Recently Diagnosed/ Shame/ Guilt PANIC :( help.

I have recently been diagnosed with Autism Spectrum Disorder.

I'm 25, so it was a bit of a shock to find this out so late, it's something that i have considered now for a few years, but as I have my friends and interests and was getting by I didn't feel it was important.

Until things seemed to get harder and harder, and I just felt more and more alienated and lonely and mainly a lack of understanding/misunderstanding, towards the way people behave. I'm quite a sensitive person and this is something that has got in the way of loads of things

I hate being so negative but I feel ashamed of it, ' autism ' and I am worried that my friends and family and the world, in general, will view me differently ( although I've chosen to keep it to myself mainly, I don't know if this is the best approach feeling the level of shame and anxiety I do.

At the moment I'm in denial and I just wish I could wish it away, but in the same breath I don't because I feel it makes me who I am too, I love art and music and poetry and view the world in a very artistic and abstract way due to these wonderful interests that im fortunate to have.

I want to feel like I can talk to people without panicking ( because I LOVE people ) and I have always accepted them for their differences and loved them for it, so it's hard with having a past of being called 'weird ' and ' a bit odd ' to have faith in humanity currently!

Can anybody offer me any advice?

  • From Me... I am adding support to exactly as everyone else has said (positive) so far. An Autism diagnosis is not easy to gain, and so You are lucky to have gained one. And Yes, You need not tell it to anyone, yet it gains access to a lot of specialist support in LAW.

    ...So, keep on using Your own good judgement, and those who truly support You will continue to support You... In case You have a meltdown or shutdown or unexplained-reactions or "coping mechanisms", or any scary thing that might happen... and state Autism as the reason for it happening against wanting to state having Autism. Autism is a Shield yet can also be wielded like a Sword in LAW and in SKILLS.

    ...No-One upon this Forum has any idea of how just weird/odd I Myself *really* am... and do not put faith into *all* of "humanity" - put faith into People who *Prove* Themselves to be worthy of Good Faith...  (That is what I say.) Keep expectations real & within One's own experience. & Good Luck!

  • You are still the you you were before getting the diagnosis. You are lots of things, over and above what the A word may have to say about you. It doesn't have to the the ultimate thing that defines you. They might be calling it something totally different in another thirty years!

    All that is easily said than done though, when the thing came up for me in the 90's it really did reopen a lot of old wounds. Then later on, a therapist I saw told me that it would never have hurt me so much if there wasn't any truth to it. I think understanding of autism has evolved a lot since the 90's. At that time the literature keot banging on about empathy. 

    I think you should just use the diagnosis as s tool to undetstand yourself where it is needed.

  • Heya :) I think it's important to say that while you've got a diagnosis, that doesn't fundamentally change who you are. You're the same person as you were before and after the diagnosis - there's a difference between being 'autistic' and being a person with autism. You don't necessarily have to tell anyone if you don't want to (although I'd tell an employer if they have reasonable adjustments), and no one will know any different unless you tell them your diagnosis. If you do decide to tell them, the ones that really care about you will support you as best they can, but don't expect everyone to understand straight away - many people don't really understand it as they've not had exposure to it before. Stay strong, we're here with youx

  • Being autistic doesn't mean you are less than. If it helps, think of it as a different operating system. Like iOS and android. They both do the same stuff, just differently. one is better at some things, the other is better at other things. Maybe it's not the best example... 

    You're still the same person you were before you were diagnosed. Just be the best you you can be and dont pay attention to any negativity. Peoples opinions about you are not facts. :)

  • Welcome to the forum. It is a common experience to go through a range of emotions about a possible or actual diagnosis. It is part of processing this new reality.

    Of course there is absolutely no need to feel ashamed and there is nothing shameful about autism. But it is absolutely important to validate and recognise your emotions.

    For most people the diagnosis is the beginning of re conceptualising there life and pushing back ableist conceptions about disabilities. 

    Take a look at the "Relief, grief and belief" video on this page as it really explored all the emotions after the diagnosis. https://ndsa.uk/content/just-diagnosed-now-what/

  • Hello and welcome to the forum! I have been diagnosed with Level 2 ASD. Feel free to ask any questions and read my profile.

    You have absolutely no reason to be ashamed.

    Before I was diagnosed, I had suspected that I had some sort of underlying condition. That's why when I was diagnosed last year, it didn't come as a surprise.

    It's up to you whether or not you wish to disclose it. Generally, I only disclose it when I apply for jobs.

    Remember, all you have is a condition that makes you see the world differently to others.

  • I have yet to get a diagnosis, but I definitely felt a certain panic when it was suggested to me by the psychologist I was seeing for mental health issues I was having. This has gone down some what in the last 6 months or so as it all started to make sense, and I'm now on the waiting list for assessment. I'm sorry that it's making you feel shame and guilt - I hope in time you will come to see that it is just another facet of who you are,  just as liking music and poetry, regardless of what people will think. That is easier said than done though!  

    One thing that I have found really helpful was/is watching youtubers/ vlogs of people on the spectrum, and them talking about their lived experiences. My favourites are Yo Samdy Sam, and Purple Ella but there are loads out there! It could give you the language and the confidence to talk about autism to other people without it being too big a deal?

    Good luck, and you can always come here and find people who will say - "that's not weird, that's me'.