Late diagnosis and 'The Label'

I agree the we all need to do what works for us as individuals. We all have different backgrounds and would have differing levels of acceptance.

• I'm out as autistic big time amongst family
• My NT friends just know, but it's never really mentioned
• I have the gold infinity sign on my Facebook, but never mention anything about it
• I probably won't bring it up at all in work situations and medical situations
• I'm full blown autistic here, and in my local autistic group.

Hey, we could say that coming out is like a spectrum, with a spikey profile! (kidding, but it's kind of true)

i can really relate to your reply. Many thanks for sharing x

i totally know what you mean about th e label which is partly why i never told anyone but an autistic friend suggested i should "come out" as he found it useful but its not me...  I feel odd enough as it is without having an actual name for people to stick on me.  I get "what is wrong with you" or "your different" or "youre uumm, odd"  from people but i just let them wonder. So each to their own i think. I feel it draws attention to me with the lable which is something i definitely want to avoid. Be who you want to be. xx

I was always told I was wrong, I did everything badly and why couldn't I be normal, I've been told that I don't understand anything. Everything in my life has been used as a stick to beat me with. I don't think like you, I decided to not allow myself to be beaten anymore and that it was OK to be different, I even used it to my own and other peoples advantage. Being different, what I now know as autistic, made me a good counsellor because I was looking at things as an outsider, I had insights that others didn't, these insights helped others and myself.

I'm opinionated and vocal and will challenge the accepted wisdom, I refuse to be put into pigeonholes, either religious or political, I'm me sometimes defiantly so, I'm fineally able to stand in my own light and be strong in it. Some people still think I'm mad, bad and dangerous to know, I think the same things about them. I don't see any conspiracies from any political parties, I see some people being daft, for the most part I ignore them, although sometimes I do have to translate my thoughts and feelings into daft to satisfy the DWP or someone. If having to live a a daft person is the only option on offer, I walk away.

The label doesn't define you, it's useful to the degree that it can help you find support or understanding, and knowing that it's not because you are broken, but because you are different in a world that wasn't designed for and doesn't accommodate neurodiversity.  Most neurotypical people can't understand what it costs both mentally and physically to function in the world. The menopause is also challenging and doesn't help with the emotional load. I was diagnosed at 31 and am now nearly 45, for me a label explained why everyone thinks I'm really weird and why I feel like I was born in the wrong place, why trying to work, have a family, and a house takes every inch of strength and energy I posses, that I wasn't going mad and there was a reason; beyond that it's no use at all, it doesn't achieve anything else. I don't tell people about the label, I just try to be myself (as difficult as that is and  doesn't really work, I can only show small bits and end up trying to be what the other person wants or needs), and do things in a way that helps me to function as best I can. I try to accept that I'm not superwoman even though I'd like to be. I'm currently working on the issue I have of trying to personally solve everyone's problems so they can be happy. I hope that makes sense, sorry one of our pets died recently and one of my children is really mentally unwell, therefore not as eloquent as I'd like. Burnout is not an excuse for meltdowns, it's a cause, being overloaded will inevitably cause a meltdown, and burnout results from being seriously overloaded. I am so happy for you that your parents accepted you for who you are, that is truly special. . Oh and I've found that "your best is good enough" is a really helpful thing to try and internalise, as well as confidence in who you are, and being kind to ourselves, especially when things are tough.

When you constantly get told that you are wrong and get told that you are wrong because you are deemed to not  understand that you are wrong because other people constantly say so, then you will think differently about this 

Thank you for your thoughtful response and story. It sounds like you've had a lot of challenges, and that a diagnosis has been beneficial. I'm still trying to figure out how it might benefit me. I now have a possible reason for at least some of my recent troubles - anxiety, depression, and mood swings in conjunction with menopause (an evil little life stage). I guess I just need to keep reading, and asking questions until I'm settled.

I wish you contentment. 

First of all, my respect for your years of teaching, in what I assume to be late primary and secondary schools. I too am a teacher but in EFL and EAP. I deliberately chose to teach adults many years ago because I knew I couldn't deal effectively with children and teens. Adults, after all, choose to be in my classroom, right? However, this past spring one of my adult students called me useless, the first time I've heard this in over 30 years of teaching here and abroad. Despite the support I got, and an essential grasp of why this was said at the time (disappointment at feedback, for starters), it was devastating. I dealt with it (and another unexpected bullying incident), badly and am considering a late career change to... ? I can't retire yet. Years of qualifications and experience out the window but my inability to cope is what led me down this autism diagnosis path.

I agree that knowledge is power, and I decided to pursue diagnosis knowing that. I also knew that I would struggle with the label. I just need to figure out what to do with it. Thanks for your considered reply. 

Not everything is about lefties and religion, in my humble opinion. I think 'autistic' is as real and valid an identification as Irish, or Catholic, or Gay.

In addition to this, I also think that a label or diagnosis of autism is a tool used by those who follow leftist propaganda and ideologies to silence and shut down those who are deemed to be too difficult, opinionated, vocal and who will not accept the accepted version of what is deemed by leftists as reality or the accepted wisdom, defining any or all behaviours of that person as being not grounded in reality and/or in thier “infinite wisdom” as being realistic or based on “common sense” (in their opinion) as leftists always seek to hold people back and hold people down, put people in boxes 

Congratulations on your diagnosis. I wasn't diagnosed until I was 60. On the whole, I think it's far better to know than to not know. Knowledge is after all, a form of power and if one knows why they are the way they are, they can better plan for the future.

However, it now feels like I've got a big fat label stuck to my forehead. It oversimplifies the complex creature I feel myself to be - good, bad and indifferent combined.

People tend to think by categories i.e rich/poor, clean/dirty, convservative/liberal etc.This is a way to sort and classify information. 

You're right that the autistic label seems overly simplified. There is simply no way to convey the entire meaning of what it is to be autistic within the contraints of a single word.

While the traditional view is that autism is a spectrum disorder that spans the range from mild to severe, I've found that autism is more like the layers of an onion with varying degrees of strengths and weaknesses over multiple areas such as exectuve functioning, sensory issues, obsessive compulsive disorder, anxiety etc. 

I now realize that I am suffering from autism burnout

Yep, me too. I ended a 32 year long teaching career because I just couldn't do it any more. It wasn't just a matter of masking but it was also my badly frayed tolerance for bad student behavior, along with their insensitivity, entitlement, selfishness, and basic lack of respect for others. Add in rudness, lies, and bullying coupled with parental denials i.e. My (son or daughter) would NEVER do that. (sigh)

I am now retired. 

It took me around 18 years from suspecting there was more going on than just SMI to getting an Asperger's/ASD diagnosis. It wouldn't have happened if I hadn't moved to be near my daughter. I'd like to say I'm doing better now because of the diagnosis, but there's a more realistic reason why that is so.

My daughter who did all the heavy lifting in getting me from Essex to Wiltshire spoke with the mental health team here in Wiltshire prior to my moving from Essex. She kicked into the long grass a lot  of untruths  that had been allowed to become entrenched about me as a person. That more than the late diagnosis is why the relationship between the mental health team and me over the last 7 years is immeasurably better than it was for the 40+ years under past mental health teams.

Am I now doing wonderful things because of  being treated better? The simple answer is no. Too much damage was done for too long that can't be reversed. I have to make the best of how things are, rather than how they could and should have been. I'm helped more than words can say by my chosen family who love me every bit as much as I love them. I still have the bullying related trauma and the severe social anxiety that goes with it, but the schizoaffective/schizophrenia symptoms are much less.

Congratulations on getting the diagnosis! Everyone experiences that differently, there is also article about post diagnosis on this site and other sources. I’m not diagnosed (yet, maybe) but once I heard one psychiatrist saying: personality always comes first, then there is a diagnosis. Everyone is unique regardless of their diagnosis. Maybe this would help you - personality first! You are unique and you don’t have to always explain all your traits and behaviors. You also don’t have to share this news with everyone, it’s totally up to you. Maybe you feel like you’ve got the label on your forehead, but in reality you are still the same person as you always were. I don’t know how I will deal post diagnosis, if I ever get it. If I do - I will share it and my feelings here on this site. 

I felt an overwhelming sense of relief when I was diagnosed aged 50, which was 12 years ago now. I dont' feel it's stopped me being me, if anything the opposite, I feel freer to be me and if anyone objects to tell them to go and do things with lots of F's and B's. As I've got older I've become much less tollerant of intollerance and that includes people making judgements about me and how I can, should and ought to behave, I do not have to justify myself to others, I do not have to believe them when they try and "kindly" tell me how to be or what to believe, or behave. Especially behave, behave is such an emotionally freighted word, right from early childhood we're told to "behave", probably quite rightly so when we're small, but as adults we can choose how to behave as long as we're adult enough to accept the consequences. This course of action has lost me some friends, but then I ask myself how real were those friendships, if I couldn't really be me?

Remember like everyone else, whatever they're neurologial status you're fine

F***ed up

Insecure

Neurotic

(and) Egostistical

I'm your age and was only diagnosed several months ago. I am embracing "I am autistic" which is identity first language. It's worth reading about. I'm not knocking people who prefer to say I have autism. I'm just really saying that I have jumped in rather than dipped my toe and am seeing that phrase as a positive statement.

Congratulations on your diagnosis and welcome to the community!

The NAS has some great resources for those of us who've recently been diagnosed, which you might find helpful. They include:

• How will I feel after receiving an autism diagnosis
• Talking about and disclosing your autism
• Emotional support for family members after a diagnosis
• Formal support following diagnosis

NAS - After diagnosis

There's also some good info and advice here about fatigue, which you might also find interesting:

NAS - Autistic fatigue and burnout

As a 54 years old Irish gay man in the U.K. 23 years, diagnosed in 2021 later in life, 30 years in supermarket retailing, from an only child background, very strictly raised a traditional Catholic in Rural Ireland, coming out as gay in my teens, I do empathise because I’ve had the same kind of judgemental attitudes from those in my home village in Ireland and also from other gay men in the gay community and on the gay scene in both Dublin where I’d lived for 3 years and here in Manchester - my childhood had a lot of bullying and being punished for being bullied and the same happened in the supermarkets