyperlexia), and repetitive patterns in his play. I remember thinking, “at least he’s not hitting people or smearing feces.”
And that thought right there, I now know, is what divides us. We, the parents of autistic children, have become more and more divided between those whose kids have higher support needs and those whose kids have lower support needs. It can be hard for these two groups of parents to relate to each other when managing very different struggles, but we are also each other’s best hope for advocacy.
I know because I’ve been on both sides of the support needs fence.
I don’t remember the first time my son hit me, but I do remember a graph of data being placed in front of me at his IEP meeting. It was a bar graph that showed he had hit staff members 53 times the day before. He had started hitting us at four years old, an entire year before he started hitting at school. This somehow felt like a blessing at the time; at least he wasn’t hitting people outside the family? At least this struggle was private? As I sat in that IEP meeting looking at that graph representing my child’s stress, helplessness washed over me. He had lost all his spoons and so had I.
Spoon Theory
Spoon theory is a metaphor for those living with chronic conditions to help explain the limited energy we experience at any given moment. While autism is not a chronic disease, living in a world surrounded by systems that don’t accommodate your needs is a chronic stressor. Some activities take more of our spoons and some activities replenish our spoons. The harder life is for us, the fewer spoons we have.
Source: Neurodivergent Insights
But “hard” is relative so we need to respect each other’s experience of losing and gaining spoons. It’s human nature to cheer yourself up by comparing your experience to someone else’s “more difficult” experience, but this also creates “mommy wars.”
Whether it’s “mommy wars” about being a stay-at-home mom versus a working mom, sending kids to school versus home-schooling, or [fill in the blank] type of parenting versus another, we have forgotten one very important detail: being able to choose anything in parenting is a privilege.
We Must Check Our Privilege
When it comes to parenting an autistic child, we don’t get to choose the level of support our kid needs. But for parents whose kids have fewer support needs, we need to recognize this as a privilege. This privilege may look like not needing to find long-term adult care for your child because they are able to live independently. It may look like being able to work because your child can tolerate school. It may mean your child is sleeping through the night. Whatever having more spoons looks like for you is a privilege.
I know that I am privileged with an education to understand my child, health insurance to care for my child, a flexible job that allows me to take time off when my child’s needs increase, a public school system that has served his needs over the years, and simply the fact that at age 17 my kid has been able to tolerate school.
Healing the Divide In Our Community
As our child’s primary co-regulators, we act as their shock absorbers, and on some days we have fewer spoons than others. When those of us who are out of spoons looked around at those whose figurative spoon drawers are overflowing, it’s easy to think “they don’t get it” or “they are not one of us.” But, this is how the crack in the autism parenting community widens.
This crack was blown open recently when RFK Jr. arrived on the scene talking about things he knew nothing about. If you felt triggered by his words, you are not alone.
Most parents I’ve talked to felt the same way I did. His words reopened an emotional wound from early diagnosis days when someone told us that our child would never do this or never do that. Many parents of kids with lower support needs were angry at how out of touch RFK’s comments were to the full spectrum of autism while parents of kids with higher support needs felt seen, but also angry that they need more help and aren’t getting it.
Regardless of how much support a person needs, all autistic individuals are worthy of a life where they feel loved, seen, and supported. While our parenting experiences are different, that shouldn’t stop us from advocating for one another. We cannot let politicians, who talk about things they do not fully understand, divide us.
If you realize that you have the privilege of more spoons, use them.
You can reach out to a friend with an autistic child to get to know them. What brings them joy? What is hard right now?
If you sit at a PTA meeting table, ask how your child’s school is supporting students with higher support needs at events so they can come.
When you hear about an autistic child who needs lots of support, teach your children that everyone is worthy of the support they need to thrive.
Learn what happiness looks like for all people, not just through the lens of your experience.
Unlearn that success is academic achievement. Success is a child’s smile, an excited jump or flap, or info-dumping about a favorite topic. Success is emotionally regulated, connected safety.
We Have No Choice But to Get Political
I try to stay out of political discussions. However, when political decisions negatively impact the education and mental healthcare of children with developmental disabilities and their families, I entered to ring.
I believe that all kids and all adults with developmental disabilities have a right to a quality education and health care, which includes mental healthcare. This is where the medical model and the developmental model are at odds.
We don’t cure developmental disabilities like it’s a broken bone to be put back together; it’s so much more complicated than that. We work to support individuals with developmental disabilities by helping them gain skills AND by better aligning the systems around them to meet their needs. Since systems are designed by people, we have to help everyone understand the needs of those with fewer spoons.
Still, awareness isn’t enough. Families need access to evaluation services without months to years long waitlists, therapies that are covered by insurance, public schools that are fully-funded so they can have more support staff, respite care for parents, transition care beyond K-12 school so adults with developmental disabilities can work and live in community with dignity to pursue their very own version of happiness.
You don’t need to have a child with higher support needs to speak up for a family with higher support needs. All you need to do is listen, believe them, and then use your spoons to advocate for them.
How can you help a parent with fewer spoons today? If you’re all out of spoons, how can others advocate for you? Tell me in the comments.
Let’s Stay Connected,
~Dr. Emily
I’m Dr. Emily, child psychologist and former school psychologist, and I’m on a mission to help parents and teachers be the best adults we can be for the neurodivergent kids and teens in our lives. This isn’t about changing the kids, it’s about changing us. Learn more with my resources for parents, teachers, and schools at www.learnwithdremily.com.
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This is so true and it's a universal point, not just US centric. the more the community is divided over 'ressources', the less the overall acceptance of neurodiversity advances and adversaries of this diversity play on these divisions.
When I said that I believed a genuine wound in the autistic community was created by the responses to RFK Jr.'s remarks, I was piled on by "autism moms" and autistic people alike. Your post just helped me clear up that misunderstanding, at least in my head.