This article, written by an allay of Autistic voices and I am Cadence, highlights the importance of listening to autistic voices – including Autistic children’s voices. It is reprinted here with permission.
Last night, my pre-teen daughter was having trouble sleeping, so she asked me to join her in the guest room with our pets. It was really late, I was very tired, but she was so keen to talk in the dark that I encouraged her to share what was on her mind.
As we snuggled together at 12:00am, she asked me, “How did you feel when I was first diagnosed?”
She knows that I am passionately pro-acceptance now and have been for some time, but that wasn’t the case a decade ago.
I started telling her how little my husband and I knew about autism at the time. I told her about the doom and gloom narrative that prevailed when she was diagnosed and how her early intervention provider considered “indistinguishable from their peers” as a best possible outcome for a girl like her.
That opened up the floodgates.
In no particular order, here are some things that my daughter remembers, “but I didn’t have the words to tell you at the time.” These memories are shared here with her permission.
* My daughter remembers being “taught how to play” by therapists, and she remembers being quite upset about that because “It’s PLAY! There is no right way or wrong way to PLAY, and I remember being so frustrated, but I didn’t have the words to tell you.” Last night wasn’t the first time she had shared that frustration.
* She remembers us hosting and going to a lot of birthday parties when she was young — many of which she actually didn’t enjoy — “but I didn’t have the words to tell you.” I look back now and realise that a lot of things I promoted when she was young were probably more about making ME feel included than doing things that SHE actually enjoyed.
* She remembers what it felt like to hear doctors, therapists, teachers and other adults talk about her — and not necessarily in positive terms — as if she couldn’t understand their words and their tone. In particular, she remembers with great clarity another mother of an Autistic child complaining to me about how hard it was raising kids like ours.
* She remembers what it felt like when a teacher would suggest that a group of children include her, “but I knew they didn’t really want me in their friendship group, so once the teacher walked away, they would ignore me.”
* She remembers having an aide (who we funded) whose primary focus seemed to be on preventing our daughter from being disruptive. She remembers being humiliated in front of her peers when the aide would hold her in a bear hug or follow her to the bathroom. “She never seemed to try to figure out WHY I was upset and instead was more worried about making me ‘behave.'” She didn’t have the words to tell me at the time.
* She remembers running out of her classroom in Year 2 (sparking the need for the aforementioned aide) “not because I wanted to be bad but because I just needed a break.”
* But she also remembers no longer needing that aide in Year 4 “because my teacher really understood me.”
* My daughter remembers being bullied by a group of boys yet not having her concerns taken seriously because these kids were the masters of stealth targeting. They stole her confidence and feelings of self worth.
* She remembers feeling relieved when she was put in class with the good friends who accepted her, when I told her teachers that we would be opting her out of homework, and when she wasn’t forced to go on stage to be in the dance gala or run in the sports carnival (“I didn’t need another reason to be humiliated.”)
* She also remembers feeling very loved and safe at home (Whew!)
My husband and I are loving parents, and we try to make the best decisions possible for our kids with the best information we have at the time. Having said that, wow, have we made some stumbles along the way.
Thankfully, my daughter is quite philosophical about those things. For instance, when I apologised about not moving schools sooner, she said, “But I DO have some good memories, and if you had pulled me out early in Year 5, I wouldn’t have met [good friend]” who arrived that year.
Many hours later, I am still replaying our heartfelt conversation in my mind.
It is such an awesome responsibility to raise and mold an impressionable young person, especially a girl who isn’t like most of her peers. I look back and wish that I had handled so many things differently. It makes me wonder how many other soul crushing things my daughter encountered but “didn’t have the words to tell [me]” at the time.
This is the reason why I am so zealous about listening to and learning from Autistic voices and ensuring that our daughter has Autistic friends and mentors in her life. I have benefited enormously from their friendship and guidance as well. I think that if my husband and I had tapped into the Autistic community much earlier, some of our parenting stumbles would have been avoided all together or at least greatly cushioned.
Still, I don’t want to beat myself up with a guilt trip. That wouldn’t be productive. Instead, I hope that other parents and carers can learn from our mistakes. I know that I have!
Last night’s discussion reminded me that our daughters are listening and internalising all of the signals that we as parents and that society are sending them. I am determined to do what I can to make my daughter’s immediate environment AND the broader world around us a safer, more accepting, embracing and respectful place.
Other I am Cadence parenting articles you may find helpful:
- Click here to read about inflexible / rigid thinking patterns, including when inflexible thinking can ‘look like’ bold face lying’, in the article “The Truth about Lying”
- To read more on how Autistic children internalise what they hear from ourselves, other parents, from media and in the general community, read Cadence’s letter and associated article “Are your Words Harming Autistic Children“.
- Click here to read about one approach to responding to negative public commentary about your child, in the article “Sometimes you have to be a Dog!”