Simon Baron-Cohen can stuff right off

[Bat Macdui]

Bats, I think this might be a situation where the guidelines and diagnostic criteria used by medical professionals may not be exactly what everyone would like them to be. I do agree with you that there are loads of theories now which suggest that we should be looking at things a bit differently, but assessments are still made by assessing severity and looking at this as a spectrum. A spectrum by definition means it goes from one end to the other. It’s been a while since I’ve heard a healthcare professional talk about high or low functioning autism, but severe or less severe autism in relation to certain features is part of the DSM, and the entire diagnostic process is about assessing how someone’s brain works in relation to various factors, and that ultimately means that a number of scoring systems are used and the numerical result has to score above a certain threshold in order to be considered diagnostic. I don’t know what a better or preferable way would be to phrase it, but the link suggests that talking about severity is not ok, and that is a bit hard to get around.

I definitely agree with you about the diagnostic criteria. I just think it is so incredibly unhelpful to talk about a spectrum as linear. It might be the way the diagnostic criteria currently works, but in terms of working with autistic people and their families, it becomes incredibly limiting, which then impacts on the quality of care received and the interventions recommended. Lorna Wing said 'nature never draws a line without smudging it'. :)) Her work with Judith Gould articulated the spectrum idea as we understand it now, but the word itself is obviously now unhelpful.

The three levels of support needs do provide a helpful guide for parents and autistic people, not least because they then feed into other structures of state such as getting the right amount of support in school and from social services. But overall, it remains unhelpful because it perpetuates this idea that there is a line, which there isn't. It perpetuates the idea that people at the top end of that line - those who used to be diagnosed Asperger's - don't need support (level 1) and those at the 'bottom' of the line as lacking in the ability to make their own decision, or have a say in their care (level 3).

So whilst we are held to the current criteria- which is better than the old one - I think it is important to remain open to the idea that levels of support identified through this process should only be a guide and each person should get the amount of support they need. If you have someone with a spiky profile who comes out at 1 then they're not going to get support for the things they struggle with, because on the surface it might seem they can manage a relatively independent life. If you get someone non-verbal with comorbidities on a level 3, there is tendency to assume that person cannot not make decisions simply because they can't articulate them, or that they have learning disabilities because they can't speak.

[Smunder Woman]

I really struggle with talking about autism. I feel that, when I have my academic hat on, I have a responsibility to use appropriate language, but I can't work out what that should be (nor what I want it to be).

[Bat Macdui]

Do you have to use a mix of 'people with autism' and 'autistic'? :))

I think we'll* probably find a way through to some way of using 'severe' or 'high functioning' or 'level 2' etc at some point. I don't really object enormously to using the terms - they serve a purpose in some ways. What I think needs to happen though is for there to be a much wider understanding that they're not black and white, they're shorthand, and the nuance that sits behind them needs to be appreciated.

*people, everyone, healthcare, autistics, even the rabid screaming aspie supremacists

[Smunder Woman]

No, I have said I use autistic and that is it. It's more trying to discuss severity without saying severity. Or just bellowing that everyone is different. :))

[Bat Macdui]

WE ARE ALL INDIVIDUALS. :))

[Smunder Woman]

WE ARE ALL INDIVIDUALS. :))

Pretty much where I'm at :))

[Figaro]

I guess the way I think about it would be similar to the way I would think about most things - you do have to adopt a somewhat black and white approach to diagnose most things, otherwise the diagnostic process is meaningless, but that doesn’t mean that you can apply the same approach to someone’s experience of having this (or any) condition. Assessing it by looking at the level of support needed seems to me geared towards those who are from any way of looking at it quite profoundly disabled, because there can be so many ways that someone can be challenged by all sorts of conditions for which there isn’t “support” per se available. Viewing it in that way essentially sets up the expectation that you can’t *really* be affected by autism if you can speak. Level 1 doesn’t mean not needing support, it just means needing less support. Someone who doesn’t need “support” would usually not meet the criteria for a diagnosis, according to the DSM. Depending on your definition of “support”, that’s arguably not right, though in general I think we have broadened that definition enough now that it works ok.

But equally, those who are affected quite profoundly and are non verbal, unable to wash or dress themselves etc, require significant support which may be in the form of residential care are not well served by the spiky profile theory; generally they are diagnosed as small children and their parents usually find those theories to be unhelpful and upsetting because frankly they may never identify any spikes. There are patient groups advocating hard for the use of a shift in language away from talking about severity etc, but there are also those who are really distressed by the possibility that that might happen and feel that their “diagnosis”’has is being taken over by those who have the verbal skills to advocate for themselves. In some ways the whole diagnostic process needs a rethink, although, I’m not sure what that should be. I know there’s a new (ish) diagnosis of social communication disorder (I think it’s called) which was intended to help a bit, but i’m not sure it has. I used to work in an area where there was a residential home for young adults and most of them needed residential care due to their profound autism with a few having other diagnoses like cerebral palsy; it was a really challenging and quite sad place to visit and I do understand why the relatives and carers of those men and women find some of the newer theories and a desire not to talk about severity upsetting. It is just about impossible not to view a condition leaving someone requiring 24/7 1:1 care as severe, however, obviously that is a very small minority and the expectation that that's what autism is can be so unhelpful for the vast majority. To be honest I’m not sure how you can accommodate everyone under one diagnostic umbrella.

[Bat Macdui]

Given that one diagnostic umbrella is all we have at the moment, the main principle is to educate people to understand more. I've seen those discussions play out a million times from both sides, mostly in completely unhelpful ways. Damian Milton is good to read on this; he's an autistic academic working at the Tizard Centre in Kent, with an autistic son with learning disabilities who needs a lot of care. He thinks we can reach a middle ground of it all, and I am happy to believe him. His book, Mismatch of Salience covers this off, included pointing out that it's quite useful for autistic adults who can advocate to advocate for those who need more care, as they might be able to see manifestations of spiky profile that carers and parents might not.

[Smunder Woman]

I second Damien Milton. He's pretty much who I'm aligning myself with for research.

[Figaro]

They are generally very unhelpful, but I guess all I’m saying is that for people working in healthcare the most neutral way to go is generally to use the language which is recommended by the current guidelines, otherwise you end up (inadvertently, perhaps) allying yourself with one side of a debate you would rather not get into. I think parents tend to feel they know their own children best, however, I can see your point as well, and I know that theory has many supporters. I also know that using the “accepted” language is also essentially allying oneself with a particular theory, but it’s about as neutral as it’s possible to get. There are all sorts of other examples where the “official” language for many many medical and psychiatric conditions is felt to be either unhelpful, or inaccurate, or irrelevant, by some people who have the condition, and vitally important by others. I think we just need to try to work with it and try to understand why someone might not feel it’s applicable to them, and to see if there are ways to make the system and diagnostic process work to help them in spite of its flaws. Someone who has had a condition for their whole life knows an awful lot more about their own experience of that condition than any healthcare professional they’re going to come into contact with, but they may not know as much about the diagnostic process and the constraints of what the NHS can offer. Some people choose not to be assessed at all because they don’t want to be scored, or prefer a different sort of assessment which may not be available on the nhs. There is a private neu.ro..feed...back clinic here which offers alternative assessment and management options for autism and epilepsy, they are dismissed as quacks by every neurologist and psychiatrist I’ve heard of, but for some people it seems to prove helpful, at least if you can afford it. I am a little sceptical about a middle ground really, but you never know.

[Figaro]

I will have a look at Damian Milton, I’ve been recommended his work before (although not that particular book) by a psychologist friend.

An ex of mine was involved in the fetal /amniotic testosterone theory research so I’m always keen for more arguments against that :))

[Lily]

I went to my local GP about this and he totally dismissed me, despite having school reports and a work record that have a LOT of indicators of ADHD. He referred me for CBT, but I think it's more than just depression/anxiety as I've been like this for so long. I'm considering a private diagnosis, just to see if it is what I think it is, but then I wouldn't be able to afford drugs, so it would have to be finding coping mechanisms.

I am no use on any of the other stuff, but just to say when I've had private treatment (dermatologist, psychiatrist) I have never had to pay for any of the medication apart from the first week or so of Roaccutane. The rest of it I've all had prescribed on the NHS or via my GP. So please don't be put off seeking private treatment on that basis.

[Figaro]

That is generally true however medication for ADHD is usually coded as an Amber or red drug on most formularies, meaning a GP can’t prescribe until things are stable, which usually means having been taking it for 3 months or so. They have quite a few contraindications and potential adverse effects so most CCGs don’t want GPs starting them or prescribing them at all until a specialist has ascertained the safety and efficacy for that person. Having said that I’ve just looked up the cost and it’s only about £15-30 per prescription (they are controlled drugs so you can only have a maximum of 1 month at a time), so not a massive amount more than an nhs prescription fee and definitely shouldn’t be hundreds.

[Cerise]

J’s first prescription was private and cost me £75. After that, the GP prescribed.

[Figaro]

£75

[Lily]

That is generally true however medication for ADHD is usually coded as an Amber or red drug on most formularies, meaning a GP can’t prescribe until things are stable, which usually means having been taking it for 3 months or so. They have quite a few contraindications and potential adverse effects so most CCGs don’t want GPs starting them or prescribing them at all until a specialist has ascertained the safety and efficacy for that person. Having said that I’ve just looked up the cost and it’s only about £15-30 per prescription (they are controlled drugs so you can only have a maximum of 1 month at a time), so not a massive amount more than an nhs prescription fee and definitely shouldn’t be hundreds.

Ah, sorry.

[Figaro]

Don’t be sorry! I think it’s awful that people get slapped with extra charges sometimes and end up paying way more than the drugs cost. Some drugs are actually cheaper on a private prescription, and we pay more when we pay a prescription fee. It’s more complicated for these drugs in adults though as they are not licensed in adults and have potentially more side effects than they do in children.

[Bat Macdui]

On a lighter note: my life. :lol:

[Smunder Woman]

I have just emailed T. emple G. randin to ask for an interview

[Ella]

I love her so much!