The Age Someone Gets Diagnosed With Autism Matters
This article can also be viewed at https://medium.com/non-monetized-together/the-age-someone-gets-diagnosed-with-autism-matters-086bdb729d2e.
The autism experience can mean many different things, and the age of diagnosis is one of the reasons for this. As someone who was diagnosed early, I noticed that my life experience is very different from people who were diagnosed as adults.
For example, I don’t have a negative attitude towards masking, or hiding my autistic traits, because I’ve always known that it’s something I can turn off and on when necessary.
People who were diagnosed as adults did not have that knowledge growing up. Since they didn’t know they were autistic, they didn’t know that too much masking can be unhealthy for them. As a result, they usually tried masking all the time so they could fit into society. This is why they dislike masking so much.
Another difference is that I’m content with the fact that I need to work harder than neurotypicals in order to catch up to them. It’s my default way of approaching my life.
Yet this has a more negative connotation for those diagnosed late. When someone doesn’t know they have a neurological condition, they can feel frustrated and confused as to why they aren’t as successful as their peers who put in the same amount of effort and come from a similar background. It’s only when they get diagnosed do they realize they have to put in more effort.
Even after they find this out, it’s disheartening that they spent all those years unaware of this, so they can be bitter about the fact that they need to try harder.
Since I was diagnosed early, I was fortunate enough not to have this experience, and so there’s no reason for me to have a problem with putting in extra effort.
There’s one more difference I’ll share with you. Because I’m autistic, I had trouble figuring things out on my own as a child, so I had to rely a lot on listening to what adults had to say in order to learn about how the world works. This helped me get in the habit of being eager to hear other people’s perspectives and make something meaningful from them. This interest of mine inspired me to create Nonmonetized Together.
Meanwhile, those who were diagnosed late grew up surrounded by people who weren’t considering their autistic perspective when talking to them. These autistic people weren’t getting much use out of what society had to tell them, and this could result in them not being as open to hearing what others have to say.
So don’t ever compare me to people who get diagnosed as adults. My life is a lot different than theirs.
EDIT: I just wanted to mention how grateful I am that this article got some discussion and that it resonated with people. It has restored my hope in Nonmonetized Together, the movement this article is a part of. I was originally planning on ending the Nonmonetized Together publication in the near future because even though it was getting a lot of views, very few people were reacting to the articles or getting involved in the Nonmonetized Together community. I began questioning whether people were interested in using the original concepts behind Nonmonetized Together to achieve their own goals. Because of the response this article has gotten from readers, I have reversed my decision and decided to continue posting on here. Thank you!
To learn about Nonmonetized Together, read this: https://write.as/non-monetized-together/about-our-blog-tired-of-internet-drama-and-fakeness
#Autism #LifeExperience #Neurodiversity #Childhood
Medium comments:
I guess late diagnosed people are not bitter because they only found out late that they need to work much harder, they are bitter because of missed opportunities and wrong life choices, because of not knowing what was a realistic goal.
I would have chosen some other degree to pursue and I don’t know if having 3 kids was smart… I’ve got the wrong career and I’ve hated myself not being able to give love only to my 3 kids.Lotjeknorrie
Yeah, that's a better way of putting it. It's obvious to someone when they're falling behind others, what's less obvious is what they need to do next. Thank you for explaining that.
Kevin the Nonmonetized
For myself it's the 50 years of exploitation by others that's been challenging to navigate with late diagnosis. Set patterns in relationship that I'm now having to disrupt as I reclaim aspects of self and establish boundaries. “No, it was not acceptable for you to strew my private medical information across the family dinner table when I was at home experiencing catatonia and yes, I did call out your profound lack of discretion to everyone who didn't stop you, and no, I won't apologize for everyone's collective failure of will and no, I won't clean up the mess you've all made about me without me before you're done paying the consequences of your own actions.” Fun stuff. I can't do math for shit but I'm balancing accounts with surgical precision and it'll be a bit before the dust settles in this long-lost ok-corral.
bobbipatriciasmith
I'd love to help you out because I'm trying to make Nonmonetized Together a community with a more equitable social dynamic than the rest of the Internet. I just have no idea what you're talking about here.
Kevin the Nonmonetized
sorry, I meant social exploitation. The link below is to an academic paper. My comment is about narcissistic-style abuse where living undiagnosed and unaware has lead to a pattern of interactions where I've been cast as a “prop” for others. I've spent my whole life assuming other people thought and acted similarily to me – honest, obsessively ethical, limited capacity for bystander effect, etc. Previously I may have interpreted having my private medical information dissected at a dinner I wasn't in attendance for as internally demoralizing (shame spiral of RSD) while writing it off as the actions of people who cared imperfectly. No. That is not what was happening. With my diagnosis and consequent understanding of different brain processes, ways of making meaning, ways of communicating, etc, and through the lens of 20+ years of historical relationship review, I now understand that dinner table scene differently. The family member who lacked discretion used the details of my recent spectacular psychosis (brought on by the pernicious effects of over-masking that you touch on) as a prop to cue the listeners to the image she was hoping to present to them about herself. Every time she served up yet another salacious detail of my deeply private experience, she could perform empathy, thoughtfulness, and concern. And the listening family members took those cues and ran with them, engaging in a similar vein with a similar intent. People can absolutely be trusted but I didn't understand before diagnosis how that trust needs to be approached. As I build understanding of my autistic brain and excise narcissist after narcissist from my life, I am learning that I need to build trust with myself, first. I must approach every individual not from the hypervigilant watchful position of “what do you need that I can give before you even have to ask and so you're not mad at me” which is where I used to live, but rather from the position of “what are my strengths and where do I want to offer them while caring for myself in the process”. Thank christ the psychosis got me on disability cuz this is slooooooow going and I need all day every day to reflect and integrate. In between sharpening my knives, I MEAN EXCISING freudian slip I swear.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5980973/
bobbipatriciasmith
Speaking for myself (but I think probably many others as well), it's not that we “dislike” masking so much. It's the damage that runs through our lives and our selves because of doing it non-stop, with no other option available. It's really good to hear you grew up knowing it was something you'd need to do at times, but then turn off, so you got the essential “time off” from masking. That helps me have some hope I may learn to do that myself. But if you do anything too long without a break (run, hold your breath) there are negative consequences. Some of us have been holding our breath for decades (5 going on 6 in my case).
Lynn Springle
Exactly
Kevin the Nonmonetized
Even after they find this out, it’s disheartening that they spent all those years unaware of this, so they can be bitter about the fact that they need to try harder.
Accurate.
Jim Irion
I certainly did, as for easily it can be seen what I highlighted being late diagnosed myself.
I’m a mental health advocate. Last night I published my review of what I’ve learned. I would be most grateful if you, Kevin, would give it a look at your convenience. It will surely broaden your already impressive knowledge.
“Following in an Advocate’s Footsteps”
Jim Irion
I think that was a good article, would you be interested in joining Nonmonetized Together as an author?
Kevin the Nonmonetized
I’m rather inexperienced when it comes to Medium. So, a question or two to start if I may?
First, can any of the writing I’ve already done be added? Because of my lack of economic integration, at age 42 after my late autism diagnosis led to that, I’m at a crossroads with what to do. I really don’t know. Because of the late diagnosis trauma I uncovered last June 8th, I am now less able to write and highly stressed..
It doesn’t help that, aside from sharing my writing on Twitter (1,500 followers), my writing footprint is small here. I’m sitting in two informal theories that could upend autism knowledge. I lack the experience and connections to reach people as well.
Jim Irion
Submit whatever you want and I'll let you know if you need to make any changes 😊
Kevin the Nonmonetized
How should I? Email? Or list the titles here?
Jim Irion
I will add you as an author now, and then you will be able to submit to Nonmonetized Together.
Kevin the Nonmonetized
I don’t see an option to submit, for example, via a List. Haven’t received anything via email..
Jim Irion
Open your story, go to the edit page, click the three dots on the top of the screen, and head to “add to publication.” You should see Nonmonetized Together. Click it and it will send your story to me.
Kevin the Nonmonetized
Note:
The article about autism and women has a couple sentences removed and replaced with asterisks. I haven’t replaced it with research data yet by an autistic female researcher.
Jim Irion
I'm sorry, I accidentally published that article. I removed it from Nonmonetized Together, so now it's publicly available at jimiron.medium.com. There's nothing I can do to remove it from being publicly available, so if you want to do that, you will have to do it on your own. Also, you will have to resubmit the article on Nonmonetized Together.
Kevin the Nonmonetized
Could you explain this again? I’m a bit lost.. Autism and women, correct? I thought it was publicly available already.
Jim Irion
Maybe it was. You would know better than me. But you'll have to resubmit it to Nonmonetized Together to get it published there
Kevin the Nonmonetized
I re-submitted both the Time to Connect the Patterns and Part 5 on autism and women. I took out the bar graph. And I rewrote the text I removed from Part 5. Sufficiently to fill the space of what was removed and the original publication date.
That was yesterday.
You should have both.Jim Irion
[Comment section continued here](https://write.as/jbb5jugmcex7sk2t.md)
Okay. It worked and now I think I know what the next stage of publishing actually looks like from the entry point of view. Up to now, I had only seen writers publishing through publishers. I didn’t know how to gain entry to any of them.
Next questions. What happens now? Limitations? Can these be published with more than one outlet? Is this actual publishing or just adding stories to a List?
I held back some, such as my two informal theories, until I understand more about publishing. I would prefer my writing remain unedited. I already run them through a grammar checker, as well.
Jim Irion
What happens now?
I'll read your articles, and if they're a good match for the publication, I'll publish them. If not, I can explain what needs to be changed for the article to be published. In the case of your article about autism and women, I will wait until you finish writing it before I read it.
Limitations? Can these be published with more than one outlet?
Nonmonetized Together operates across two platforms: Medium and write.as. If you want me to share your posts on write.as, please let me know. I won't publish your article onto write.as unless you specifically ask me to.
Is this actual publishing or just adding stories to a list?
Yes, these stories will be added to Nonmonetized Together, which is its own publication.
Kevin the Nonmonetized
More than one outlet wasn’t necessarily meant publications of yours. I meant any others. I don’t know the rules or etiquette for that. Some publishers retain all rights. Some don’t seem to..
Jim Irion
You can publish it through other outlets, sure
Kevin the Nonmonetized
It took years to get that simple bit of information. Thank you. I know it at least from you for this instance.
Jim Irion
I’m curious…
You’ve been so gracious to offer me the chance to have these published, as such. It’s very hard for autistic adults to get published about autism, because the focus is still predominantly youth. Not us.
Do you know how I may go about searching for or finding other publishers who do so on here? Medium. How do I search for them?
I appreciate you giving me these chances. It opens doors to what more can be done. Thank you. Not for the pending advice. For publishing my writing. Thank you.
Jim Irion
You’re welcome! I can’t help but support you! I’m so glad to be making a difference in your life.
I would suggest searching for articles about adulthood with autism and see where those articles get published.
Kevin the Nonmonetized
I’ll give it a try and respond back here. Have to take a moment to decide how many, which ones, and what order.
Thank you for being so patient, as well.
Jim Irion
As a late-diagnosed autistic, it's interesting to hear your perspective. The problem isn't so much that I didn't know I had to try harder but that I had to at all, because the world is made for neurotypical brains. It's the failure of many people to appreciate this that continues to frustrate me.
Jae L
5️⃣0️⃣M Paul Pintarich
I wouldn’t say that I having to “try harder”, in order to “catch up” as if it's a linear objective thing, because I was diagnosed later, tells the whole story. I would even say that part of why people like me get missed so much is because autism is so frequently seen as synonymous with being behind in every way possible.
At least for me, I see it as a splintered-inconsistent thing. There have been certain things that have come easier to me than most NTs. I taught myself to read at age 3. In middle school, I was more interested in doing calculus problems and practicing my instrument several hours a day, which allowed me to finish high school two years early, instead of succumbing to peer pressure and going to parties. Just yesterday at work, my boss was amazed that I was able to catch certain details in their vinyl quality control process that people far more experienced missed.
On the other hand, it took me until the age of about 20 to figure out that “How are you?” is an instance of phatic speech and not a literal question, I got made fun of for being the last one to tie my shoes at school, and have struggled for over 10 years to build the professional network I've always wanted. Growing up, adults, especially teachers, felt threatened when I knew more than them, or inadvertently challenged them to think about their subject area in ways they hadn't before, particularly because I saw no social hierarchy between me and them.
You're right, you can't compare people strictly on the basis of age of diagnosis. In theory, it would have been great for me to get diagnosed at 2 instead of 22, but I also know what I would have gotten in the way of support back in the late 90's might have been traumatizing in and of itself. Neither set of experiences is “a privilege”. There are too many variables involved to make this a cut and dry metric.
Noisy Skin Bag
Thank you, I didn’t consider that
Kevin the Nonmonetized
As late diagnosed I feel exhausted more than anything. The amount of energy it’s taken to make it this far has left me with little to move forward with. It takes a lot less for me to end up spending days or weeks in bed after a meltdown. My sadness comes from not learning earlier that I needed a lot more self care to prevent myself ending up in this position.
Chakalaka