@actuallyautistic
As those of us who have been on here for a while know, this place is highly supportive of self-diagnosis. Generally it's because many of us, although certainly not all, are older, self-diagnosed ourselves, or have gone through the process of doing so before being officially diagnosed. We also tend to be acutely aware, often the hard way, that being officially diagnosed later in life brings with it very few actual benefits. There are few to no resources available to those who come to this as adults, especially adults who aren't also learning disabled in some way. Work place accommodations are difficult, if not again impossible to achieve. Even in countries where they are legally required. Or simply aren't something we need. Either because of the way we work, or because other diagnoses have already given us them. Many of us are also retired, or self-employed, in which case it's all somewhat moot. Add to this that we also tend to be well versed in all the arguments in favour of self-diagnosis and the validity of it. As well as all the reasons why it is so often the only way to go and it's no wonder that we accept it so readily.
But, it doesn't mean that it doesn't have a problem. There is one aspect of self-diagnosis that, despite all of this, we are especially vulnerable to. It's also the main reason, I believe anyway, why some people have a problem with self-diagnosis and its validity in the first place. And it's not because of the danger of getting it wrong. That's always a possibility, slim though it might be, even for those being officially diagnosed. Live as long as most of us have and you'll have been misdiagnosed by a doctor for something or other and if you are female-presenting, probably more times than you've had hot dinners. No, it's the simple fact that it's referred to as a diagnosis at all.
It implies, whether it means to, or not, that this is something that can only be certified within the medical framework, in just the same way as any other condition. That ultimately the only sure way of knowing and being sure, is for our assessment to be confirmed by an actual assessment conducted by those properly trained and qualified to do so. That, just as a self-diagnosis for any other condition or illness may well be right, that only a proper expert can really tell whether it is, or not.
Now, before someone gets on their high horse, I'm not talking about the diagnosis of any aspect, or consequence of our autism, that does or could very well require intervention of some sort. That obviously requires a level of knowledge that most of us don't have and the experience, that most of us probably don't have either, of being able to work out what is the best intervention and help that could be required. No, I am talking purely about the awareness and recognition of ourselves that we achieve from self-diagnosing. The realisation that we have been autistic all our lives. The knowledge that we are no-longer alone, or, possibly, as broken, as we always thought we were. It is a level of knowledge and conclusion that can only be reached by us. Either through a self, or even an official diagnosis. It is a process of recognising ourselves, of seeing ourselves finally, within the correct framework and by the right light. And it's why I prefer the term self-realising, rather than self-diagnosing. Because, ultimately, to me anyway, it is far more reflective of what is actually going on and, of course, eliminates the baggage of using the word, diagnosis and all that it brings.
Unfortunately, though, it is baggage that will still remain, to others anyway. Tell a family member, or friend, that you've realised that you are autistic and they'll still view it as a self-diagnosis, with all the reservations therein. Add in the pretty much medieval awareness that most people, especially over a certain age, have about autism and the natural tendency of wishing you the best and not wanting you to think of yourself as such a dark and terrible thing. Or the nastier tendency of not wanting to be associated with it in any way and then just watch the denials flow. It's one of the reasons why those of us who are older, have such a problem convincing, or even talking with our friends and family about this. And why so often it isn't believed until we do get an official diagnosis, if indeed even then. Most people don't want their loved ones to set themselves apart, especially in ways that they see in such a negative light. Feeling that they have to accept it, simply on that person's word, is simply too hard for many and comes, if it's self-diagnosis, with the handy defence that they can always use and believe, that it's not official and therefore not real. That it's not a proper diagnosis.
[#]Autism
[#]ActuallyAutistic
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@pathfinder @actuallyautistic
And it's why I prefer the term self-realising, rather than self-diagnosing.
This is such a valuable and loving conclusion. It's a journey vs an appointment, understanding vs cold statement, self-acceptance vs talking about it.
Everybody should print this out in XXL font and stick it above your bed.
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@KoosPol @actuallyautistic
Thank you. It's most definitely a journey and in many ways an ongoing one. We're not finally able to accept this lightly or without a struggle. It is the rendering of our hearts and the rebuilding of them into something so much stronger.
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@pathfinder @actuallyautistic I am so grateful I know you Kevin! What a blessing of a human you are π I really enjoyed reading this.
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@DrSafariBoob @actuallyautistic
πβ₯οΈ
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@pathfinder @actuallyautistic I know from bitter experience that even if you manage to get a diagnosis in the latter years of your existence and even though your quite correct assumptions and self-realised image you lived your life by are confirmed by a medical professional, it doesn't make acceptance of the fact any easier for some people.
That's their problem, not the problem of the autistic individual. Their blinkered world view cannot comprehend an autistic person getting through life for so long without being picked up. They can't accept a late identified autistic having a career, a spouse, a home as possible.
officially diagnosed or self-identified you're valid as you are. The only person you need to validate yourself to is yourself and even then you can refine or redefine your self image until it fits you.
Autism isn't an off the shelf product. it's a haute couture custom tailored fit that only the autistic individual can describe.
in latter years I've come to realise that I probably veer towards the ADD/ADHD side of autism but I see no point in going for another "official" diagnosis. I didn't get any help with my ASD one and as I don't want to medicate an ADHD diagnosis wouldn't help me any more than my ASD one did.
And I'm fine with that. I know me. If someone can't accept my self image then that's on them, not me.
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@PeteLittle @actuallyautistic
Indeed! We're the only ones who can truly know, that we've finally found the missing heart of us, the thing that answers so much more than it doesn't. π
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@PeteLittle @pathfinder @actuallyautistic
βAutism isn't an off the shelf product. it's a haute couture custom tailored fit that only the autistic individual can describe.β
oooh, I love that description!
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@nellie_m @pathfinder @actuallyautistic thank you :)
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@pathfinder @actuallyautistic
I use recognized, or self-recognized for the same reasons.
There are far too many people who can't even believe a dangerous medical diagnosis isn't real if it wasn't diagnosed at birth. Even if no, or almost no, doctors knew it existed when the person was born.
Sadly, many of those people tend to disappear. Eventually, their health will decline, and they will understand, even though it won't help all of those whom they hurt.
I am glad to have this community. We are all at different realization stages, and can learn so much from each other. While being ourselves. With the mask lowered, if not fully off.
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@UnCoveredMyths @actuallyautistic
It's unfortunate that, in so many ways, these are the only sorts of places where we can learn.
For all the crap about autism increasing and being on the rise. The reality is that the hidden mass of late-realising adults can only increase as their ability to finally see themselves becomes more available. And yet any sort of provision or resources for them doesn't.
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@pathfinder @actuallyautistic I really need to send virtual hugs when you write this pieces.
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@Cattz @actuallyautistic
π :bear_hugs:
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@pathfinder @actuallyautistic
In the UK you may not need a formal diagnosis to get accommodations, just evidence of impact which is long term. This could come from people who know or have observed you, an HR/occy health discussion or screening and "if shoe fits, wear it" approach given that a lot of accommodations cost very little for huge impact.
Of course NotAllEmployers, but tbh you can have diagnostic proof to excess (guilty as charged) of disability stuff and BadEmployers will still suck
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@NatalyaD @actuallyautistic
This is the problem. Even if accommodations are in principle available. Principle and practice aren't always the same thing and all too often the ability to enforce it is either mired in torturous legal hoops and hurdles, with no guarantees or too easy for employers to evade.
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@pathfinder @actuallyautistic
Yuuup!
It's a culture change that is needed as much as a legal one.
Good managers or employers will pretty much be good regardless. Bad ones, sadly, similarly and will bully and gaslight and bullshit folk all "within the rules". Which I know from suing 3 employers (1 while staying working for them which really sucked).
I'm wise to the games now, some I let them play on legal advice. Some I call out as the disablist bullshit it is, courts be damned.
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@NatalyaD @actuallyautistic
The sort of experience that it shouldn't be necessary to gain, but all too often is. Until, as you say, there is a significant attitude adjustment.
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@pathfinder @actuallyautistic
Yep.
I did at least give all 3 a suitable kicking. One caved instantly and didn't bullshit me.
The other two discovered I'm INCREDIBLY stubborn and I don't react very well to bullying bullshit. I was messed up after the first, but I did recover and I came back 10x as mean as before.
I also cofounded a tiny charity with 2 disabled friends <www.reasonableaccess.org.uk> and we help others stand up for their disability rights on a range of levels.
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@NatalyaD @actuallyautistic
I'm glad you were able to do this and congrats for going on to help others π
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