Autism Acceptance has shifted for me over the years. I will also say my kids are boys, but are they though? Kid1 is 19 and Kid2 will be 18 in two weeks. They will always be my tiny little sacks of potatoes. Their giant feet will always remind me of my little tummy kickers, and I will always want snuggles from my boy-bies.
Autism presents differently in girls. I’m not the best person to explain all things. I dig the National Autism Association. Also check out ASAN or the Autistic Self Advocacy Network. You can tell how much they care about their people by the merchandise. No tags, better texture and weight options because they understand the sensory needs of autistic people.
When I was asked to join the Take the Elevator Podcast, I was excited for the opportunity to promote my books. At the same time, I was really hesitant. I don’t believe I’m the best Mom out there. I make mistakes all the time. I have literal moments when I think back and can vividly see where I had funded some therapist’s midlife crisis with my children’s future therapy hours.
A few months ago my son asked for energy drinks. I told him we could revisit the conversation when his voice drops. This past weekend he nearly squealed when he pointed out that it dropped. I told him it’ll bounce back up. In hindsight, that wasn’t the nicest thing to say to my kid. It was demeaning and insensitive. He took it with a smile because he knows he’s loved, but that still wasn’t the good mom approach to his request.
I was flailing when it came to my kids when they were younger. I didn’t know their triggers or when I came close to their boundaries, and we had so many breakdowns because of it. When they were younger, I placated my insecurities by saying I was making society autism aware. I messed up. They had a public meltdown. Everyone was aware something was going on and I would glare at these strangers, and tell my kids it’s not their fault. Some people were never taught not to stare or be rude to strangers. We can forgive them.
As they’ve gotten older, I learned to interpret the things they couldn’t communicate to me. Even now, there are times when I don’t understand what they are experiencing and how I can support them. Filling in the gaps are all of the actually autistic adults on Facebook or TikTok that have learned to self advocate. Look for hashtags like, #actuallyautistic. There are so many people willing to share who they are and what it means to them. They are actively teaching me autism acceptance. They are able to speak up for their needs and what it means to live their lives in a way that has helped me improve my approach with my children.
The podcast made me pause because I am clearly not qualified to speak for autistics anywhere. But as a Mom, it’s still my job to advocate.
It’s so easy to jump on a soapbox and hammer out the do’s and don’ts on any topic. The goal is to be gentle enough to encourage others to want to learn more. I didn’t know where to step in aggressively and where I should just back off, because I’ve had my kid’s lifetimes to learn what I know, and fully understand I don’t know nearly enough. I’m sharing the podcast, but wanted to expand here.
Diction matters
In the autistic community, we no longer say someone is on the autism spectrum. There is a Neurodivergent spectrum, but no one is entitled to know another person’s neurology. In the community, you’re autistic, or neurotypical. Allistic is another word for someone that isn’t neurodivergent. Here’s another article. To claim there are levels and layers of autism further dismisses the unique gift and light each person brings to this world.
Throw the word “normal” right out. “Normal” is a symptom of masking. Normal is extremely degrading and overt ableism. Autism is not mental illness. It’s neurodivergence and in my home, it’s an amazing gift. Check your superiority and privilege.
Symbolism
The puzzle piece is out. The puzzle implies that something is missing or needs to be solved. It’s infantilizing. I lean toward the rainbow infinity symbol, but there are others.
Wandering
Autistics wandering off is a terrifying reality for me. My middle son wandered constantly. Every once in a while my oldest would, too. Imagine two kids walking away at random times in opposite directions. I kept them in a double stroller as long as I could, and eventually needed a leash. I hated being that parent, but peace of mind is worth so much more than degrading looks. Every once in a while you hear about a tragedy on the news of an autistic person wandering off. They aren’t trying to scare anyone.
Autism Speaks
Autism Speaks doesn’t speak for autistic people. Do your own homework. Look at who runs and funds it. It’s a harmful organization for autistic people.
Vaccines
Miss me with this bullshit. My kids had sensory integration dysfunction at birth and my middle son was born on the floppy side. He’s solid now. Here’s an article.
Stimming
Stimming is when a person will perform a physical act that will support them in self regulating. A large characteristic of autism is Sensory Integration Dysfunction. Each person is unique. My oldest wanted to be held closely at birth. He was a big hugger. My middle son wanted to be swaddled than left alone. Any holding him beyond diaper changes and feedings would set him off. They are two very different autistic young men with very different needs. Some people are sensory seeking, while others avoid sensory input as much as possible. They both played in mushy things like yogurt, peanut butter, and feces. I was so grateful when they were out of diapers. They both enjoyed spinning in circles. They both would run head first into a door, then fall back and hit the back of their heads. I swaddled my toddlers like infants because they still needed that support to be soothed.
The little things that we might not notice as neurotypical people would drive my boys nuts. This could be uncomfortable clothes tags, the sounds in a busy mall, shoes or clothes . . . Anything. They were just super sensitive to things I’m fairly numb to.
Stimming can be rocking, flapping arms, spinning, tapping, chewing, or anything that repeats to help them self soothe an uncomfortable situation. My kids literally ate through their shirts for years. I used to get chew toys or chewies on Amazon, but they never lasted longer than a day. My kids would chew through them within hours.
Communication
Communication doesn’t only mean speaking. I learned how to communicate with my toddlers when they looked at certain things, or when they pointed. There’s sign language. Augmentative and Alternative Communication (AAC) is a hand held device. People can input their thoughts into it, and it will speak for them.
Also, expect autistics to communicate literally and not symbolically. My oldest would never call “mashed potatoes,” mashed. They were “smashed potatoes.” Subtext and sarcasm were lost on them.
Masking
Autistics are forced to mask their behaviors. It’s not a kindness. It’s what happens when people are not autism aware or accepting. It’s done to fit in. The behaviors that allow them to self regulate are not usually socially acceptable, so children are stopped from flapping their arms or spinning. They’re not allowed to self soothe.
In my home, this often meant the boys would have a great day at school, by their teacher’s standards, and come home to fully fall apart. It was safe to be home and fall apart.
I have to ask my kids if they have the bandwidth for my questions when I pick them up, after they’ve had to be social. Sometimes they don’t. Sometimes they want to sit and watch videos on their phone and they want to be ignored. It’s about allowing them the space to live on their terms.
Masking is exhausting and can lead to burnout. It’s adding tone to your voice to convey emotion. My middle kid often speaks in this delicious monotone. It can be odd to people, but I know he’s most comfortable when he’s doing it. It’s adding facial expressions and trying to stand still.
Acceptance means allowing autistics the grace to not have to behave in a way that makes others feel comfortable.
Eye Contact
My kids listen better when they aren’t looking at me. Eye contact is uncomfortable and sometimes painful. There’s just too much to focus on when looking at a person. If you’re interested in the science, please geek out here.
Gender Fluidity and Autism
Autistics tend to take things as they are and how they are seen. I was surprised by how many queer kids were in my kid’s classes. They have this beautiful low tolerance of trying to fit in with what is expected. There’s so much fluidity. Gender identity is a function of social expectations. Autistics often give no fucks here. It’s beautiful.
Think of small talk (also not a priority for me or my kids). There is no real function to it, so to autistics, it’s pointless. It has a social function, but not a logical or emotional one. Same for deciding on a cis-gendered, homosexual identity, if it’s not something they identify with.
Transitions or Changes
Changes can be really difficult. To get around this, I over inform my kids so they can plan and adjust as needed. I ask them what they want to do and allow them to set boundaries as they need to. Independence isn’t about living alone. It’s about being able to determine how their lives are lived. It’s autonomy and agency.
Socializing
Not every autistic person is super social. If they express wanting to be more social, support them. If they are setting a boundary for who they want around them, accept that too.
Special Interests
This is a super power. My kids can find a topic of interest and learn every nuance about it. They can recite full movies, if it interests them.
Echolalia
Kid1 used to repeat words and questions. He was my “why” boy. He trained me to inform him of everything, and I’m grateful that he did. For us, it meant he was no longer non verbal and that only means it made my life easier. There’s a theme here. This isn’t at all about me.
External Supports
If you are a parent of a child with any kind of special needs, know that teachers and therapists mean well, but they aren’t going to be the very best support for you. They have amazing hearts and want to support your kids. They are absolutely doing what they think is best.
They have appointed times to be with your children. You children will be on their best masked behavior for them. They have time to go to the grocery store, shower and even poop without an audience. Know that they are not the same as you.
Look to other parents. If you find parents that aren’t able to connect or see things the way you do, keep looking. This is like parenting anyone or anything else. Dog parents, plant parents, kid parents and food baby parents will all have different approaches and beliefs. Not every person should be part of your tribe. Your child’s therapists will do what they think is best, but it’s kinda like the wild west that still hasn’t been won. Not every interventionist will follow the same rule book, or have the licensing to be able to perform the functions of a psychologist.
I have horror stories.
One behaviorist came over, handed me a copy of a book, and read the book with me while waving at my kids and being friendly to them.
Another behaviorist rewarded my kid for doing homework by offering a gummy worm for a 3 minute interval of work.
A third behaviorist watched my child play while sitting with me (and that same damned book on ABA therapy) and told me what a terrible situation I was in. She consistently showed up saying she didn’t know how I was doing it all and that I should be falling apart. Surprise! I nearly did fall apart, and she was a mandated reporter who reported me to Child Protective Services for not being a fit parent. She was not a therapist and didn’t understand the weight of her suggestions on my emotional ability to sink or swim.
An Occupational Therapist performed light therapy. He had a light pointer that had different colored crystal attachments. He touched colored light to different parts of my kid’s body, while I watched and thought, “what kind of bullshit is this?”
A behaviorist said my kids might never talk. I’m amused every time they rage quit a game, and curse it out. I think of her and smile.
All of these people were actually PAID Service Providers through Regional Center.
Regional Center
There are 21 Regional Centers all over California. They are there to support people with special needs. Their care is from cradle to the grave. They will be with my kids when I’m no longer able to be. They will set up supports as they need to, as long as your local school district is unwilling or unable to perform those functions.
Individualized Educational Plan
An IEP is a legal contract between parents and schools, and school districts to assess your child’s needs and provide for them. The school’s job is to support your child so they can function and learn in the classroom. They will get out of what they can.
The district will not offer what you don’t know about as long as they can offer the bare minimum. This is why it’s a great idea to look for support from other parents or autistic people. I was denied speech therapy for my non verbal son. They decided he wasn’t speaking, so he didn’t need the therapy.
ABA Therapy
I haven’t found an autistic person that says this is a good thing. ABA therapy will look at external behaviors as an issue, rather than dealing with the needs of the whole child. It’s abusive conversion therapy at worst, and dehumanizing at best. They might focus on stopping the meltdown, instead of figuring out what those triggers are and helping them reinforce boundaries to prevent them from ever getting there. It forces children to ignore their bodies as if their feelings don’t matter in how they behave in front of others.
I learned early on that it’s easiest to run errands with children that are not hungry or tired. ABA might have offered solutions as in: don’t cry and I’ll reward you with a gift. I learned to make sure they were fed and not tired before taking them out. It was a game changer that didn’t punish them for communicating their needs in a way I couldn’t understand initially.
Don’t take my word for it. Click here.
The Podcast
It was a pleasure to join in with Genevieve and her husband Kory, along with Steven Camp of Collaborative Autism on the 61st Floor of their Take the Elevator Podcast.
There’s so much more to say about my children, but I still question whether or not I’m qualified. Please listen in on the podcast. Forgive my sound quality. Apple AirPods are to blame on that one.