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What it’s like when you’ve adjusted to your diagnosis? – The Journey to Self Acceptance Doesn’t End with a Diagnosis

When I was in School, the teachers taught a curriculum that often was uninteresting to me, which (combined with the particular focus of my Autism and the difficulty in controlling attention that came with ADHD) made learning difficult. 

They never asked (or taught) me what I wanted to learn (which wasn’t their fault), but had they asked me about what I was interested in or wanted to know, they would have found that I was inquisitive and could even be attentive to suitable topics. 

I always try to learn from the mistakes my teachers made with me, and I always want to teach my readers about topics that interest them (you). 

I’m creating a new community outside of social media on Substack (where I can have more control over my space), and I hope you’ll join me as a free member (but I also have paid subscriptions if you want access to bonus content).

Also, per request from some of you who weren’t her in March when I did the initial sale: for a limited time the 50% off sale is back (details below).

Currently, for PRIDE MONTH all paid annual subscriptions are 50% off (only $25) your first year when you subscribe now through the end of the month. Both free & paid subscribers will get 2-3 posts each week, with subscribers getting more extended versions and occasional bonus content. Subscribing for free (or paid) is an excellent way to stay up to date with events, such as live streams and meetups.

Today’s topic comes from our Substack Community:

Mosaic of Minds asks: What it’s like when you’ve adjusted to your diagnosis (the journey to self-acceptance doesn’t end with a diagnosis)

So,”What’s it like when you’ve adjusted to your diagnosis?”

Honestly? I’m STILL adjusting. 

I didn’t find out I was Autistic until I was 29 years old, and the ADHD a few years later. I’ve really only known or even suspected I might be NeuroDivergent for the past seven years. That’s only six and a half years of knowledge about my true self – not much when you consider I am working to undo 29 years of trauma from thinking I was NeuroTypical.

I learned the truth about my brain only because I reached a mental and physical health crisis when my world started falling apart. 

When I was first diagnosed Autistic, it was because all of the coping and non-autistic emulation skills that I’d depended on for most of my life had failed. 

There are multiple traumas I was recovering from, one of the first being my lack of boundaries that originated from feelings that I wasn’t enough and therefore needed to give (or be useful and productive) at all times to have value and be worthwhile. 

Growing up being Autistic, Hyperlexic, and ADHD meant that in many things I did (even when it was my best), people would ask me to “try harder” or “apply myself” and “put in more effort.” I kept pushing and pushing myself to do and be more (than I even really wanted to be) because people kept asking more and more from me (than I was capable of).

An entire lifetime of my best not being good enough had me drowning in feelings of inadequacy, anxiety, and unattainable perfectionism that left me frozen and unable to act, start, or finish projects (out of fear they wouldn’t be enough). 

I wasn’t enough, and nothing I did could ever be sufficient either, in the eyes of those around me and in my own mind as well. 

a blurred photo of Lyric, wearing green and sitting on the rivers edge in a forrest with a bridge next to them with white text that reads 'NEURODIVERGENTREBEL.SUBSTACK.COM NEURODIVERGENT What it's like when you've adjusted to your diagnosis? The Journey to Self Acceptance Doesn't End... This journey is never each day will present unique challenges and opportunities for growth I learn and evolve as over because as a person"

One of the first lessons I had to teach myself was: 

NOTHING is PERFECT: to let go of perfectionism and realize when something is done. Because, in my mind, nothing I do is ever done or enough, this has been hard, and I’m still working on it.

I also had to learn:  That I was enough and my best (if I knew it was my best) had to be sufficient (regardless of what other people around me said or thought). 

These two lessons were connected for me, as I needed to learn how to stop before I overworked my projects (OR MYSELF) so that I could learn what my reasonable best was (not the unrealistic and forever out-of-reach “best” people around me expected). 

For most of my life, up until that point, I had been in an endless cycle of burnout (because I didn’t know that my pace, skills, and weaknesses could and should be different from the people around me). I would hit “the wall” where most people would “tap out” and keep pushing, ignoring my need to stop or rest (because that’s what had always been expected of me). 

I had to learn that I was worthy of rest (because rest is needed to keep me “going”). I also had to realize that I don’t have to earn rest and shouldn’t feel guilty for taking time to rest when I’m tired. 

Read more of this post (for free) on Substack.

One thought on “What it’s like when you’ve adjusted to your diagnosis? – The Journey to Self Acceptance Doesn’t End with a Diagnosis

  1. Personally, I find the phrasing of the question to be … off, comsidering the subject matter. (now if it’s a generic one meant to apply to multiple different kinds of dx’es then it’s a little more understandable, but still…) It makes it sound as if autism is a bad thing. As if “adjusting” to the diagnosis is the same as “adjusting” to having a cancer diagnosis, or some other disease, or to having a chronic illness of some sort.

    To me, and to many in the autism community that I’ve heard from over the last few decades, the process of adapting to the knowledge that one is autistic is more about discovery, and freedom. Self-discovery, discovery about others, and the freedom to be oneself, and not have to be “perfect” or NT (which in some ways feels like the same thing). It’s more about validation for one’s difficulties and differences, and about the process of developing self-acceptance and self-compassion. And if one is lucky, and has appropriate supports, it’s also about discovering effective self-advocacy, and agency, and finding one’s place in the world. Learning to thrive instead of just survive.

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