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Neurodiverse Mumsnetters

Use this forum to discuss neurodiverse parenting.

Can we talk about impairment?

10 replies

LadyCordeliaFitzgerald · 10/03/2022 22:28

Impairment is a key requirement for diagnosis. My understanding is that it’s probably about gatekeeping access to funding. Partly due to the medical model roots of psychiatry and a reluctance to label people as “wrong” or defective just for being different.

But it also means that access to understanding and help is cut off until there is a problem and sometimes those problems make it almost impossible to go down the diagnosis pathway.

I’m rambling a bit because I’m tired and overwhelmed and brain dumping here.

I’m just not sure that I agree that impairment should be a deciding factor. Why can’t you be diagnosed (identified?) when your functioning is optimal particularly as these things are seldom static.

Sometimes a life event, like coping with a newborn is the thing that tips us from doing well to struggling. But if we were already flagged, we might access support earlier.

OP posts:
BarrowInFurnessRailwayStation · 14/03/2022 23:31

I think it is due to gatekeeping and ableism within the NHS. The medical model of disability reinforces the ableism.

LadyCordeliaFitzgerald · 15/03/2022 17:27

@BarrowInFurnessRailwayStation yes.

I’m mulling over whether to try and pursue a diagnosis of adhd for dd, who is functioning just fine (being a girl). I don’t think it would succeed at the moment because while the traits are there she’s not struggling in any obvious way.
But neither was I at her age.

These things aren’t quick so from the time she starts to struggle (if obviously) it could be a long wait to get meaningful support in place. And her experience of herself as a person with ND is negative.

But I don’t want to armchair diagnose her either - I tend to get into a mindset and see things through the filter of an obsessive interest for a while. So I could could just be completely wrong.

I’d really value the input of a professional skilled in adhd diagnosis but … (too tired to finish all the buts)

OP posts:
BlackeyedSusan · 17/03/2022 20:36

I wish I had tried for diagnoisis for dd earlier, but on the other hand would there have been enough evidence earlier? (may be when we went for the referral and there was a 26 month wait. )

Impairment is difficult as it depends on ones' particular presentation and perceptions and society you exist in.

ClumpingBambooIsALie · 22/03/2022 02:24

Putting it bluntly, IMO if you're not impaired, whether that's latent or active, you're not autistic.

What I mean by latent is things like this:

— There are some people who have a living framework set up just perfectly for them to function within — for example, your archetypal historical scatty male academic with permanent rooms in college and a housekeeper and a secretary, who just has to wander down to hall for his meals occasionally and gets clean underpants magically appearing in his chest of drawers. (Other ASD-friendly lifestyles are available…) But put him in lots of other fairly ordinary situations, and he won't react as people might expect someone to react.

— The classic "child seems okay, gets older, goes to secondary school, social demands increase, no longer able to mask, stress causes mental health issues to pop up" scenario you see in teenage girls. The impairments were there before, just invisible/latent.

— People who cope okay with the structure of living at home and going to school, but fall apart when they go to university and suddenly they're expected to exist in a freewheeling structureless void. It could've been very hard to see where their impairments lay while they were within a predictable environment with various things taken care of.

I find myself very irked, though, when a self-diagnosed autistic with a quirky, high-maintenance, uncomfortable haircut, who has YouTube videos performing the new stims they've taught themselves this week, and who actively chooses not to pursue assessment even though it would be available to them, decides to tell the world that it's a difference, not a disability.

Obviously I've no problem with people thinking they may be (or probably are) autistic before diagnosis, else hardly anybody would get an adult diagnosis. And obviously people in this position should be able to take advantage of the online autistic community. And I've no problem with people in this position deciding not to pursue an assessment, whatever the reason, and continuing to participate on that basis. But people who diagnose themselves (i.e. not saying "I believe I am almost certainly autistic", but saying "I am autistic" based on their own self-assessment), and then insist on behalf of autistics, speaking publicly as autistics, that it isn't a disability? That's… kind of minimising it, without being in a legitimate position to do so. Maybe these people don't think they're impaired and don't believe ASD is a disability because they're… not autistic. People who have been diagnosed with ASD and prefer to frame their own ASD as a difference rather than a disability, sure, fine, for yourself that's great, but it's very unhelpful to redefine everyone else's.

I can see the appeal of talking about identification of individuals with divergent neurotypes rather than talking about diagnosis of neurodevelopmental disorder. I just worry that it risks making things like ASD seem more… trivial, somehow? The medical terminology does at least lend some kind of air of legitimacy.

ClumpingBambooIsALie · 22/03/2022 02:29

And obviously if you're going by social model, which I more or less am here (to at least some extent), that's active or latent impairment causing disability within the context of the society you live in (cf. the classic point of deafness being not really a disability in a society where everyone's deaf).

Imitatingdory · 22/03/2022 13:14

ClumpingBambooIsALie your post articulates my thoughts very well, much better than I could have written.

BlackeyedSusan · 23/03/2022 14:13

@Imitatingdory

ClumpingBambooIsALie your post articulates my thoughts very well, much better than I could have written.
Yep, me too..good post clumping.
ClumpingBambooIsALie · 23/03/2022 22:00

Thanks both, was worried I'd get backlash for various reasons.

I can see from paying slightly more wakeful attention than I had available to me at 2.30am that OP primarily had ADHD in mind, whereas I responded with reference to ASD, but I feel like it's basically the same principle (I'm diagnosed with both, but tend to think about the ASD first because it was diagnosed earlier and has more of an impact on me).

I think some of the problem here is fuzziness in the definition of "impairment". I'm guessing everyone's familiar with the social model of disability, where you might have an impairment that means you can't climb stairs (and it's considered an impairment because typically humans can climb stairs), but disability comes into play because you live in an environment that requires stair-climbing and are disabled by that environment. Whereas the medical model is more that the disability is the inability to climb stairs.

When OP talks about impairment, I think she's talking about having difficulty with certain things which people can typically manage without a problem, but is concerned about how to discuss/diagnose people currently living in an environment that doesn't require those capabilities. Under the social model, the impairment still exists, as the person has difficulty with something that people can typically manage without problems, but as the environment does not demand that capability, the person is not disabled.

It seems to me like OP is thinking of an impairment as being something which has to be actively causing difficulty right now, and hence things being okay right now thanks to a suitable environment would disqualify someone from diagnosis. That's not my understanding of impairment.

But it gets complicated when your difficulties are in areas where the demands made of you will be very different in different stages of life, and where you're dealing with capabilities that are mental/emotional/social/behavioural. A lot of the disability theories and models are designed around the needs of people with mobility or sensory impairments, and don't map well onto people whose difficulties are less tangible, and which, in the case of ADHD and ASD, are to some extent on a continuum with the capabilities of non-disabled people.

I dunno… it's all really difficult and I think there does need to be some kind of "gatekeeping", because resources are limited and people need words they can use to find people with similar experiences to themselves.

ClumpingBambooIsALie · 23/03/2022 22:40

it gets complicated when your difficulties are in areas where the demands made of you will be very different in different stages of life

I should've been clearer here, but with this part I was alluding to the fact that although you can consider the impairment to be present even where the environment isn't disabling, it can be hard to evidence that impairment if the person hasn't yet reached the stage of life where the impairment will have a significant effect on their functioning. I'm not really sure how diagnostic procedures could be changed to account for this, but it must be a difficult position to be in, seeing that your child might really struggle with certain things in the future but knowing it's going to be difficult for anyone to make a confident diagnosis when that struggling hasn't actually happened yet.

Removing the impairment criterion altogether would be a problem, because why would you even need or want doctors to get involved if there's no difficulty? Perhaps we need two totally separate things — an identity people can opt into with quirky haircuts and fidget toys, and diagnosed medical conditions with impairments and funding and reasonable adjustments.

Imitatingdory · 24/03/2022 09:17

Clumping yet again I think your posts are excellent, and apply equally to ASD as they do ADHD.

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