I had the extreme pleasure of being invited to speak at the 10th annual Honestly Autism Day on April 6, 2019. The conference was amazing. I encourage you to check it out if you are ever in the area.
Here is some BTS footage of the Q&A from the first presentation. If you did not catch the live presentation, it is currently up on Facebook. Once the transcription is complete, the longer live video will be published on YouTube and the Neurodivergent Rebel blog.
I’m not going to be still, so I hope that doesn’t distract anyone too much. I’m an autistic adult. My name’s Christa Holmans, and I’m really thrilled to be having the opportunity to share this information with you today. Generally, what I find with the medical language is that it tends to remove everything that is good, human, and even beautiful within the autistic experience.
So, depending on the source, and I could not nail down a good number for this fact, but I’ve seen estimates that 20-30% of autistic people have limited to no verbal speech. But I want to add that this doesn’t mean that they can’t communicate, okay? That’s really important, because sometimes they just need to be given the opportunity. People assume they can’t, and that’s just horrible.
However, it is a myth that autistic people cannot be articulate. I stand out. I have been standing out my entire life, and nothing makes me more miserable than trying to blend in.
Let’s go back to that term “special interest” because that one gets me. That’s why I threw these air quotes in there, okay? I think passion, you know how I was saying earlier, passion is a much better term. But we see it a lot when describing autism using pathological language. I’m passionate about autism, the workplace, office culture. When I’m not an autistic person who has an area of expertise, it’s not pathologized. It really does make me sad when I hear autistic passion described using pathologizing language. “Obsessed” … “Fixated” … “Repetitive behaviors.” Autistic passion is where innovation happens, okay?
Before my diagnosis, it was as if everyone around me knew “the rules,” social rules, mostly, but I didn’t. Someone forgot to tell me these rules, but I was constantly still expected to know them. I found the answers to a lot of my questions primarily searching three hashtags on the internet, and everything started on Twitter. There’s a lot of autistic people on Twitter. A lot. It’s weird. “Well, where are all the autistic people?” “Oh, there’re on Twitter.” Three hashtags. #actuallyautistic That’s the main one. And for those of you who are not autistic, go read through there. Don’t tweet using that tweet, because the tweet means that you are an autistic person tweeting. So, don’t use it, but please read it. Brilliant stuff in there. Great. I encourage everyone to read anything you find under #actuallyautistic because you will learn a lot.
The other one, I saw there was a problem because of what I mentioned earlier. You don’t want non-autistic people using that #actuallyautistic tag because that’s like our Bat Signal. That’s how we find each other on the internet. Like the Google search and all that, it doesn’t prioritize autistic voices. It prioritizes big news outlets, medical sites, and big organizations. So I created #askingautistics because there was a really big issue where we had allies out there who wanted to engage with the community, and they had questions, and they couldn’t use the #actuallyautistic tag. So that’s where we have #askingautistics and that hashtag has been around for I think over two years now. That’s a really great tag. If you’re an autistic person or not, use the #askingautistics tag. That tag is for anyone who wants to learn from autistic people.
And then the other tag that’s been around for a bit longer is #neurodiversity. And that #neurodiversity is a big umbrella which includes people with ADHD, autism, dyspraxia, Tourette’s, dyslexia … it’s a big, big umbrella.
You know, two and a half years ago, I was just Christa. I was just a girl who was always way too hard on herself. Now I’m the Neurodivergent Rebel. I’m proudly and unapologetically autistic. I amplify autistic voices and I hope to show the world that autistic is just another way of being.
Do you have questions? Yes?
Q: You’ve really put a lot of thought into kinds of coping mechanisms and thought on how to deal with situations, and that’s great. How do you kind of, when other people are saying “Why are you doing this, why are you doing that?” do you find yourself more in a position where they’re not necessarily asking that because you’ve kind of mowed into yourself, or how do you submerge yourself into those areas that you’re not going to be able to deal with this?
A: If I’m having a meltdown and people are asking me why I’m doing this, it’s probably going to freak me out. I’m going to be more upset, honestly. That’s why I’m going to remove myself from the situation because I’m having a meltdown. I need someone to kind of be there and be a supporter, but if someone’s like “Grow up. What are you doing? Why are you acting like this?” it’s not helpful to me. And so, that’s why I say: “I need to go be somewhere alone where I can take care of myself.” It is hard sometimes to communicate if you’re in that place. It really is.
No, that’s really good. That’s a good one. Yeah. Other people like what you can do, it’s a really good thing is if you – I’ve seen these note cards. Has anyone seen the little communication cards? Those communication cards are great. When you’re able to communicate, then maybe you write those communication cards so when someone asks you, you can hand them the cards. This is what’s happening, because I promise you – I’m not going to be able to say it “My brain is not able to process information right now and I’m having a sensory overload.” I’m not going to be able to tell you all of that; I’m going to be a crying, hysterical mess.
Q: I know you mentioned how you were struggling in school in the beginning in like first or second grade. How did the rest of your school lifetime go? Were you still in mainstream classes, or did they have to make changes?
A: Yeah, so I spent time in all three classrooms; I spent time in special ed. in elementary school. I spent time in mainstream in elementary, middle, and high school. And I actually spent time in gifted classes in high school as well. And I was – teachers would describe me as the student who just kind of did their best to get by. I don’t know. I was struggling. It wasn’t ever easy. It really wasn’t. And I’ve always kind of struggled with authority a little bit – that Rebel thing is kind of because my mother has always kind of called me a rebel. I was never trying to be a rebel. I’m not trying to be a rebel, but people always wanted to call me “You rebel. You rebel.” So, I’m just going to embrace it.
Ooh yeah. So, it can be harder on a little kid, but the difference from the inside out would be the tantrum – “I want my way; I’m throwing a tantrum to get my way.” The overload is – for the non-autistic folk here today, I don’t know if anyone has ever had a panic attack. It feels a little bit like a panic attack. You’re not really in control, and you’re definitely not worried about controlling other people, although people might think you’re just trying to get attention. Probably not. If someone’s throwing a tantrum, I would assume if you walk away, they’re probably going to stop. But if somebody if having an overload, they’re probably going to keep overloading for a while until they calm themselves down because it’s not about the other person. Whereas the tantrum is about you, the overload is completely nothing to do with you – you’re just there.
Q: But how late is “late” to be able to diagnose this?
A: I wish I could have had the information early enough but, double edged sword back when I would have been diagnosed back in elementary school … I don’t know if it would have changed who I am as a person, if people would have treated me differently. But I know we have an entire generation of lost autistic adults. I’m 32 now. I was diagnosed at 29, and that was really late for me. People who say they were diagnosed in their teens, a lot of them say that was late for them too. A lot of women especially, are late diagnosed. We have a whole generation of women my parents’ age and my grandparents’ age who just never would have been diagnosed, and they’re not diagnosed – a lot of them are never diagnosed. Although I do know a few women who have been diagnosed in their 50s. Can you imagine going that long, just feeling different, not knowing why. Because that’s what it’s like – you feel different. You don’t know why. You’re like: “Why can everyone else do this? Why is this easy for everyone else? Why can’t I just get that right?” And so, I really couldn’t put those thoughts to bed until I had that diagnosis and I understood what that meant for me and I accepted it. It was a process, and it wasn’t instant either. It took a couple years to really …
Q: Can the feeling of sensory overload and the start of having a meltdown come on without a root, for absolutely no reason – and I ask because my son is a head banger and he has meltdowns and we can’t figure out the root. He could be as happy as anything…
A: More than likely you may not know what the reason is. So, for example, sometimes if I have a meltdown, someone will think “That was a little, silly thing that set you off.” But it wasn’t even the thing that set me off. It was the accumulation of all the things that had been happening for the past week, and that was just the final straw kind of a thing. It might be that maybe it was something little – but maybe it was a hard week, or maybe a hard day and it just kind of added up, and it’s just like “I can’t take it anymore.” So maybe. It’s hard to say. Everyone is different.
Are there any more questions? Awesome. Everyone, thank you so much for being here. I really appreciate it. Thank you.