I run an ADHD/ASD assessment service

[Trolleydolly123]

As the title says, curious to hear questions/thoughts.

Do you struggle to brush your teeth because of the discomfort of ‘nippy’ toothpaste?

Guessing that "nippy" refers to the mint flavour here and that this affects you personally. Children's toothpaste works as well as adults' toothpaste and comes in fruit flavours. You can also buy toothpastes flavoured with fennel or cloves. I hope that this helps.

Yes, one of my old school friends mum always used children's toothpaste because she was in a car crash while sucking on a mint and she found the taste of mint triggering after that.

Hi again, @Trolleydolly123

I think the best question to ask you is: in your experience is it common for people who've sought an assessment, and been given a diagnosis, to regret doing so, to feel that it was a mistake?

The words the assessor used when she gave me the diagnosis were that I am "high functioning, very high functioning". That's not how it feels to be me, btw, but it's made me wonder if adult assessments can be more difficult i.e. due to lack of historic background information (I went back through all my school reports, GP clinical notes etc). My daughter was the only one who could give supplemental information and the assessor met me once.

Do you ever think that seeking a second opinion is a useful thing to do?
TY

Hi, no I cant recall anyone who regretted dx, that being said we dont see people after the assessment is complete, so unless they contacted us to give that feedback, we wouldnt know.

I would guess that 'very high functioning' might suggest you didnt score highly one or more of the 3 areas, social and emotional communication, sensory and restrictive repetitive behaviours, but highly enough to be diagnosed.
We would not diagnose with one appointment, it would a number over time with interview from someone who has known you well across your life,ideally parent if possible.

We wouldnt in my service re-assess someone to 'undiagnose' but you may be able to discuss with the provider.

I would give some thought however to how much it really matters,if you dont feel a dx resonates with you, you dont have to identify or consider yourself autistic. Equally i would say to anyone thinking about dx seeking, think about what will it mean, what will it change and if its 'needed' to have a meaningful impact on your life. If its a no/maybe, then is it really necessary? And should satisfying curiousity fall to the healthcare system, but thats a thread in itself :)

Ultimately if I was in your shoes and didnt agree with the diagnosis, I would make the choice to disregard it and move on. I hope thats helpful and doesnt sound dismissive. Best of luck.
(I have also assumed you refer to ASD not ADHD, apologies if I have got that wrong)

Yess, the minty strong fluoride toothpaste is an attack on senses, and burns almost. I fare much better now that I can use flavoured children’s pastes or my current go-to is the Hismile peach ice tea one from HomeBargains. Showers I avoid for the hot and cold feeling unpleasant, but realised years ago I am fine in a bath as can sink into it. Sensory overwhelm is better using Loop ear plugs in public/noisy areas, blocks out the worst of it.

So many life hacks I have had in my 50 years I didn’t even consider being a sign of neurodivergence until perimenopause made coping impossible. Couldn’t manage working FT anymore. Antidepressants and CBT didn’t help. Went PT at work, was diagnosed, just starting ADHD medication and it is amazing. Never had such a clear calm brain. Sensory issues are there (as the ASD can’t be medicated) but for the ADHD symptoms medication has been life changing. I hope it helps me to get back to full time work. Everything I have funded myself, as NHS queues are so long.

And no, I do not qualify for, or claim for any benefits.. and even if in the past I may have been able to apply for PIP to help pay for my meds, with the tightening rules I don’t think I would qualify, even if the meds I mean I could work FT.

My question is, why do you need to be diagnosed to read a book about ADHD coping strategies?

You can just buy them, it's a one click impulse purchase on Kindle - if you have the executive function to ask your GP for a referral you can manage this. You also don't need permission to do the things they recommend. You can even do them if you're NT.

I actually think a lot of these books are really useful and they really helped me to set up my environment in a way that matched my brain and not feel like I was fighting it.

@Trolleydolly123 Equally i would say to anyone thinking about dx seeking, think about what will it mean, what will it change and if its 'needed' to have a meaningful impact on your life. If its a no/maybe, then is it really necessary? And should satisfying curiousity fall to the healthcare system, but thats a thread in itself :)

I agree with this. But I think a lot of people seek dx because it's one of the most rational ways to navigate the state school system or equiv. at work, which is a problem with those systems not a sign that they actually need dx

Agree especially your line saying you dont need permission to do the things the books recommend.

So to give an idea of the reality of referrals, below are some examples of what we receive, all are appropriate to be accepted after screening. Figures in region of 400 per month with around 40 being seen/closed. The rest are on the ever growing wait list.

A: male 25 in psychiatric bed on a ward, unable to function independently, range of comorbid MH issues and lots of indicators pointing to ASD. Cant be discharged due to no suitable placement and needs dx to access suitable supported living. Current psych bed costing ££££ per week and preventing admission for another acutely unwell person in community.

B. 55 yr old female, feels after discussion with group of friends they all meet criteria for ADHD so all ask GP to refer, giving range of symptoms to justify referral. All of the group are referred.

C: Retired highly skilled professional married for 40 years with 5 degrees, highly successful in their field, curious about ASD due to struggling without routine of work post retirement.

D: 19 year old male victim of county lines, numerous arrests and facing prison. Vulnerable to extreme exploitation, high risk crimes, poor impulse control and no family support. Range of professionals think ADHD and are keen for dx to access meds to reduce high risk behaviours, fear of death or prison due to.lifestyle.

E: Married employed reasonably successful aged 47 curious about ASD as it seems to fit, not really bothered either way but can show enough symptoms to warrant acceptance.

All of these meet criteria and are accepted to wait list. Person A is seen sooner due to hospital.admission and will be seen in 6 to 12 months. The rest are seen in date order of referral. So for example, E is assessed quicker than D, due to being referred beforehand.

This is the accurate picture of what ND services across most of the UK are faced with.

@HistoryisadiscardedVHS do you know for sure they had no problems behind closed doors? I fit that description but tried to commit suicide several times as a teenager

Do you think diagnosis chasers exists? I am genuinely curious my oldest child was diagnosed relatively quickly and easily by the NHS about 9 years ago with autism and ADHD. It was very obvious from a young age he is autistic.

My middle child is now on the waitlist for assessment but is nowhere near as high needs as my eldest child but the school recommended we refer him for testing (we do see traits ourselves to) but I am meeting more and more people who want their kids tested but nobody else sees any indicators of asd or ADHD. I know some people can mask well but would kids with no evidence from any other source such as school or professionals even get through triage?

I think that what ideally people/parents should want above anything is a reliable,robust, evidence based assessment of need (or not need), not just a diagnosis. But as a society we become focussed on the label, rather than being needs led.
Diagnosis can open doors which is great, and treatment can be life changing, but there also undeniable secondary gains also in some cases.

I needed the DX to give myself permission to do things like wear sunglasses. Even with the DX, I can still hear the other girls at school saying "stop being weird" when I do the things that make me more comfortable. I think NT people underestimate how much ND people are bullied into masking and how hard it is to break out of that.

I've also stopped hating myself for my past social mistakes because I now know why I made them. I last self-harmed before my DX and the urge to do so has gone.

And the DX unlocked reasonable adjustments at work, which is making a huge positive impact on my life.

i have a GP appointment to discuss a referral for assessment next month.
i'm 50's, female with autistic child (diagnosed), another having adhd assessment now, diagnosed close relatives with autism and a load of others who are blatantly autistic.
my private counsellor recommended i see the GP for assessment. this is due to a history that just 'adds up' from childhood through to teens twenties and beyond. by my 40's i'd learned the rules so started to manage how i behaved and reacted in the world better. but my relationship history is a car crash, i can't manage money very well at all, i'm impulsive then reclusive and 'peopled out'. i talk a lot and very fast and leap from task to task half done then end up hyper focussed on minutiae. i bafflingly have a successful career but have moved jobs a lot as i've got bored or my manager hasn't understood me so haven't embraced my skills. not their fault but that's one area a diagnosis could help i think. i have had people fall out with me because i've not recognised them in the street and if i see someone in the 'wrong' setting eg work colleague at a shopping centre, school run mum in the pub, i struggle to interact.
i have things in my past that i can't let go of because i have a hyper sense of justice. things that need reporting to police but i haven't because i am scared the consequences of this will break me once and for all. this is where the counsellor comes in and i've been working through this with her.
i suspect i have both. but because i an skilled at masking as i've learned the rules, how do i convince the gp to refer me and that i'm not jumping on the bandwagon? i've never seen tik tok or looked at any SM about this topic.
how should i best prepare and what things should i make sure i include in a ten minute appointment. the gp i'm seeing is lovely so that's a good start as i can talk to her.
@Trolleydolly123 any advice appreciated.

It’s lovely to read this. I really am genuinely very pleased for you. What a weight to have lifted off.

@artdecomirror I'd have a look at right to choose. The NHS waiting lists in my area are more than 2 years whereas right to choose for me was a few months. I've been so pleased it and like all the pp it has been life changing.

Similar story here yet we're the type that from the outside would get written off as wanting it for "self discovery". I think my gp even said something similar initially even when I'd carefully opened up about the impact it's had on my life.

I've been on elvanse for 2 months now and the difference is hard to describe but read soemhwere it's like glasses for the brain and its so true. I can think and "see" much more clearly. It's made a difference to overwhelm and anxiety and has impacted my kids hugely having me more functioning.

I fear that adult women who find this life changing won't ever be prioritised... Because women. Yet we're often fobbed off for years with antidepressants/anti anxiety. I so wish there were much more resources put into this and into children so the backlog can be caught up and a functioning system for the future put in place.

Thanks that makes total sense. I genuinely worry that kids in most need of help are being missed because of the huge influx of people asking for assessment. My oldest needed so much support that had he not got that he wouldn't manage day to day life. With the right support from a young age he has done really well and copes in school (supported ASN base etc). The diagnosis ensured he got the ASN base place.

Hi, it sounds like given a range you reasons you believe you likely are autistic, what i would give thought to is:

• do I need someone to 'tell' me what I feel I know
• what difference - ACTUAL difference will being told yes or no make to day to day life
• can I identify as autistic, tell employer I am autistic and uses RAs - (not all employers require proof beyond your word)
• Am I prepared to wait years and years
• Can I afford to pay privately

Re GP, explain family history and a range of challenges across your life. Every area will be different in terms of wait times but likely across the board years, some areas estimate 5, some 10 to 15.

See above my post about the referrals we get, I do think its worth thinking about for anyone who can pay does so, as there are lots of people who truly cannot, waiting longer and longer due to skilled successful professionals diagnosis seeking for a range of reasons. I am not minimising why, but kindly, please do give some thought to that. Best of luck.

@Trolleydolly123 I am more than happy to pay private (well not exactly happy but willing 😂) my daughters school has a blanket policy of not cooperating with private referrals.

I have challenged this (think same consultant working privately and nhs - would only complete forms if nhs hat on) and they have agreed to change it but I am still waiting for this to be implemented.

they only even agreed a CAMHS referral when I broke down and spewed out the family history I mentioned on a previous post.

Gosh its so hard isnt, such a minefield to navigate.

Thats an interesting stance from school, i imagine its linked to the RTC/private issue, there is a view and it is sometimes valid that RTC/private is just 'buying' a diagnosis, ive even heard GPs say that.

I think if you want it done and quickly, go private, but only if you really need it :)

i think the biggest differences it would make would be to find some inner peace with my past as i am unbelievably hyper critical of decisions i did or didn't make. not permission to absolve responsibility where it is needed but making sense of the past to improve the future. i am avoiding any hint of a relationship because i can't trust myself to spot red flags and not end up in an abusive and coercive controlling relationship yet again. i've had specialist DV counselling that just didn't hit the mark. i felt no better at the end than the beginning as it just told me how amazing i was doing and how strong i was when i was nothing if the sort.

and i do think from an employment perspective it would help hugely. when i have a line manager who 'gets me' i can be quite remarkable at work, when they don't it is a nightmare and i have to leave.

The validity of having someone skilled and trained to make an independent assessment of me rather than me 'self identifying' is important. it sits well with my black and white thought processes.

i could consider private at a push but would only look at a private professional who also does NHS work.

thanks for taking the time to reply.

Yes that makes perfect sense. A private asssessor who also does NHS work is a really sensible idea.

@Trolleydolly123 she has 2 internal, 2 external suspensions in 2 months and is in Y9 so speed is of the essence!

I just feel this post says it all and I want to boost it on every page.

Which of the people do you think aren't deserving of an assessment then?