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When there’s hundreds of comments you know it’s going to be a trashfire in the comment section. Still make me disappointed in people though, somehow.
So I’m someone who’s very involved with the autistic community in my country (at least used to, taking a break now, not sure when to come back). I’m just gonna pitch in and say that self-diagnosis is more of a symptom of a larger problem: which is lack of access to proper, official diagnoses. It’s not perfect, in fact it can be harmful. For example, I know someone online who thought they were autistic and through a doctor who specializes in autism, they turned out to have BPD. Now, imagine if a self-diagnosed autistic who actually has BPD doesn’t and/or can’t go through a proper ASD assessment (and to an extent isn’t aware of their BPD either, because as I said, lack of proper assessment), and they enter the autism community, manifesting their behavior in less than ideal ways, which does more harm and good. This is one possible, and perhaps damaging result of the emergence of self-diagnosis. But at the same time, the system doesn’t provide the assessment, and so self-diagnosis is the only pathway to understand what may be wrong with us. The thing we must collectively fight for is to make official diagnosis more accessible and affordible, the methods vary depending on the country, of course.
Full disclosure: I was officially diagnosed as a toddler. But I know many adults who resorted to self-diagnosis or get diagnosed remotely (by people who may or may not be qualified to do such assessment) because assessment for adults is difficult here. The local psychologists have not proven that they use the proper diagnostic tools to assess autistics in adults; a big hurdle is the lack of local translations.
From what I’ve seen, here are some of the arguments against self-diagnosing:
- Allistic people using autism as an excuse for their behaviors/difficulties, then denying the difficulties that actually autistic people experience and misrepresenting autistic people.
- Narcissistic and psychopathic people pretending to be autistic to manipulate others, including actually autistic people.
- Misdiagnosing themselves when their difficulties are actually related to other root causes, such as prolonged childhood abuse.
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 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.
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.
Who wrote this rubbish? Doctors aren’t willingly recommending abuse, and most of them refer to specialists.
Doctors aren’t willingly recommending abuse
Boomer doctors aren’t dead yet, and haven’t learned anything since the 70s.
But seriously, think about whatever industry you’re in. Surely there are the ‘old guys’ who haven’t kept up with the progress, but are still around kind of doing a poor job of things. Not all old people, surely, but a fair number. At least, that’s how it is in IT.
That still doesn’t mean they recommend “abuse.” Every doctor in the US must renew their medical license every few years and that means taking continuing medical education classes. Nobody is recommending therapy from the 70s anymore.
Also, it’s still vague about what this “abuse” is so it’s hard to debunk a vague accusation.
ABA therapy. That is the abuse being referred to.
ABA is abuse and very commonly recommended to autistic people (or more often, forced on autistic kids by parents).
