this post was submitted on 08 Nov 2023
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My doctor ordered me a pack of forms and questionnaires to request an assessment for adult autism. In amongst the medical histories and self assessments, this question stuck out;

it is important to know that not everyone who is referred to our service will have a diagnosis of autism confirmed. In the space below, tell us how you think having an autism diagnosis confirmed, or not, might impact on you and your life

What's going on here? Do you get asked this for other conditions? We're a community that typically struggles to read between the lines, so I could be way off, but this feels grudging to me. It's a question that says - what's the point of us even offering this service, and why are you so special that we should waste our time on you?

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[–] winterayars@sh.itjust.works 36 points 1 year ago (2 children)

This might be a "hey if you think getting an actual diagnosis is going to cause problems let us know so we don't do that".

[–] octoperson@sh.itjust.works 25 points 1 year ago (1 children)

Ooh good thought. Like employment / legal / child custody type problems. That would make me a lot happier with the question (and mad that it's necessary)

[–] Globeparasite@lemmy.world 4 points 1 year ago

Could also have the other side of the problem. Some people can expect a diagnosis to completely solve everything in their lives. People may have unrealistic expectation towards their diagnosis. In that case it could also help the doctor calm down those expectation before giving the diagnosis in order to not hurt them too much.

[–] Neato@kbin.social 10 points 1 year ago

Yeah, this is that. A diagnosis can mess up some people's lives.

[–] Lhianna@feddit.de 24 points 1 year ago

It might be a question of priority, like do you need an official diagnosis to get accommodations at school/work or do you "just" want to know for sure.

Also, it'll make you think about why you're requesting the assessment and in what way it'll change your life. Like, in my case having an official diagnosis wouldn't change anything, therapy options are designed to make a person useful for the workforce, I am a housewife so it wouldn't help me much. So I'd rather have them use their service for people who actually have a need for their service.

[–] technologicalcaveman@kbin.social 24 points 1 year ago (1 children)

The way my doctor put it is basically, I most likely will never need to be under care for it. So, he was not going to put it on paper unless I wanted it. He said I am autistic and I am diagnosed, just not on paper. So, do you think you'll ever need special care for it? If yes, then maybe consider getting it on paper.

[–] chuckleslord@lemmy.world 18 points 1 year ago

And it can be something used to discriminate against you. So, there is value in asking why you're looking for an official diagnosis

[–] LazaroFilm@lemmy.world 23 points 1 year ago (2 children)

Have you considered this might be part of the test?

[–] octoperson@sh.itjust.works 13 points 1 year ago

Now you mention it, it's from a Dr Kobayashi Maru

( /j, just in case. Do we do that here?)

[–] BackOnMyBS@lemmy.world 2 points 1 year ago (1 children)

If OP attaches a separate paper that had an introduction, numbered points, thorough explanations for each point with referenced sources, and a conclusion that summarizes it all up, they'll skip the assessment and give a diagnosis on the spot. In fact, I'm almost certain they get those fairly often. 😆

[–] octoperson@sh.itjust.works 3 points 1 year ago (1 children)

Was I planning to post a question from an assessment questionnaire as a daily discussion topic? Definitely not! No sir, not me. I would never.

(Srsly tho, let me know if this is an awful idea, before I flood your sub with it)

[–] BackOnMyBS@lemmy.world 1 points 1 year ago (1 children)

It doesn't seem like it violates the rules, so why not? Maybe some people will find it interesting.

[–] prettybunnys@sh.itjust.works 19 points 1 year ago (2 children)

I was told “at this point you’ve spent your life learning coping mechanisms and behaviors to get you this far, you’re doing pretty ok … what purpose does this label serve” and kinda went with it but have felt weird about it since.

But thinking about it …. The actual “formal” label / diagnosis might have hindered my life more than being able to describe it “accurately” would have helped.

Idk.

[–] Szymon@lemmy.ca 11 points 1 year ago

I keep my neurodivergent diagnosis to myself and share only when medically necessary.

It's a shame, but there's an instant stigma as people assume they know your problems and your limitations by your label.

[–] Bluefruit@lemmy.world 7 points 1 year ago

Ive been told something similar but thats not the be all end all.

I have ADHD. Recently diagnosed and was asked "Well what does that change?" The thing is, coping mechanisms aren't typically healthy or optimal. Replacing them with healthier habits, or strategies to manage your condition or using therapy and or meds is typically much better for you overall.

Sure you can get by with coping mechanisms but it doesn't mean you have to. You have a right to know and to feel in control of yourself and your life. Even just knowing for sure can be helpful.

[–] KazuyaDarklight@lemmy.world 14 points 1 year ago (1 children)

I'm reading it more in the direction of, "If we're on the fence/think your case is borderline, make your argument for why we should go ahead and give you a positive diagnosis." or a negative one if you're there at the behest of someone else and are hoping for negative.

But it may also be the kind of question that helps them get a feeling for how you currently perceive your life in relation to your perceived but currently undiagnosed condition. Which can be informative. How you talk about it may even carry indicators in some instances.

[–] octoperson@sh.itjust.works 5 points 1 year ago (1 children)

Oh that's all reasonable information to ask for. And I hadn't considered the possibility of someone filling it reluctantly at a doctor's request, so thanks for that. But the format of the question rubs me the wrong way.

"Bearing in mind that our resources are limited, and that you might be mistaken, write a persuasive speech about why you, in particular, merit our attention". I'm (I think) decently able to express myself. I'm not great at self-advocacy, but I can grit my teeth and do it anyway. Not everyone filling this form will have those advantages. It feels like a barrier for people to self select out of the process, and I have to wonder if was clinicians or administrators that put it there.

[–] 4am@lemm.ee 1 points 1 year ago* (last edited 1 year ago) (1 children)

Are you paraphrasing in your quote how you perceived the question? Or does it literally say that somewhere else on the page?

I don’t think that the intent of the question in the photo exists with the intent to blow off patients who the doctors feel are wasting their time or something; it’s almost certainly there to determine the mindset of the prospective diagnosee, and is probably worded specifically to elicit a response such as yours.

I think you should answer it honestly; if you feel it was designed to push you away then explain your analysis. The fact that you even saw it this way could possibly be helpful to them in diagnosing a condition that is almost entirely reliant on the patient externalizing their experiences accurately.

(I can’t say if it would make them lean one way or another towards a positive diagnosis.)

[–] octoperson@sh.itjust.works 1 points 1 year ago (1 children)

Oh no, that was my perception in my words. If there was anything so explicitly hostile I would have taken a picture of that instead.

Some context for my reaction - it has a cover letter that mentioned the high demand on the service and 24+ month wait times. Health service provision here (the UK) is highly politicised (as it is everywhere), and services are always under pressure to cut their wait lists. The application pack came in separate sections for standardised assessment forms, and one for admin details like contact numbers and medical history. This question was in the admin section.

I appreciate your point of view though, and it's a reasonable possibility. I'll keep it in mind when I fill it out.

[–] 4am@lemm.ee 2 points 1 year ago

Hmm, that sounds a little more like I could possibly be incorrect, given that context. 😬

Pretty sad they think people would just waste their time instead of trying to give help to those who need it. Like, that’s your primary purpose! Wtf.

[–] Skydancer@pawb.social 10 points 1 year ago

In the US, this is a common question from most psychologists and therapists. On the one hand, insurance companies require a diagnosis code in order to pay for any treatment and the same is true for certain kinds of government assistance. On the other, being diagnosed with a mental health condition considered "serious" can trigger various consequences for employment (especially if it involves security clearances), court (particularly custody battles), and random social consequences from people (especially family) who still believe neurodivergence is something to be ashamed of.

Typically the person asking is trying to find out whether an official diagnosis would be helpful or harmful to you, so they know what to put on the billing or other paperwork without causing more harm than good. This is really better done in a conversation where they explain that than on a form where they don't, though.

[–] rockSlayer@lemmy.world 8 points 1 year ago

Technically I'm not medically confirmed, but a lot of behaviors I do without thinking makes a lot more sense to me since I was diagnosed by a social worker in school. It helps me be more conscious of my actions, and the diagnosis helped me rein in my anger and control my fixations. I still bump into stuff, but I'm more aware of my surroundings because I know I need to be. Knowledge is half the battle.

[–] Kayel@aussie.zone 8 points 1 year ago* (last edited 1 year ago)

In Australia an official diagnosis can be used against you in legal proceedings. Such as, custody hearings. For this reason medical professionals will often recommended against official diagnosis as an adult, unless the diagnosis will have beneficial outcomes.

Alternatively, they may just be trying to identify your goals. This will inform them how to structure their therapy. No point working on an area which doesn't affect your quality of life or one you don't care about and won't do the homework for. If there is no therapy for your concerns and a diagnosis won't help, they shouldn't waste your time and money getting one.

[–] Deestan@lemmy.world 6 points 1 year ago (1 children)

I am unreasonably annoyed at this - they as professionals should know what the value of a diagnosis is and tell you about any pros and cons.

You're your best advocate, they are just working for you

[–] octoperson@sh.itjust.works 5 points 1 year ago (2 children)

Alternate question: what impact did your diagnosis, confirmed or otherwise, have on your life?

[–] bionicjoey@lemmy.ca 9 points 1 year ago (1 children)

It confirmed what I had long suspected, and gave me more language to describe the challenges I face

[–] octoperson@sh.itjust.works 3 points 1 year ago (1 children)

Yeah words are tools for thinking and they're so valuable, in a way that's hard to quantify to other people. In my current situation of self-suspecting, it's like I've been shown the tools, but I have to use them sneakily because I haven't been given permission.

[–] bionicjoey@lemmy.ca 5 points 1 year ago (1 children)

Yes. Nullifying imposter syndrome was another important outcome of my diagnosis.

[–] gandalf_der_12te@feddit.de 1 points 1 year ago (1 children)

which is, in other words, nullifying subconscious gaslighting into thinking that you're just not trying hard enough.

[–] bionicjoey@lemmy.ca 3 points 1 year ago

True, but sometimes if your brain is gaslighting you, you need someone else to tell you you're not crazy

[–] Zehzin@lemmy.world 4 points 1 year ago (1 children)

It got me acceptance from myself, understanding from others and a job I enjoy that pays well.

Also now I pay half price on movie tickets.

[–] PM_me_your_vagina_thanks@kbin.social 2 points 1 year ago (1 children)

Also now I pay half price on movie tickets.

Hold up, what now?

[–] Zehzin@lemmy.world 2 points 1 year ago (1 children)

Disability benefits baybeeee

Depends on where you live though.

[–] PM_me_your_vagina_thanks@kbin.social 3 points 1 year ago (1 children)

UK, is it the CEA card you're talking about? Either way, thank you for getting me to have a look :D

[–] Zehzin@lemmy.world 4 points 1 year ago* (last edited 1 year ago)

Here in Brazil autism has the same protections as disabilities, and that includes half off tickets to "cultural events".

It's always worth checking your local laws, you might be exempt from some taxes or even get free public transportation

[–] Diabolo96@lemmy.dbzer0.com 4 points 1 year ago

I understood the question as asking if you have always felt weird and not the like other persons and you expect the autism diagnosis to explain it then there's a chance that it wasn't autism that made you feel different and you are just different/ We don't know why you feel like that yet.

[–] DessertStorms@kbin.social 4 points 1 year ago

I hate this.
This kind of question has come up again and again when I've tried to access services and support, as if the people who work there don't know what they can or cannot provide and/or help with, and it's entirely up to me, the person who doesn't work there or know exactly what they can offer, to tell them what they can do for me.
Like, what?
To me it feels like a deliberate barrier, and I often fall at it out of sheer frustration (and they have one less person to support, which seems to be the objective).

[–] nucleative@lemmy.world 3 points 1 year ago* (last edited 1 year ago)

I read this as a filter to better understand the patient's intentions for coming in, so the clinic can best address the root concern.

Going to get an ADHD diagnosis is somewhat in vogue at the moment but might have unintended consequences. Somebody hears about the symptoms, sees themselves having them too, and goes for a screening, perhaps hoping for a solution to some concerns in their life.

Some of those people will actually be helped by treatment, while some of them may be looking in the wrong place for whatever reason.