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?

Yes I don't really know the differences between the conditions, so need an assessment that will consider everything.

I'd like to watch this. Do you remember the name?

@Hotdoughnutbefore I paid for the full assesment I paid £300 for a general mental health assessment. It covered alot of the same forms as the ASHD / ASD assessments and essentially flagged if she thought they were a possibility. If you are anywhere south London / Surrey borders happy to recomend the lady I used (same one for mini and full assesment)

You can claim DLA. And she can get extra time on exams.

Easy to get a diagnosis privately; not NHS so don't care about whether it's accurate or not- customer is King.

Do you have ANY idea how offensive this is to the many families who have decided to make the financial sacrifices needed to pay privately for a diagnosis? Both NHS and private are proper assessments. Which lead to either a formal diagnosis, or no diagnosis.

Awww that sounds like you have really gone through the mill. I hope things improve a lot soon.

No I don't, this is why I'm posting, I'm at the start of the journey. I didn't mean to offend, but from some posts above, I think it's clear not all clinics/assessors are equivalent, and there may be some just looking for your money.

Look up Right To Choose, lots of NHS options on there...just make sure you choose one that will cover cost of any meds if you go down meds route.

Thank you, I'm guessing waiting list will be crazy so we'll likely go private. Would you advise a specific website for private? We're in Buckinghamshire.

Definitely get her assessed. My DS has just been assessed after literally years of me trying to work out what was going on and school simply saying he was ‘not concentrating’ in a critical way. It’s a diagnosis that has explained so much, DS owns it and is comfortable with it and his medication has made an enormous difference to his life and his school outcomes. Now it’s been done I feel bad it was delayed for so long, due to reluctance to face this from other family members. He was battling to function in school, against a tide I think. I see other relatives who likely have it (who have been battling with chaos all their lives, with all the stress and failure that that entails) and yet refuse to even acknowledge the likelihood of having it. Should DS go to uni, lots of support will kick in…albeit in our current school systems there is less provision available.

You need to make sure you engage an assessor who knows what they are doing.

DD dual asd/adhd assessment said she had signs of attention difficulties but not enough to reach adhd criteria.

Speak to the school though, you need to get them to fill in a report so it makes sense to talk to them about your concerns first.

A diagnosis would help access provisions for exams, it might explain a lot to her, acknowledging her struggle.
It's worth investigating before she is a teenager.

I have an ADHD diagnosis and my feeling is that many, if not most people could be diagnosed with some degree of ADHD. It is more like a spread of traits that many people have some of and will find debilitating to some degree. I also think (know) that many factors like tech, lifestyle, diet etc play a role and can be the difference between functioning and non functioning even with quite severe ADHD. I have over the years tried various medications but due to adverse effects am now treating my ADHD with other interventions.

I also know its a highly emotive subject, some people really cling to their diagnosis, find it very validating and I do actually understand that as I was there myself for longer than I care to remember. I don't know in many ways a diagnosis can be really helpful and I am sure meds can be useful in the short term but I've seen a lot of negative downsides as well in myself and others.

Really interesting perspective, thank you. I was worried that a diagnosis could be a disadvantage in some ways. It's such a hard decision.

Definitely get a clinical evaluation.

I’m going to be honest and say it’s a long line for a NHS evaluation so I’d start immediately if that’s your route.

Current waiting times are years and you really need it for exam exemptions

You can apply for DLA regardless of any diagnosis as it’s based on a care need. However, you need robust medical evidence to back it up. Exactly the same for additional time in exams although that is much harder as you typically have to go down an EHCP route which means an LA based educational psychologist comes in to assess and they usually want to do everything possible to stop the plan being granted in the first place.

I think you need to step away from some of the more malicious sources of media that you’ve been reading and properly educate yourself.

Everyone I know paid around 1000-1200. No one I know in Surrey paid 1700 in Surrey or London

I’ve known people who went for an assessment and were told they didn’t reach the threshold. I’ve known someone told they were borderline and could try medication. I’ve known someone whose dc failed to meet the threshold for adhd but were advised to go for an ASD assessment which turned out to be what she was
so no. They don’t give positive results to everyone

I think it depends on who does the assessment.

Ours was 3 different assessments/meetings. As well as a range of questionnaires to be filled in by parents (they literally took about 2 hours in total) as well as online tests for the child. Which were a nightmare, trying to keep an ADHD child online doing testing, when they can't focus anyway! I was pulling my hair out by the end.

Fortunately, the report was a very detailed one and describes everything we see in DC.

I've heard doubt cast on online tests but having no experience of them, I wouldn't like to pass judgement.

We paid £1800 but the person who did it privately is a lead NHS consultant and honestly he very very clearly knew his stuff . I've seen other testing places charge much more.

Paid a lot of money for our child’s private ASD assessment (proper multi disciplinary panel, ADOS, gold standard). Didn’t get diagnosed.

In our area, the waiting list for any RTC providers is currently at a year and a half.

@Hotdoughnut I only have experience of adult assessment myself (I don't have children), but have watched several friends take their children through the process when it's become apparent they are struggling.

I am always amazed that people are surprised there's a high level of diagnosis from assessment - you wouldn't consider or go for an assessment for something you didn't think you / your child had, surely?!

From someone who did well at school but struggled with other things and was eventually assessed and diagnosed at 35 - please get DD assessed, and if you find strategies that help in the meantime, you can use them even if she doesn't meet the threshold for formal diagnosis.

Can I ask people who know, how do you go about finding someone reputable from the Right to Choose pathway?

My DD is just 16 and has fallen apart somewhat post GCSEs. There's many long term signs of ASD or ADHD or possibly something else (she already has an EP diagnosis of dyslexia).

My DM has offered to pay to go privately, but from what I understand (or misunderstand?) if diagnosed privately with ADHD and we go down the medication route we'd have to fund that ourselves permanently. (We're in Suffolk.)

Ultimately the goal is to help her, whatever the cause is so any answers or pointers would be useful.

Sorry for the essay but I have just been through this with my eldest.

Speak to the school first. If they don't agree they think she has ADHD then she won't get a diagnosis so you are basically wasting your money. I paid for a full assessment for my son and the psychologist said he has all the signs of ADHD, Qb test shows he is constantly fidgeting etc but because the school won't co-operate (he is no more badly behaved than lots of other boys apparently!) he can't give a diagnosis.

If you do go for a private ADHD assessment - look at who is doing the assessment. Some of the private ADHD assessment services are very much done on the cheap and use the loophole in the NICE criteria which says something like any suitably experienced medical professional can assess for ADHD. As a result, companies like ADHD360 employ pharmacists to do assessments. Also think about how the experience will be for your child - we went for a local psychologist, and it turned out he has ADHD himself and he was very understanding. Being able to meet someone in person was very beneficial over it being online.

In response to one of the comments above - an ADHD diagnosis does not get you DLA or extra time in exams for your child. Both require evidence of need meeting set criteria, not a diagnosis. My son has reports from 2 qualified professionals recommending extra time but may well not get it for GCSEs.

If you want an assessment I would start with a general EP assessment and see what they recommend from there. That should be about £500 and it's easy to check Educational Psychologists are properly qualified with the HCPC. Similarly if you go for an ADHD assessment I would go for a qualified psychologist who has lots of relevant experience including in the NHS.