How accurate is ADHD diagnosis

[Hotdoughnut]

Thinking of getting my DD10 assessed. She gets distracted easily, seems to have seconds where she is absent, doesn't meet her full potential at school (although is above avetage), mild issues with clothes/sensory, easily gets obsessed with things (a certain film etc). All of it is almost unnoticeable, friends think I'm mad (even husband thinks it falls within typical kid). But I think she masks well, especially at school. If we get her assessed, is she bound to be given a label? I've heard that nobody gets assessed and is told they're neurotypical. I just want her to get the support she needs to thrive, but I'm worried I'm seeing something that isn't there and she'll be given a label regardless.
Are the assessments pretty accurate?

Makes sense.

However a word of warning - DC2's school threw me off the scent. At that point, I didn't know what was wrong. They gave DC2 various screener tests for ADHD, autism, OCD etc. They all came back as negative. A few years later DC2 was found to be dyslexic and then was diagnosed with ADHD.

There are a couple of good websites that explain Right to Choose and the need for GP agreement on Shared Care etc. https://www.adhdadult.uk/diagnosis/ https://adhduk.co.uk/right-to-choose/

If school/college will not provide supporting evidence then you will be better off saving your money until she turns 18.

Avoid ADHD360. Whatever company you choose, check the person doing the assessment has a relevant qualification.

@ShiftySquirrelmy dd has just been diagnosed privately and CAMHS accepted diagnosis within 2 weeks and we will get meds from them. Their criteria was must meet NICE guidelines.

Most of the RTC providers aren't regionally based as such, they are all across England but provide assessment remotely / online (mine was done by Harrow Health who are based in the South, whereas I'm in the NE of England.

This was earlier this year and my Autism assessment via a different RTC provider in 2022 was also remote / online.

It's also worth bearing in mind that née providers come online all the time, so worth checking every couple of weeks. (I just kept the ADHD.co.uk page open on my phone tabs and refreshed till something came up)

It’s actually a severe disadvantage to have undiagnosed ADHD. It is much better for your overall health to be diagnosed and treated: I also have ADHD and ME/CFS. ME/CFS is a serious chronic health condition and it has made me too unwell to work. My ADHD psychiatrist tells me that the stress of living with undiagnosed and untreated ADHD was likely a contributing factor to me developing. ADHD.

For school children, their educational outcomes are unlikely to be as good without medication and support: I know you don’t need a diagnosis for support but with my experience of DC2 witb undiagnosed ADHD, the school really tried to help but because nobody knew it was ADHD, they didn’t know what support was needed. Even if we had guessed it was ADHD, each person’s support needs are so individual, we probably would not have worked them out.

It may seem like many or most people could be diagnosed with ADHD because everyone has some of the traits some of the time. But most people will not have them to the extent that they negatively impacting their lives enough to reach the threshold for diagnosis.

Having some traits is not the same as a diagnosable disorder, in the same way that sometimes being sad is not going to give anyone a diagnosis of depression.

So, it's not that most people have ADHD, it is that most people can relate to the symptoms. The difference is that for those of us who get a diagnosis, those traits are intense, impairing and persistent enough to be medically recognised.

My daughter was on the waiting list for her ADHD assessment for 5years and 5months through the NHS. Once we actually got to the assessment, It was really in depth. By this point we had had several assessments by an OT, private Dyslexia screening and diagnosis, speech and language, a specialist school, 2 years of intensive psychology, an EHCP. We have her feedback appointment on Monday to see if she will get a diagnosis of ADHD and whether she fits the criteria for an Autism assessment.

I just want to add, as ive seen it mentioned here. You can get DLA and an EHCP for a child without a diagnosis and a diagnosis does not mean you automatically get DLA or an EHCP.

There are other steps before going down assessments/diagnosis/EHCP etc

I don't anything about right to choose.

However, if you go private, your GP may agree to prescribe the medication. Mine did and so did DC2's. It's called a 'shared care agreement'.

I know many GPs won't agree to shared care or perhaps will only agree to it with certain doctors. For example my ADHD psychiatrist used to be in charge of adult ADHD assessments for our local NHS mental health trust. She is also generally very well known in the field and very well respected.

If your GP won't agree to shared care, the other option is, after your private diagnosis and starting medication, is to ask your GP to refer you to the NHS mental health team and they can review your diagnosis and medication. Apparently in my area the wait for that is 18 months. After that review, the GP would then be able to prescribe.

You might want to find out more from your GP surgery before committing yourself.

You can apply for DLA, but completing and submitting an application doesn't mean you'll get it. An ADHD diagnosis isn't a quick route to getting DLA or extra time for exams.

Accommodations for exams are usually made when the need is evidenced/backed up by a medical report.

Thank you @bizzare that's really helpful. There's an overwhelming number of websites so it's good to some recommended. I've approached secondary school in yr 8 and they weren't helpful, but DD says a couple of her teachers would be supportive

Thank you too @whatohwhattodo DD is struggling with her mental health at the moment too. I hope things improve for your DD soon.

Thanks too @dizzydizzydizzy we're off to the GP this week to discuss things and the best options going forward.

This 100x - DS' fiance got their diagnosis at the same age, andd it made a huge difference in the amount of support they got at uni, enabling them to complete their degree. It's a pretty major thing - people with ADHD are far more likely to become involved with the criminal justice system, for starters. Getting the support in can prevent all that.

I think you have to be very naive to not think that there are bound to be some unscrupulous private practices who will absolutely tell the customer exactly what the customer wants to hear.

The whole point of RTC is that you can go anywhere in the country as there is no “our area” about it. You have the right to choose any provider whether it’s 600 miles away or next door.

We signed up for one RTC because it had a shorter (e.g. 6 month-ish) list. Except demand mushroomed and we've now been waiting for 8 months.

We got lucky with the private assessment and were offered a last minute cancellation within 2 months, because otherwise even privately we were looking at 8 months wait.

If you go through the NHS or a reputable private practice it should be pretty accurate, I believe there are some dodgy private places that don't do thorough assessments but if you look into it you should be able to find and avoid those.

You'll get a lot of responses saying of course get her assessed and there is no downside, but I agree with @pengwig . And I would say, with your gut feeling - something is telling you to be cautious or you would have booked this already.

If you ask "I think my kid has this specific medical condition, should I ask a doctor to confirm it?" the answer is "duh, yes, they are the experts, do the test and you'll get a yes or no for sure".

If you ask "my child seems to be quite daydreamy and falls behind in her homework, how can I support her through the transition to senior school?" there are a wider range of possible answers, and some of them are actively critical of sending your child down a medicalisation pathway and the iatrogenic risks associated with that.

I would challenge yourself to spend a weekend consciously thinking about alternative models that might explain what you are seeing. I'm not suggesting any of these but just so you see how widely you should consider, it's not just "maybe it's ASD not ADHD": she is on her phone too much; she is retreating due to being abused and you haven't realised; that's just her personality and it's charming, annoying but not harmful; her schedule is too busy and she is losing track; her friend just got an ADHD DX and she thinks it's cool; she is starting to struggle with schoolwork but embarrassed to admit it...

I'd also read something like The Anxious Generation - not specifically about ADHD but it explains more about why you might want to avoid leaping to a medicalised answer.

This makes a lot of sense.

Life experience unfortunately. My autistic son has been down the EHCP route. He was diagnosed at 4 y old when starting reception and has had a 1:1 ever since. Had to quit mainstream because of learning disabilities. Will probably never be independent and will rely on special structures for work.

I have met many parents claiming disability based on a diagnosis but no effect on their home life/school due to said disability. Some have even showed me the internet ressource where there you are guided what to say in order to obtain dla.

As a mother of a disabled son who is struggling with everything every day I am utterly dusgusted by those using the system with their bought diagnosis. Not correct versus tax payer and it means people might be suspicious of those of us who are having a hard time every single day because of the disabilities of our children.

Has anyone in your family been diagnosed with ADHD?

Many of us here who have been diagnosed have said what the advantages of an ADHD diagnosis are and also what the disadvantages of not having one are. What are the downsides? Having had diagnoses for both DC2 and myself, I can't see any but there have been massive advantages for both of us.

ADHD is a medical condition. The medication works by increasing the dopamine activity in parts of the brain that don't have enough, which in turn makes it possible to focus and not feel constantly anxious. From what I've read, if somebody is misdiagnosed as having ADHD and takes the medication, they will feel awful.

My DS had a private ADHD diagnosis as we were in desperate need due to being out of school and didn’t have the 4 years to wait for the NHS. I researched clinics thoroughly and went with one that met the NICE guidelines but that also was a ‘right to choose’ option so I knew it would be accepted by the NHS and LA. I also discussed this at length with them.

It was evident from the beginning that they followed guidelines even down to not considering seeing him until he was 6 etc and not sending the computer test out until after his birthday and so on.

The appointment was several hours and very robust plus observation scores from home and school. It was very clear cut in DS’ case (if you have eyes you know he has ADHD) but I trust the process would be as robust regardless of level of need.

I’d suggest doing similar. Happy to PM you the clinic I used if you’re in the S.E.

You could choose one of the providers that also offer RTC. You know they meet NICE guidelines then. ADHD UK have a list. You will need to pay privately for medication if you are assessed and diagnosed privately I believe.

What are her motor skills like? My dd is also Dyspraxic and that was picked up much earlier. There is alot of overlap - focus, sensory issues, processing issues and that comment you make about talking - she looked like she was taking it in but it flew over her head. I used to say she lived in a dream world.

Can I ask why ADHD360 should be avoided please? We had a really positive experience with them for an adult family member.

We recently were referred for assessment via our GP who uses one specific provider. The provider got in touch within the hour and the waiting time is 12-18 months for assessment and following that it looks to be 12-18 months for medication.

I'm actually okay with this because my DS is still young, and at the moment masks a lot at school. I suspect within that time, he may demonstrate more behaviours but I wanted to get the ball rolling knowing how long it all takes.

This is very interesting. She was hypermobile as a baby, and even at 10 doesn't enjoy physical stuff, cycling etc. Although she enjoys running (build like an athlete, she's so slim!)