Simon Baron-Cohen can stuff right off

[Ruby]

(not me btw :)) )

[Bat Macdui]

For the prescription amphetamines, OBVIOUSLY. :))

I asked my GP to refer me earlier this year. If I DO have ADHD (which seems very probable), I want to try medication. I am absolutely bloody sick of having to have a fight with myself to do anything. I just want to sit down in the morning and knock out a couple of hours of work without needing constant distraction, having to undertake a Herculean effort to get past paralysis and procrastination and wandering off in the middle because something else seems imperative, like cleaning the sink. :)) There's a lot of pros and cons to medication but I can honestly say of every adult I've spoken to/chatted with on social media who has tried it after late diagnosis all of them have been absolutely positively impressed by the difference it makes. It also doesn't feel like a commitment, in the way you might view anti-depressants. The ones prescribed for adults are all short acting stimulants, so they're out of your system 12-15 hours after dose. If it doesn't work, or makes me a bit (more) haywire I can just stop.

There's also a sense for me of wanting it confirmed. There's the weight of a lifetime of thinking I am just totally shit at life. I've read this a lot and it's worse for women. We're so conditioned to be organised, domesticated, run a household, cope that not being able to in any sensible fashion can make a massive dent in your self esteem. It's that 'not shit at life' thing again.

There's another plus for me in that I could also apply for Access to Work, which can be used to fund things like coaching etc if you have ADHD. This would be very helpful if I make the leap to self employed. I will take any help I can.

Downsides: apparently the wait for an adult diagnosis is 1-2 years on the NHS. It can take a while to get the medication right, so there's lots of to and fro in that. I haven't looked into this properly but it can impact on things like car insurance, travel insurance. There's no requirement to disclose in a work environment but that's another double edged. Disclosure can bring adaptations - your employer *should* make reasonable adjustments for you to do your job. Or, your employer could be a twat who just sees something that makes it harder for you to do your job.

[Skips]

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. And then I start thinking I'm just making excuses and maybe I'm shit at life.

For me it will just be the knowing, one way or the other.

[Figaro]

I think (from observation rather than personal experience), there are a few different types of reason, but generally it’s either because the person has struggled for a long time and a diagnosis would help them to process and understand the struggles they’ve had, or sometimes (surprisingly often) it’s because of pressure from a partner who feels there is something wrong with them; usually this is a man seeking a referral after encouragement from a female partner, but not always. Those two would comprise the majority, then there are a tiny minority with disordered health related behaviour who are seeking another diagnosis to add to a long list they have already acquired, or seeking a reason for a long term sick note. I think that tiny minority are the reason some clinicians lack faith in the adult services.

The service is heavily overloaded around here with a waiting time of 18 months before assessments even commence, and many adults don’t actually end up taking medication even if they are diagnosed with ADHD for a variety of reasons. There are usually more requests for a referral for autism than ADHD. The insurance issue seems to be growing - many people find their life insurance excludes all psychiatric and neurological conditions, and often travel insurance will be very expensive or not offered. I think the people seeking a diagnosis as adults are a fairly small subset of those affected- there are also lots of adults who are evidently quite a way along the autistic spectrum, but lack the insight or desire or both to seek a diagnosis, and for whom it would I suspect so more harm than good. It’s also quite difficult for some people who are referred at their request but eventually after several years told they don’t have the diagnosis they were expecting, or perhaps that they have a different one.

[Bat Macdui]

I'm sorry, Skips, that's really unhelpful. Is it worth trying another GP? I took a completed copy of the Wender Utah rating scale (I have this on PDF, DM me an email address if you want me to send it). I also took a copy of the NICE Guidelines for referral.

The relevant bit is this:

1.2.10 Adults presenting with symptoms of ADHD in primary care or general adult psychiatric services, who do not have a childhood diagnosis of ADHD, should be referred for assessment by a mental health specialist trained in the diagnosis and treatment of ADHD, where there is evidence of typical manifestations of ADHD (hyperactivity/impulsivity and/or inattention) that:

began during childhood and have persisted throughout life

are not explained by other psychiatric diagnoses (although there may be other coexisting psychiatric conditions)

have resulted in or are associated with moderate or severe psychological, social and/or educational or occupational impairment. [2008] [2008]

I also (boots and braces) took a list of my traits identified against DSM5 diagnostic criteria.

In the event I didn't need it, my GP referred me in about 3 minutes and we spent the rest of the appointment ranting about what the Tories had done to the health service. My medical history does have massive red flags all over it though, autism, alcoholism, general batshittedness from an early age. :))

I am also thinking about private diagnosis and will probably do it in the next couple of months. It's £450-500 from what I can tell, but then there's the open endedness of medication review at about £100 per psychiatrist visit plus another £100 for the medication. I think when they have stabilised medication, you can ask the GP to prescribe but I'm not sure how that works. I assume it requires your GP to be happy to accept the verdict of your private consultant. It's obvious the costs could really mount if you needed to try a few different medications then different doses.

[mojojojo]

I’m sorry, Skips. And Bats. It sounds so difficult.

The more I read, the more I feel that M (16) has this in some form. It’s very tempting to put these things down to lazinesss/being a total daydreamer, but she can’t retain *anything*.

But, as much as the understanding and “not being shit” resonates with me, my feeling is that she’d currently be far more distressed about anything that makes her “different”. When we’ve explored the possibilities of anxiety/self esteem help before she’s been really upset and against it. She reacts really badly to any inference of not being “normal” (I am trying very hard these days to avoid that word).

Anyway, sorry for the splurge. There isn’t really anything to be done, but thank you again for sharing all of this - it’s very interesting.

[Bat Macdui]

I'm sorry, Moje, that sounds like it must be very hard for her and for you. It must be really hard to watch a child struggling. The hardest thing I find is the sheer and utter frustration with myself. I am not stupid, I can plan a bloody multi-million pound project from start to end, write it, risk assess it, run the finances and some days I can stare at a screen for a million years and not even start a list or forget what I'm doing in the middle of single task. I've gone back upstairs before to find the laundry half sorted and the bathroom half cleaned and I am wandering round in my pants looking for a letter from 6 months ago. :verm: :))

I think the people seeking a diagnosis as adults are a fairly small subset of those affected- there are also lots of adults who are evidently quite a way along the autistic spectrum, but lack the insight or desire or both to seek a diagnosis, and for whom it would I suspect so more harm than good.

Fig, this language is really unhelpful. It's generally now known the autistic spectrum isn't linear but more to do with 'spiky profile' and that terms like high functioning and low functioning etc can disguise real issues or prevent care needs from being appropriately addressed.

[mojojojo]

And right on cue she provides the perfect example - she’s just been texting in a massive panic about a maths test today, that she “only found out about yesterday” that will apparently mean that the highest gcse she can get (if it doesn’t go well) will be a C (and she “only found out” about this fact just now).

She cat be convinced that this wouldn’t be the end of the world, even though she hates maths.

I am certain that these things take her by surprise because she doesn’t listen/retain them, but I can’t help :(

[Figaro]

Which language? I don’t think I said high or low functioning. I know our local consultant doesn’t really think the spiky profile theory applies to everyone, but obviously others disagree. If someone doesn’t want to be assessed or diagnosed though then that it can be difficult to persuade them that it would be helpful to them, and just because it would be helpful for one person doesn’t mean it would be helpful for another.

Skips, you could try googling the referral criteria or form for your local adult service assuming there is one. If there isn’t one in your area then it is a bit more tricky but sometimes the CCG will fund out of area referrals, or sometimes there is a local consultant who will see you and refer out of area if they feel it is needed.

[Bat Macdui]

I think the people seeking a diagnosis as adults are a fairly small subset of those affected- there are also lots of adults who are evidently quite a way along the autistic spectrum, but lack the insight or desire or both to seek a diagnosis, and for whom it would I suspect so more harm than good.

That bit. It's not linear!!

[mojojojo]

The hardest thing I find is the sheer and utter frustration with myself. I am not stupid..

Thank you. Again, that really resonates.

[Bat Macdui]

I know our local consultant doesn’t really think the spiky profile theory applies to everyone, but obviously others disagree.

It doesn't necessarily have to apply to everyone. It obviously applies to a lot of autistic people and people with other neurodevelopmental disorders, research has shown as much and that means no linear. The autism spectrum term was coined by Lorna Wing et al when they identified Asperger's; it was never intended to be linear as their research showed.

[Figaro]

Some people find it helpful to talk about being further or less far along the spectrum rather than talking about the traditional DSM model of 3 levels of support, which is arguably quite dismissive of many people affected, but I do take your point.

[Bat Macdui]

And right on cue she provides the perfect example - she’s just been texting in a massive panic about a maths test today, that she “only found out about yesterday” that will apparently mean that the highest gcse she can get (if it doesn’t go well) will be a C (and she “only found out” about this fact just now).

She cat be convinced that this wouldn’t be the end of the world, even though she hates maths.

I am certain that these things take her by surprise because she doesn’t listen/retain them, but I can’t help :(

Catastrophising is an anecdotally reported part of ADHD. I'm bloody great at it. :)) There are systems/ ways of managing but I have to be brutally honest and I find them hard to maintain. Meditation. Mindfulness. Yoga. Diet. Fish oils. I really feel for her, school etc can be so very hard, it rewards concentration and focus and diligence and actually having a working memory.

[Bat Macdui]

Some people find it helpful to talk about being further or less far along the spectrum rather than talking about the traditional DSM model of 3 levels of support, which is arguably quite dismissive of many people affected, but I do take your point.

I don't object to that, people should be able to frame their experiences however they wish. But it is unhelpful for medical professionals to perpetuate it when it certainly isn't everyone's experience and flies contrary to most of the research currently being used to help improve autistic people's lives.

Bit tongue in cheek of me here, but this article by Kate Fox is a good read. Autism is now like Radio Two 20 years ago.

[Figaro]

In terms of the medication after a private consultant, usually there’s what’s called a shared care agreement between the NHS trust and the CCG which states at what point someone’s medication can be prescribed by their GP, what criteria they have to fulfill to be prescribed it etc. Usually after a few months I can be given GP prescriptions if there is a shared care agreement in the area, however the shared care agreements are just for NHS patients so thiscan be a challenge if you’ve been seen privately. Some GPs would still be happy to take over prescribing, assuming all the criteria that would be required for an nhs patient are fulfilled though. If you google shared care + your local mental health trust + the medication name then it usually comes up. I think here there are arrangements for methylphenidate and atomoxetine but not dexamphetamine so GPs can’t ever prescribe that here.

[mojojojo]

There are systems/ ways of managing but I have to be brutally honest and I find them hard to maintain. Meditation. Mindfulness. Yoga. Diet. Fish oils.

Thank you. I will look into this a bit more and try to find ways to introduce helpful things (whilst trying never to acknowledge that there might be anything that she needs help with :)) )

She’s vegan, so the dietary bit might be a factor. I’ll investigate supplements.

[Bat Macdui]

There are systems/ ways of managing but I have to be brutally honest and I find them hard to maintain. Meditation. Mindfulness. Yoga. Diet. Fish oils.

Thank you. I will look into this a bit more and try to find ways to introduce helpful things (whilst trying never to acknowledge that there might be anything that she needs help with :)) )

She’s vegan, so the dietary bit might be a factor. I’ll investigate supplements.

Have a poke round on Additude. There are loads of helpful things on there, mostly from people with ADHD. It's obvious that different combinations of things help different people. I find meditation helps enormously (it's just I have to make myself do it). My yoga place does a YIn class twice a month - an hour and a half of breathing exercises and holding poses - I can feel calmer for about two days after one of those. The repeated diet advice is protein and fish oil supplements. Protein might also be a bugger if she's vegan. My friend who is diagnosed manages herself without medication through yoga and diet. She helpfully also has a job that requires her to just turn up and talk (no prep, writing up) which I think helps.

[Figaro]

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.

[Skips]

Maybe this is where my problem is, I don't think I'm on the spectrum, but I have difficulties with concentration and if I do manage to get a couple of hours work done I feel drained in a way my peers don't. And I feel that way after a couple.of hours, I can never manage a full working day without proctastinating for a few hours and it's why I've consistently had bad reviews and more recently failed probation (twice in 2017 I failed probation, although one I walked before the official chat happened.

I've done some of the diagnostic tests online that Bats mentioned above and they all point to ADD (rather than adhd) but then a niggling part of my brain says I'm looking for an answer and I'm just lazy. I should push the doctor more, I may an appointment and see what happens again.