Different phases we go through after a late diagnosis

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Autistic1
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10 Feb 2025, 3:53 pm

About age 11, back in 1970, I was diagnosed with what is now ADHD, dyslexia and minimal brain damage. Without services, I just did what I could to cope and survive. I denied, avoided, and ignored and buried the stress and pain so deep I could recognize it any more. It all fell apart about 7 years ago when I looked deeply into Asperger Syndrome. There I saw everything in my life I had been trying to run and hide from. It was a crisis, but a relief from the running. It took about 4 years to do all the soul searching and research, self-education etc, to try and understand Autism but less so the ADHD and dyslexia. I was fairly comfortable where I was until about 6 or so months ago when I had a communication / social problem at work that threatened my job. I did get a job coach.. who has been support and help. But this has thrown me back into something I did not have to deal with after my diagnosis. Feeling all those feelings I had back in school of being "on the wrong planet" . Now I'm having to deal with it now and at age 66 it is a strange place to be. Feeling its the world against me.. I'm the broken one again. Its also put a stress on me that is either making my traits worse or my awareness of them increase. Its hard to go back to that time in my life I've said I'd never want to go back to. I know " This too shall pass" and I may be the better for going through it. But it still sucks! I'm just sort of reaching out to you all who know what I'm talking about. Its good just to know I'm NOT the only one on this planet.



ChicagoLiz
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11 Feb 2025, 8:25 pm

You are not the only one on the planet, nor are you the only 'old' one!


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peterd
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24 Feb 2025, 6:37 am

Retirement was a relief, no more struggling with work places and their people. There’s never going to be a place where autistics of my generation feel at home with “ normal” people.



BTDT
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24 Feb 2025, 11:00 am

I think it is good that they gave you a job coach to help you figure it out.

In the US, if you have a stroke or some other catastrophic illness insurance limits the about of therapy you can get before they stop paying for assistance. After that you are pretty much on your own. So a lot of folks don't get better after six months because they have nobody helping them get better.



ASPartOfMe
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28 Feb 2025, 7:12 pm

A belated welcome to Wrong Planet. Very late diagnosis often stirs a lot of emotions. Why would it not? Having to redo or re-experience something you thought you were done with is very hard. You are finding out many things you assumed about yourself all these decades are not true. Tough to handle.

Since you have been operating under some false assumptions for so long, figuring things out is going to take some time. This can be frustrating, especially since an autistic trait is needing certainty. You need to let your autistic brain do what it needs to do. Sometimes, this will involve some setbacks. It's all part of the process.

Good luck


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PhD_autistic_adults
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Yesterday, 12:18 pm

You're not alone at all! This is a very common experience after being diagnosed later in life. Many late-diagnosed adults experience multiple emotions including denial, sense of loss, relief but also feeling like they finally understand themselves. There are lots of research papers on this topic too! Interviewing late-diagnosed autistic adults.

We covered this topic in our most recent publication about quality of life as it was a topic that came up in our interviews with autistic adults. There are other papers that focus entirely on this topic. I hope that this helps you realise that you are not alone!

If you are interested you can read our paper for free here: https://www.nature.com/articles/s44271-024-00142-0


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Stargazer99
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Yesterday, 1:39 pm

{redacted}



Last edited by Cornflake on 02 Apr 2025, 3:54 pm, edited 1 time in total.: Removed a personal attack

ChicagoLiz
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Yesterday, 2:28 pm

Why that response? It was a legit paper and a legit URL.


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PhD_autistic_adults
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Yesterday, 2:43 pm

I think it is because I am a non-autistic researcher. This forum member has replied to my other post saying autism research should only be carried out by autistic people. I understand and respect this perspective, especially given the history of autism research.

I will leave my previous response here for now but if the OP also doesn't find it helpful I am happy to remove it. You'll have to explain how to do that mind you, as I don't quite know how the forum settings work yet!



envirozentinel
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Yesterday, 3:04 pm

You're welcome to contact me or Cornflake should you need assistance with such.

Thank you for your well mannered and level headed response to a poster who disagrees with all aspects of NT based research. I'm sure she has had negative experiences which has caused her to respond angrily.


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