this post was submitted on 05 Sep 2023
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From what I've seen, here are some of the arguments against self-diagnosing:
In the first two arguments, the problem with self-diagnosing is the social impact it has on others, including the autistic community. I can see why some people are against self-diagnosing since it could make their lives harder, especially autistic people. The last one is more about helping the individual properly understand them-self and developing a proper course of action to improve their lives, so it's an argument rooted in care.
I am not entirely against self-diagnosis. However, I think it could be re-phrased to "self-identified" since "diagnosis" is a medical term. It would be like a person saying, "I'm self-diagnosed with depression." That person isn't diagnosed with depression, though they very well may be depressed. It's really just a pedantic issue from my perspective. Regardless, I don't really care one way or the other because I understand what they are saying and think that an actually autistic person self-identifying as autistic is valid enough. Still, while I wont invalidate someone for self-identifying by gatekeeping autism, I tend to be a little cautious at first because of my experiences with people pretending to be autistic. In this case, I think the issue is that some jerks just can't let us have nice things.
I can see your point here, but what is to stop somebody from begaving that way and just claiming to have an official diagnosis, rather than a self diagnosis to begin with? There's always going to be people who behave in bad faith in any group, People who are going to lie and manipulate are just going to do that. There's no way to avoid that, that doesn't result in alienating people with systemic barriers to diagnosis. With what we know about the bias in diagnosis to begin with as well as all the other reasons people have pointed out. I think rejecting self diagnosis as a valid means of finding support, and community is going to harm more people than keep out bad faith actors.
I think that the biggest issue is that in many places (the UK is a personal example), the services are so utterly over stretched and overflowing capacity that there is literal years long waiting lists in some parts of the country.
In York area, unless you become a priority case due to being a risk of self/other harm then they have a waiting list of over 4000 people, with the capacity to only process 160ish per year. I'll let you figure out that maths by yourself. It's fucking hopeless. So with an official diagnosis effectively impossible to self 'diagnose' is your only option and you have to hope that the people around you are supportive enough to trust you and help regardless.
Not to mention the difficulty in even getting a referral to an assessment for the diagnosis. The steps in place are practically brick walls to us with the requirements needed to fulfill. You need to get an appointment with your GP (good luck since it's not an emergency), then you need to hope they have some understanding/experience enough to identify if you would be suitable for a referral, then you need to convince them you need a referral, then you have to wait for the specialist to pick you up and be put on the wait list, blah blah blah.
Why go through all that energy when you can just 'diagnose' yourself and carry on with struggling the way you always have. After all, as long as you keep your routine it'll be fine...right?
Except it fucking isn't, but what other choice is there?
Ah, that makes sense why people feel so strongly about advocating for self-diagnosis. It also makes sense why some people are really concerned that they weren't autistic enough at their assessments because re-evaluation could be near impossible. That's such a disservice to the autistic community. What do they expect people to do while they wait for assessment? It's not like people are doing great and think, "Maybe all my success is because I'm autistic." If this comes up, there are probably some considerable difficulties going on for someone to consider they're autistic. I was not aware of that and sorry you're in that situation. Thank you for sharing.
If you have the energy to endure the process, it might still be a good idea to get on the wait-list. Three years are going to go by whether you're on it or not. However, I could see being pretty distraught should the GP be invalidating by denying a referral and potentially having that in your national medical record. Another idea would be to maybe find a way to save up little by little to see a private provider, even if it takes a few years.
BTW, I want to be clear that I'm thinking of ways you could get assessed only because the diagnosis was very helpful for me to make sense of things and access proper autism services.
I'm currently not sure how I feel about a proper official diagnosis at this stage. With the stigma around mental health illnesses 8 worry it'll just be used against me. My journey with this is still very young (read: days) so a lot of stuff I'm finding out quite fresh and this particular nugget of info was as soon as this very morning.
There are other routes you can go through such as charities, the main one being 'Right to Choose' who support you with how to approach your GP, templates for letters, what to say to the various people you need to speak to and such. They also act as a tool for you to find support groups, specialists etc etc.
Sounds amazing, right? Hell yeah. Except they're so utterly overflowing they've been closed to new referrals/applicants since the end of August.
2 weeks too late. Honestly, man. You can't make this stuff up.
That sounds incredibly frustrating. Feel free to reach out to the community if you want! There is a hunch of helpful people on here, and we even have a chat going that you can reach via the sidebar.
For the first two things, there's always going to be manipulative assholes that grasp onto anything they think will garnish sympathy. Rather than targeting otherwise innocent behaviour that goes along with manipulation, we should be educating people about what manipulation is and how to avoid it.
For mental health issues, it comes down to, your mental condition might explain your behaviour but it doesn't excuse it. If your behaviour is causing me harm, I don't need to accept that for any reason. All a diagnosis does is provides you with more information about how to manage your shit.
If someone uses a diagnosis to justify their behaviour, they are essentially saying that this is the way they will always be, which IMO is even more reason for others to take their own steps to mitigate those behaviours, which might mean cutting them out emotionally, cutting them out entirely, or getting help from others to do those.
Don't set yourself on fire to keep others warm and stop letting them manipulate you.
The term "identified" is used as an insult, particularly when referring to transgender people, to imply that they aren't really correct. I don't think it's appropriate to use that in the context of autism, because many of the people who do believe themselves to be autistic do go on to get professionally diagnosed. I became interested about 20 years ago in the possibility that I may be autistic, as I met all of the criteria, but only recently did I actually get the resources to pay for a diagnosis. It cost me nearly $3500.
The problem is that self-diagnosis IS valid, when it is valid, and is not valid, when it is not valid.
I haven't heard that before. Is the current progressive trend to avoid using the term "identify" entirely? If so, let's say I was completing an interview, and I needed to ask someone what ethnicity(ies) they identify with, how would I ask that?
It varies in practice. Most people I see using identify, including many trans people, are well-intentioned and think it's the preferred polite language without thinking too hard on the implications of it.
However there are definitely anti-trans people who will use it pejoratively, which I presume is where that wording originated.
If it's a minority (of people) using it that way they I don't think they can claim it.
"What is your ethnicity?"
"Hispanic"
I've never once heard of it used like this. Could you provide an example please? I'm not sure I understand.
Bigots commonly insist that trans people use "I identify as" rather than "I am" when the transgender people are giving their gender, because the intention is to deny those people the ability to be seen as their preferred gender and instead give the impression that those people are impostors, implying that "identifying" is more akin to "relating" instead of categorization.
Insisting that an ostensibly autistic person use "self-identified" instead of "self-diagnosed" would have the same effect.
If you want to use a proper word that's not "diagnosed", "self-assessed" would be more accurate.
Thank you for sharing your perspective. Does the distinction between "identify" and "self-identify" make a difference to you?
I don't know about the other people involved in this discussion, as I know that obsessive interests are part of different communities, but I am someone who studies languages and word meanings.
The information that I am sharing is not my perspective. Those words do have that context in common spoken English in the year 2023.
That would not have been the case many decades ago, but the word "identify" tends to be used ironically and sarcastically and with derision. It doesn't matter if the word is used by itself or paired with the word "self".
I'll point out the definitions on Urban Dictionary, to point this out(and not just on the first page, but on pages beyond that):
https://www.urbandictionary.com/define.php?term=identify
Insisting that people who have not been professionally diagnosed use "self-identified" will lead to even more bullying and social abuse from neurotypical people who already use that context when trying to justify their bullying and social abuse.
"Self-assessed" would be a phrase which is more exact and does not have that additional context of being tied to groups that have been targeted for bullying and social abuse.
Most of us here don't seem to hear it that way so I don't think it's so cut and dry. I know, you study word meanings, but I'm a descriptivist, and if enough people take a certain meaning from it then that's what it means to me.
The issue is not what meaning we(those of us who are autistic) take from it. The issue is that the people who will bully will use it as further justification to bully and to socially abuse people.
Maybe this is region dependant? Or maybe a thing in online spaces? Because in my experience, in real life interactions, for example, I've heard case workers refer to an individual as someone who identifies with a disability rather than saying a disabled person. And this is a more recent change and I actually appreciated as instead of saying something about the person it makes it about what they feel and gives them power and autonomy.
I understand and sympathize with how it can be weaponized against trans people but that's not the universal experience and not the connotation I get from it. Agree to disagree, and I will consider your point of view in the future when using the term. Thank you.
Also, I'm not diagnosed autistic, but I'm pretty sure I've self-something'd it