[00:00:01] NeuroRebel here, and this week is a highly requested video from you. I am going to share some of the hints that I was Autistic growing up that were missed. So if this interests you and you are one of the ones that has been asking about this, please stay tuned as we dive in.
[00:00:57] So when I was very young, I was extremely content playing on my own and I didn’t invite my mom or others to play with me. In fact, there’s a video of me when I’m very young and I am. Playing on my own very happily and my mother is trying desperately to get me to engage with her by saying my name and making all of these fun noises and putting a fluffy little duck in my face and trying to get my attention with this big stuffed toy and I am completely ignoring her. Not interested. Not having that. I instead am very focused on the wheels and the buttons and the textures and the mechanics of the toy in front of me in this video.
[00:01:36] That was one sign when I was very, very young before I even started speaking that I was Autistic.
[00:01:45] Autistic people tend to have “irregularities” and I put that in air quotes in the way we communicate compared to our neuro-typical or non-Autistic peers.
[00:01:56] I was a highly verbal child and I had an advanced vocabulary. I also started spontaneously reading at the age of one and a half. I spoke in a very formal and very adult way, giving the impression to many that I was wise beyond my years, despite actually being very immature in a lot of ways.
[00:02:18] As I grew up, I had a tendency to talk over people, dominating conversations and would often dump information on my favorite topics – dogs, and animals, to anyone who would listen, whether they were interested in what I had to say more not. I actually struggled to know if people were interested in what I had to say.
[00:02:40] My interests were very intense. I couldn’t just like dogs. I had to know every dog breed. There was, I had to know everything about dogs and I had to know as much information as I could possibly find and when I take up an interest, it is often all consuming, like my blog is today.
[00:03:03] I remember struggling to moderate my voice. It seemed as if I was always either too loud or not speaking up enough to be heard. I still struggle with this sometimes, especially when placing food orders and speaking up to people at food counters when alone I would speak or sing to myself, verbal echolelea and stimming.
[00:03:23] This is actually something I still do today as well – make little sounds and repeat things that I’ve heard from movies, TVs, or songs and I also will listen to the same song on repeat and as a child, I would listen to the same songs and audio books and cassette tapes on repeat, memorizing them word for word.
[00:03:44] We often talk about autistic people and eye contact and although some autistic people can totally give eye contact, have no problems with eye contact. I haven’t felt that way.
[00:03:54] Eye contact, to me, has always felt like a very intimate act and I rarely give people eye contact unless I know them very well, but even then I am often faking eye contact by looking at someone’s face, maybe their nose or their eyebrow, instead of actually looking them in the eye. Generally, you can also get away with just looking in someone’s general direction.
[00:04:19] Although I am learning it now in my thirties, I grew up not reading or understanding the body language and facial expressions of other people. This is a skill I am currently learning more, since discovering I was autistic at the age of 29. It is not a skill that is natural to me and requires a lot of work even now.
[00:04:43] When you are interacting with people socially and trying to communicate with them and you don’t pick up on their facial expressions or their body language, it can leave your interactions with other people to be very puzzling and uneasy.
[00:04:59] Also, it can open the door for many miscommunications and that could be a part of why throughout my life, I have struggled to develop and maintain relationships with other people.
[00:05:12] In school, growing up, I would pick one friend and put all of my energy on that friend, all of my eggs in one basket, so to say.
[00:05:21] Which often didn’t work out well, because on multiple occasions in my life, the person I would pick, my one person, would leave and move or change schools leaving me all alone with nobody to talk to and then again, struggling to find a new friend and meet a new person.
[00:05:39] And starting relationships, especially new relationships, is always difficult, even now. People are hard to read, new people, especially. I really like the predictability of people I’ve known for a long time. I like knowing what I can expect from people and new people can be nerve-wracking unpredictable and anxiety inducing – in my opinion.
[00:06:05] Sometimes socializing just isn’t worth the effort to me. You know? It’s like, Who needs the extra stress and expectations on top of everything else?
[00:06:20] My sensory sensitivities and sensory processing difficulties should have been a very big clue that I was Autistic. I was a sensory seeker, jumping, spinning, climbing, hanging off of anything I could climb.
[00:06:38] I was a child that was always in motion, flipping, flapping bouncing about, I was also a picky eater. I only ate a very limited diet of mostly white and beige foods and part of my sensory system is having a very severe lighting sensitivity. That means for me, prolonged exposure to fluorescent lighting can trigger really horrific neurological events, such as sensory overload and migraines.
[00:07:09] Since learning about this, when I found out I was Autistic at the age of 29, I stopped allowing myself to be exposed to things that gave me sensory overload and my health has drastically improved.
[00:07:23] I didn’t know I was Autistic for a very large portion of my life, and I am glad I know the truth now, but it would have been nice to find things out sooner.
[00:07:33] When you are a neurodivergent person living in a world full of neuro-typical people, even if you don’t have words for what makes you different, you know, you’re different. You might feel yourself struggling to do things that other people don’t struggle with and wonder why these “simple tasks” are so hard for you.
[00:07:57] And I put many labels on myself throughout the years, because when you don’t have the correct label, you find all of these other labels to put in their place. Inadequate, not good enough defective broken. And these are labels that are very hard on self-worth.
[00:08:14] Learning that I’m autistic has allowed me to accept myself work with and compensate for my difficulties and it was also highlighted where I get some of my biggest strengths.
[00:08:28] I no longer am ashamed when I struggled to do something that comes easily to someone else, because I see that there is balance and now realize that there are certain things that I do that are hard for most people.
[00:08:42] Honestly, I’m grateful to have even been diagnosed at all because the fact is as we age, it becomes less and less likely that we may be discovered as Autistic.
[00:08:53] I was late discovered largely in part to the fact that I think a lot of you, things that make me autistic are very normal if you look around at the other members of my family and I am the only one who has a formal autism diagnosis despite this. This is common in families because autism is genetic where parents may see their child go that’s normal. I did that.
[00:09:22] Well. Yeah, you did that and there’s nothing wrong with it, but are you seeing the connection?
[00:09:27] We also have problems with how autism is diagnosed. One, a lot of the diagnostic language is very negative, pathologized and stigmatized.
[00:09:39] When it was suggested to my guardians that I might have something going on at difference. It was presented in a very negative light and so they bristled up and said, no, you’re not testing this child. There’s nothing wrong with this child.
[00:09:56]There wasn’t something wrong with me. There was something different going on, but because of all of this stigma, we didn’t go any further to find this out when I was younger.
[00:10:07] Another problem we see is that autism is an invisible difference. Our differences in perception, thinking style and sensory processing for some of us can be easily hidden through autistic masking.
[00:10:18] We can be trained that our struggles are unreasonable and our needs are unreasonable and then we may stop sharing them or mask and hide them and that makes it hard for us to be diagnosed as adults – if we are masking compensating and hiding our struggles as well. Lots of minority groups and people who are low income will also struggle to access diagnosis. For many of us who grew up low income, the signs of being Autistic may have been missed or labeled as us having behavioral problems instead of being recognized for having legitimate struggles.
[00:10:58] In school, I was a mediocre student at best, barely scraping by many of my classes, and was often being scolded by my teachers for being disruptive and oppositional. My questioning nature that was cherished at home often didn’t translate well into my interactions with teachers and authority figures and this led me to many misunderstandings over the years.
[00:11:26] Honestly, these are just a few of, many of the problems that we have with the way autism is identified or diagnosed through the formal diagnostic process. And because of this being diagnosed is something that not all Autistic people will be able to do.
[00:11:44] I feel like I am very lucky to have been given this information when I was 29. Yes, I would have loved to know sooner, but I’m grateful to know at all. I have met other Autistic adults that have found out even much later in life than 29. I’ve met Autistic people who have found out in their forties, fifties, sixties, seventies.
[00:12:05] So we’re out there and there’s this whole missing generation of autistic people who are my age in our thirties and older, who may not have been diagnosed.
[00:12:17] All right, everyone. If you found this video, helpful, educational, useful, please, please, please consider sharing and hopefully someone else, you know, will find it useful, helpful, and educational too.
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[00:13:25] Thank you guys. I will talk to you all next week. Bye!
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