Getting an Autism Diagnosis in Adulthood
2020 was a lot. So many things have happened, it’s been hard to keep from sinking. With everything that’s transpired, one thing, above all, has been life changing. I received an Autism Spectrum Disorder diagnosis.
At 30 years old, I finally have understanding into my entire life experience thus far.
What does Autism mean?
I must admit, my prior view of autism was extremely limited and ableist. There were people, mostly boys, who were clearly autistic, stereotypically so, and I wouldn’t have put myself into the same category as them. I blame this narrow view on societal prejudices and media depictions. Because I don’t fit the mold, I’ve struggled so long. No one around me had any idea what to look for, and I didn’t have any way to ask for help.
What is autism, really? A neurological developmental condition that affects social skills, communication, and self-regulation. Am I simplifying? Maybe. But, at the base, this is all autism is.
How it presents can vary wildly across all aspects of how a person interacts with the world. This is why it’s called a Spectrum. Not linear but expansive. Every trait presenting at some intensity, from domineering to nonexistent.
Because of this, there is no clear description of an autistic. There is no look, no behavior pattern, that qualifies you as autistic. It’s about a collective experience interacting with the world. While that interaction can make it feel like autism is a problem that needs to be fixed, it is important to understand there isn’t anything inherently disordering about autism.
Many prefer the term Autism Spectrum Condition. It is a state of being, and it is society’s rigid expectations that makes living as an autistic challenging.
Why bother with an autism diagnosis in adulthood?
Since I made it 30 years without a diagnosis, the question comes up: Why bother with a diagnosis? What difference will it make?
Most importantly, diagnosis opens up an expanse of new communication and language tools. I’ve struggled with being understood my entire life. A continuous battle of trying to explain myself and those around me not quite understanding my point, my reasoning, or my needs.
The more I learn about autism the more I can pinpoint why those disconnects are happening and I can vocalize them. Misunderstandings clear up quicker, preferences are differentiated from needs, and communication is less daunting.
Because of language clarity, I receive more support in return.
The most personal aspect of my diagnosis is forgiveness. I’ve internalized my “shortcomings” my entire life. Social disconnect, tone of voice, clumsiness, procrastination, selfishness… All my worst traits existed because I wasn’t trying hard enough, wasn’t working hard enough, wasn’t considerate enough or pleasant enough.
But all those failures? Autistic traits inherent to my very makeup. Each of them containing strengths that others don’t have: Detailed observation skills, authenticity and truthfulness, sustained focus… I could go on. Because of my autism diagnosis, I can relax the pressure I feel to change. I can forgive my perceived shortcomings and focus instead on my strengths.
Accepting that some things are just me, that I’m not doing something wrong, am actually functioning exactly how I’m built to, is liberating. It is that understanding of me for me, that makes a diagnosis worth it, no matter how late it comes.
Reframing everything
With diagnosis comes a re-evaluation of every moment since early childhood. It has been amazing, as I learn what to look for. Looking at all my memories through a new lens feels like every moment that didn’t sit right has clicked into place.
Things as simple as my preferences in pencil grips in elementary school, or the in-depth analysis I did in college, trying to find the right pen, are directly linked to my desire to accommodate being autistic. Even my foray into bullet journaling stemmed from a need that standard tools and systems couldn’t meet.
I have so many memories that I’ve been cataloguing with relation to my diagnosis. It’s been an exhausting but fulfilling process. I feel seen, I have understanding into why, and with every new discovery I’m feeling more confident than ever with who I am.
What now?
I struggled a lot, deciding if I should be open about my diagnosis. But authenticity is incredibly important to me, and I am autistic whether I talk about it or not. It will color everything from this point on, even as I write about other topics.
Plan Another Day is refocusing, but not fundamentally changing. I’ll have a post up soon detailing what this means. But to summarize, I’m excited to write again, and share all the ways I’ve learned to adapt and struggled to make things work.
Hopefully, my insights into managing my life can help others, autistic or not. I’ve got many more journaling tips to share, but I’m expanding beyond shopping guides and how-tos.
Breaking down how to create personalized systems, find tools that are the best fit, and create sustainability on the individual level feels like a more worthy effort. I hope you’ll follow along and take from my experience what you can. I have so much more to share.
In the mean time, I’ve linked to some other autistic writers below who I resonate deeply with. There’s a whole community of people with similar experiences, and through our combined voices, hopefully, we’ll be able to bring about better understanding.
Allyship
What can neurotypical/non-autistic/allistic people do to help?
First and foremost, listen. Listen to the experiences of autistic people.
Accept that we are different. Find a way to meet us where we are. I can guarantee many autistics are bending over backwards to try and meet non-autistics where they are. It’s exhausting, share the workload.
Learn more from other autistics
Please leave any questions, comments, or ideas for future topics in the comments. Or feel free to send me a private message.
I’m excited to delve into this topic further.
Thanks for the link.
I received your form and responded by email.
Thanks for providing such a great resource. It’s incredible to find so many people with similar experiences, especially when just starting to things out.