Update : Since this post, my Autistic friends have educated me on why Temple Grandin’s message is problematic to the Autistic community. I’m so thankful for that education and their willingness to educate me on it. For the sake of transparency, I’m leaving the post the way it was written, because I believe it is important to show our own growth.
Autistic Hoya writes an amazing post here, that lays everything out for us. Thank you so much for this resource!
It is time. After mulling around in my head for a while, I have finally gotten the courage to talk about Autism Moms. Courage? Why courage?
Well, let’s just say, my views on the subject, do not seem to be mainstream in my circles. I don’t know if this is a specifically to moms, but this is the experience I have. I used to think I was what some would refer to as an “Autism Mom”, sometimes known as “Autism Warrior Mom”. In the past six years on this journey I have realized one big thing. “Autism Moms'“ suck.
I mean, can we just start with the name? Autism Moms means mom of an autistic child. It is worn like a badge to distinguish ourselves from others. Autism mom may be easier to say than “parent of an autistic child”, however is sounds an awful lot like Autism Speaks, and well.. we will get into that….
Autism Mom implies we put Autism first, and a lot of us do.
The sad part is a lot of us put Autism first. I read an article today written by a parent of an autistic child. She talked about her delight when her child first learned her ABC’s at a ridiculously young age. She wrote about the joy of how she felt her child’s excitement was advanced as well. I understood that feeling. We felt similar with B. When we thought about a speech evaluation, he learned the alphabet. Now in Kindergarten, he is being sent home with First Grade work.
I really felt for this mom. I remember being in her shows and everyone telling me, and not telling me, there was something “wrong” with him and thinking, “but how many other 2 year olds can read?”
Then her blog took a turn for the worst. Apparently an autistic diagnosis was all it took to throw all that potential out of the window. She no longer believed her child’s excitement was advanced, but autistic. As if all of a sudden the daughter she had the whole time up until this point no longer existed. Those dreams she had for her spawn were no longer attainable. Her child instantly became Autism first, Child Second.
Or we see another “Autism Mom” talk about how she solved a problem she was having and we implement the same strategy. If it doesn’t work we blame the child, instead of realizing her child may need proprioceptive input to stay regulated, while mine needs vestibular input.
Instead of asking WHY our children are doing something, we tend to look at every unwanted behavior as “autistic”, so we grab another mom’s solution and expect it to work for our kid. Yet at the same time, we separate the desired behaviors, such as intelligence, from the diagnosis.
We cry over birthday invites, social outings, and the amount of friends our kids have, without realizing that these are OUR standards of community, not theirs.
We force “Normal” Recreating the “Cure” narrative
We start to create stories that tell ourselves our children are not going to “end up like that” and we start forcing them into the world of masking. Masking is when neurodiverse people act normal. It is often why you hear people talk about autism being “cured” or “recovering from autism”. A woman said to me once, “oh I’m so sorry, he’ll grow out of it. My friend’s kid used to be autistic and now you can’t even tell.”
While that statement is a whole other post entirely, it shows how we are creating the narrative, repeating the cycle, and causing the stereotype. By forcing our child to hide their “autistic” behaviors, like folding hands in prayer instead of hand flapping when they are merely excited, we are reiterating the misconception that autism is a disorder that someone can recover from.
We recreate the illusion.
The real kicker lies in the fact that everyone has a different definition of autism, and this personal definition impacts how we view our situation. The “woe is me” attitude so many of us take on, is not only detrimental to us, it is detrimental to our kids.
Autism mom? What about other parents?
The “Autism Mom” badge is something we wear proudly, but what about Autism Dads? Autism non-binary parents? Other caretakers of Autistic people, grandparents, other relatives, foster family?
Autism moms is a super exclusionary term, that is steeped in sexism. It implies that moms know best, or that females are more capable of taking care of autistic people then other parents and caretakers. I have also heard stories of neurotypical “Autism moms” saying they know what’s best over the autistic adult themselves. This doesn’t separate us from mainstream society. A lot of the “Autism mom” problems are really just parenting issues, deep ingrained gender stereotypes. We cannot get mad at partners, or care takers, for not understanding or not being involved if we are not going to include them in something as basic as a title.
We view AUTISM as the enemy.
If you view autism as the enemy, you view your child as the enemy. Autism is how the brain functions. How the brain functions determines how your seven senses interpret the world. To say you hate autism, is to say you hate how your child’s brain interprets the world. Period. Full Stop.
Recently, there was a woman on Dr. Phil who was so afraid of her child’s autism, that she convinced herself he had autism AND schizophrenia, even though doctor after doctor denied her claim. Now, I agree she is an extreme case, but there are a lot of lessons to be learned from her. Our attitudes help create moms like her, and give them the fuel they need to keep going.
You, the neurotypical mom, may not see it that way, but that’s irrelevant. What matters is how your child sees it. Being autistic is an identity. We are now in an era where autistic adults all across the spectrum are telling their stories. Temple Grandin, a well known autistic speaker / advocate, talks about her upbringing in many of her books and how it helped her. Naoki Higashida does not speak verbally and is the author of many books which tell about his experiences. There are even YouTube videos, like In My Language, made by autistic adults who are kind and brave enough to teach us. This brings us to my next point.
We silence Autistic voices, and exploit our children
THROUGH ORGANIZATIONS RUN BY NEUROTYPICAL PEOPLE WITH NEUROTYPICAL VIEWS ON AUTISM: A.K.A. AUTISM SPEAKS
If you’ve heard of Autism, you’ve heard of Autism Speaks. Autism Speaks is an organization started by neurotypical grandparents of an autistic child. They do drives, and they fund research to help find a “cure”. All. the. things. When you type “autism” into Google, they are your main source of information. Every single parent of an autistic child is directed to Autism Speaks for guidance, direction, and the best practices of raising an autistic child. Autism Speaks comes across as a parent’s best friend, and if your goal is to make your autistic child into a neurotypical one, that is the right place for you.
Autistic Self- Advocacy Network, on the other hand, is an organization run by autistic people, for autistic people. I don’t need to tell you which one autistic people prefer, because they are quite capable of telling you themselves:
The Autistic Avenger wrote a blog post titled, “98% of Autistics Hate Autism Speaks”.
Amythest Schaber, of Ask an Autistic, made a video titled, “Ask An Autsitic #6 - What’s Wrong with Autism Speaks?”.
Kaylene, an actual Autistic Mama, has a blog post titled, “4 Simple Reasons I don’t support Autism Speaks”.
If we want to create a better world for our children and have all the same things that all the other children get, we need to include them in the conversation that is happening about them.
I do not mean go around looking for autistic adults to bombard with questions about their upbringing. That is pretty rude, and not so cool. I just mean shifting your information intake, pick your battles, check your privileges, and most importantly, start asking WHY?
One more thing: STOP PUTTING YOUR CHILD’S MELTDOWNS, SEIZURES, AND OTHER EMBARRASSING INFORMATION ONLINE.
Asking for support for YOU is absolutely fine, but if your child is in a meltdown and your first thought is to grab a phone to record it, YOU ARE DOING IT WRONG.
So Now, what?
What if you looked at your child’s behavior as their way of speaking? What if instead of getting mad at your child’s tantrum, you stopped to really think about why?
What if we looked to neurodiverse sources like ASAN for guidance instead of Autism Speaks? What would our experience as parents look like then?
We live in a society where words like manipulate, get thrown around a lot when referring to babies. All babies. When B was two weeks old, someone told me he was crying to manipulate me. It became a core theme throughout his babyhood, and it always confused me. What other way can this little meat sack, with useless limbs and the vocal ability of a Baby Alive Doll, tell me he needs ANYTHING?
It baffled my mind that people, everyone around me it seemed, would judge how much I held my baby, when I should feed him, for how long, ‘til what age…. I mean the list just goes on. The fear was always the same, the fear of being manipulated by the baby. Turns out, B is a sensory seeking and sensory avoidant child, who needs deep pressure to help regulate his vestibular system.
By ignoring what the people around me said and following his baby cues, I was helping him stay regulated. I listened to my baby and my body, over the books and parenting advice. We believed B had his own timeline, and it turns out we were right. If we stopped looking at behavior as a means to an end, and started looking at it more as a means of communication, how does the story in our mind change? Is it defiance or avoidance? is it a melt down or a tantrum? Are they just hungry? Maybe they are not sure what is going to happen and they just need some reassurance.
Pastor Craig Groeschel writes in his book Divine Direction talks about how we need to be more concerned about our WHO before our DO and our WHY before the WHAT. Now this is not the post for religious politics, but the core principle is something we, as autism moms, can learn from.
Let’s make a pact and focus on WHO our children are before focusing on the behavior, or the DO, and ask WHY they may be doing something, instead of focusing on WHAT they are doing.