Hey everyone. NeuroRebel here. This week is a listener requested topic. You ask, “What was it like growing up undiscovered, undiagnosed, not knowing that you are Autistic or Neurodivergent?”
Not knowing that I was Autistic, had a very big impact on my life and my experience growing up. I was very aware that I was different, but I didn’t have the vocabulary or an explanation for why or what made me different. This week, I’m going to share my experience. If you’d like to know a little bit more, please stay tuned.
Transcript:
Hey everyone. NeuroRebel here. This week is a listener requested topic.
[00:00:04] You ask, “What was it like growing up undiscovered, undiagnosed, not knowing that you are Autistic or Neurodivergent?”
[00:00:12] This week, I’m going to share my experience. If you’d like to know a little bit more, please stay tuned.
[00:00:52] Not knowing that I was Autistic, had a very big impact on my life and my experience growing up.
[00:01:05] I was very aware that I was different, but I didn’t have the vocabulary or an explanation for why or what made me different.
[00:01:22] When you are Autistic or you are Neurodivergent and you grow up going through neuro-typical systems and you think you are a neuro-typical person your strengths and your weaknesses don’t line up with the neuro-typical people around.
[00:01:41] I found that, because I had areas where I was very skilled. For example, I learned to read when I was only one and a half years old and basically surprised my guardians one day by just reading street signs from the backseat of the car, because I had been teaching myself to read.
[00:02:06] I was obsessed with words and vocabulary from when I was one and two. It was one of my first special interests as they like to say in Autistic people, which I like to say, they’re just my passions.
[00:02:24] Words and vocabulary was one of my first passions as a very, very young person. So here’s little hints here. Right?
[00:02:33] But what we had was people overestimating me because I was learning to read and I must be “such a smart little kid” and so when I went to school, everyone had very high expectations already. There was a high bar that had been set for me going into this system.
[00:02:59] I fell flat because I was Autistic. I didn’t know I was Autistic and the system wasn’t set up for me.
[00:03:13] I thought I was not capable of learning. I thought I was incapable in general because I did so poorly in the school environment.
[00:03:28] Because I also tested really well and did high vocabulary and high marks in so many areas, when I struggled in other areas and needed help, people assumed not that I was struggling, but that I was refusing or being difficult. Instead of thinking “maybe there’s anxiety going on” or “maybe there’s something else going on here”, but there wasn’t another look at what could be going on deeper.
[00:04:02] It was just assumed that I was being stubborn or difficult – rebellious.
[00:04:10] The Neurodivergent Rebel – loud and proud. In your face.
[00:04:18] I wasn’t trying to be rebellious, though. I just saw things a bit differently than the people around me did.
[00:04:25] Another problem with not knowing that I was Autistic for many years of my life was not understanding my needs.
[00:04:35] When I was very young, I did try to advocate for my needs, but I wasn’t successful in getting my needs met.
[00:04:44] For example, I started having migraines, headaches, in first grade when I entered public school because the school had big, bright, fluorescent lighting overhead.
[00:04:58] Every day I would go to the nurse and tell the nurse I had a headache but because I was going to the nurse every day, and I appeared to not want to be in school to the nurse, the nurse told me I just needed to stay in class and not go to the nurse’s office anymore.
[00:05:18] I thought that meant I just had to suffer and shut up and deal with these migraine headaches.
[00:05:26] I suffered in silence for 29 years, having migraine headaches that came and gone.
[00:05:35] These migraine headaches, which are now, I know, sensory overload, lighting, triggered headaches, that started to come on almost every single day when I was around this lighting right around the time I found out I was Autistic. It’s one of the things that led me to being diagnosed.
[00:05:55] Almost 30 years of my life. I had these headaches and I didn’t know why.
[00:06:00] I haven’t had one in a really long time now. I very rarely get them now because, now that I understand I’m Autistic, I’ve removed the trigger from my life.
[00:06:12] This bad lighting. I don’t sit around it. I’ve got my natural light here. I’ve got one light here for the videos, but I won’t be around bright lights very often, very frequently. I limit my time.
[00:06:24] I didn’t understand, when I didn’t know it was Autistic, that my health needs were different than other people.
[00:06:29] I didn’t know that people like me have different health, than neuro-typical people because Autistic health is different.
[00:06:37] We have sensory processing needs to take into account.
[00:06:40] Some of us need more downtime. I have to make sure I am getting enough rest and I’m not burning myself out, because I had this pattern of pushing myself past where I should push myself for many, many, years – constantly teetering on the edge of burnout, because I was holding myself to a neuro-typical standard, because whenever I would try to ask for help people around me would tell me that I “didn’t really need the things I needed” or “that sounds nice, but everybody would like that” or “why are you complaining so much?”
[00:07:24] I like to say people are unintentionally gaslighting me, and we can debate whether or not gaslighting can be unintentional or not, because gaslighting, we think of as this very intentional activity where someone is trying to coerce and manipulate someone into doing something.
[00:07:42] Regardless if this is an intentional behavior or not, it has very similar impacts on a person, where you start to doubt your own reality, doubt your own needs, stop speaking up for yourself, and you stop speaking up for your needs because you internalize these things that are not true.
[00:08:04] People told me the lights weren’t that bright. I knew from my experience they were, but everyone kept telling me they weren’t that bright.
[00:08:10] Not knowing I was Neurodivergent, I didn’t understand that they weren’t that bright to everyone else, but yeah, they were bright to me.
[00:08:17] I just thought I was being a wimp and complaining too much about something that wasn’t that big of a problem and everyone was in pain too. I just need to suck it up, toughen up. That’s my thought.
[00:08:30] I dismissed my own needs, my own wants and desires even – holding myself to a lifestyle and a standard things I didn’t even want or enjoy, because I thought it was what I was supposed to do.
[00:08:47] Learning the truth that I am Autistic – I’m Neurodivergent late in life has allowed me to shift my thinking – the way I think about myself, the way I think about the world, and the way I think about, and interact with other people.
[00:09:13] It was the first step for me to getting myself back on track and the information has been something that allowed me to finally speak up for, and be bold in stating what it is that I need, in order to be successful in life and the various situations I encounter.
[00:09:53] For the first time in my life, I am growing a sense of self compassion, something I really needed.
[00:10:07] It’s easier, sometimes, for some of us, to be compassionate for other people, more so than for our own selves, which is horrible and not a healthy way to be.
[00:10:22] I’ve had to learn to love, respect, and appreciate my weaknesses just as much as my strengths.
[00:10:34] Learning about my Neurodivergence late in life – late -better than never – has been the key that allowed me to start healing and moving on with my life.
[00:10:51] You’ve asked about what it was like growing up, undiscovered – not knowing.
[00:10:56] I’m going to tell you, there are certain aspects of it that have been very traumatic, and hard.
[00:11:05] All of the, not knowing.
[00:11:08] It’s never too late to start the healing process, even in your thirties, forties.
[00:11:14] I know people being diagnosed in their seventies are just learning and discovering in their seventies.
[00:11:19] I actually, I think discovered is a better word because we say diagnosis it’s it’s so medicalized.
[00:11:26] Being diagnosed is a huge privilege that not every Neurodivergent Person, Autistic Person, may be able to access, depending on different factors in their life.
[00:11:36] That’s a whole nother video I’ve actually got, and we’ll link that as a pop-up somewhere.
[00:11:41] Humans, thank you so much for hanging out with me this week. I put out new videos every Wednesday.
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[00:12:50] I will be picking from my favorite topics and I am adding them to my notebook full of video ideas.
[00:12:59] All right, we’ll see you next week bye humans!
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Husband had a similar experience growing up undiagnosed, and also entering school, college and then the workforce without a diagnosis. The social aspect has been particularly hard, because he in his own words felt and knew he was on the outside, but was never quite sure how to fit in or be part of what others were part of, on a social level.
Whether or not it’s intentional, the invalidation or playing down of one’s experience is gaslighting, and given enough time it make one doubt their own reality. I’ve suffered from migraines since I as 11 or 12, and although I was “diagnosed” (yes it’s not a medical condition) 11 years ago when I was 60, it’s much more recent that I’ve realised my migraines are associated with stress brought about by sensory overload.
Now that I know to avoid shopping malls, live shows and movies and anywhere else where lighting and sounds bombard my senses I have halved the number of migraines I get. Last year, a local supermarket started a “quiet hour” once a week where lighting is reduced, audio and illuminated advertising is switched off, even the checkouts are put in silent mode, and no packing of shelves occurs. Now at the ripe old age of 71, I can finally enjoy grocery shopping!
Thank you for this. It also describes my experience. I didn’t figure out that I’m autistic until I was nearly fifty, and it made a huge difference in my life.
As a highly sensitive child, teenager and adult with ASD—an official condition with which I greatly struggled yet of which I was not even aware until I was a half-century old—compounded by a high ACE score, I largely learned this for myself from my own substance (ab)use experience. The self-medicating method I utilized during most of my pre-teen years, however, was eating.
(Autism spectrum disorder accompanied by notable adverse childhood experience trauma can readily lead to chronic substance abuse as a form of self-medicating. If the adolescent is also highly sensitive, both the drug-induced euphoria and, conversely, the come-down effect or return to their burdensome reality will be heightened thus making the substance-use more addicting.)
Resultantly, I strongly feel that not only should all school teachers have received ASD training, but that there should further be an inclusion in standard high school curriculum of a child development course which in part would also teach students about the often-debilitating condition.
It would explain to students how, among other aspects of the condition, people with ASD (including those with higher functioning autism) are often deemed willfully ‘difficult’ and socially incongruent — and mistreated accordingly — when in fact such behavior is really not a choice. Maybe as a result, students with ASD feel compelled to “camouflage,” a term used to describe their pretending to naturally fit in, which is known to cause their already high anxiety and/or depression levels to worsen.
Perhaps not surprising, I have yet to find a blog that dares to delve into (what I call) the very problematic perfect storm of psychological/emotional dysfunction — i.e. a debilitating combination of ASD and significant ACE trauma (and perhaps even high sensitivity) that results in substance abuse.