To not go down the ADHD path?

[Anonnymouse85]

Firstly, I 100% believe ADHD is real and have a family member with the condition as well as friends.

DS, 11, says he is finding it hard to concentrate since starting secondary school. He feels like he fidgets a lot. He’s like this at home - often when watching TV he’s shifting all over the sofa (but not always) and when he’s read to at night, he always likes to fiddle with a toy.

School allows him to have a quiet fidget toy in lessons.

Other that that, he’s doing well at school, I’ve never had any indication from any teacher that he might have ADHD - however he asked me the other night if he thinks he might have it. It’s worrying him that he feels he can’t concentrate - but his work doesn’t seem to be suffering.

I really didn’t want to dismiss his concern but I just tried to reassure him that no, I don’t think he does and that different people focus in different ways - some need to sit still and quietly, some find their brain is more focused when their body is doing something. Plus, everyone finds some lessons more interesting than others (I remember falling asleep in science lessons because I was so bored!!)

But a little part of me is asking “what if he does have it and by not acknowledging it, he won’t get the support he needs?”

At the same time, I just feel like people can be too keen to label behaviours - can this not just be a personality trait of his, rather than something that needs to be diagnosed??

I think I would start by mentioning it to school and asking them to let you know if they observe any signs of ADHD.
DD was in year 3 when we did this. Initially the teacher said there weren't any signs but quickly came back and said that once they actively considered it the signs were pretty clear. She was diagnosed in year 5.
I think in childhood/adolescence the schools view carries a lot of weight so if they don't see it he is unlikely to get a diagnosis.
If school can see signs then I think being referred for assessment is probably a good idea. In many areas the waiting list in years and you can withdraw at any point if you decide its not warranted. Whereas if you decide not 3 years he does need assessing and hes then at the back of the list then the wait may cause him issues.

Everyone giving advice here should declare an interest, if they themselves or their DC has a diagnosis. There is a danger of confirmation bias. Also with any such diagnosis there is a period of euphoria as you feel it solves all issues. There is now a massive ADHD industry. I know 2 people in the last couple of weeks who's counsellors suggested they have it. Honestly, knowing them i am very doubtful, but they're both on a high as being 'seen' etc. Another friend runs a counselling agency and says almost everyone they see now thinks they have ADHD and that if they go to the diagnostic agencies they'll most likely pass as almost everyone does. I've done the online test myself and I fit it too!! No thanks though. It's not benign. Apart from a very small group who genuinely can't function otherwise, I think it needlessly pathologises, and in many cases drugs people. Its not benign. Apart from the long term impact of the drugs, many employers are now pushing back and putting restrictions on roles people that adhd can do. And once its on your record you have to declare it.

It's not actually complicated to recognise ADHD, although you do need a psychiatrist to sign it off.

The diagnostic criteria are quite straightforward and I think you'll know by reading it whether this rings true for your son or not. If you're reading it and thinking, "That's not ADHD, it's just normal, I do that too!" then maybe look at booking two appointments.

https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t3/

Those people who are saying that they've got a diagnosis for their child but that school said there were no problems and didn't contribute towards the assessment, how did you get the diagnosis?
Did you not need any evidence in two settings?
Did you go via right to choose because you don't need school that way?
I'd be interested to know

I actually find it worrying so many posters are aggressively insisting that he has to be diagnosed on the basis of this. It could literally be any child at all!

We had literally just had a teachers’ evening where no concerns were raised by teacher who told a different tale to the specialist ADHD nurse that visited DS2 in class at age 7. She concluded DS2 was definitely ADHD and could also be ASD (later diagnosed with both) and the same teacher expressed concerns and gave examples. Totally destroyed my trust in teachers to be honest with parents.

Might be worth talking to school about if they'll do adaptations like sitting exams in a quieter room anyway. DD1 is not diagnosed (she's the Tigger on Red Bull child mentioned) but school have noticed she does better in tests in a less distraction filled environment (to be fair DD1 could chat in an empty room) and are going to put her in a quieter environment for GCSEs etc as a matter of course - helps a bit that she's one of the academically strong ones in the year so they're out to maximise their own exam results!

DD2 had support for SATs (again, very bright but inattentive ADHD diagnosed) to just reorient her focus on the paper when she got distracted by a molecule of air.

Yes we rather found this. I've heard some people say schools are cautious of raising it with parents because they worry about the reaction.

But even after the school mentioned some issues with DS's inattention and I mentioned ADHD and the fact I've got an ADHD diagnosis myself they still didn't bite. So I'm not sure what the reluctance was.

It was only after we said we were getting a private assessment and sent them the forms we got a full picture from them (DS ended up being diagnosed with ADHD and ASD).

My GP has agreed to shared care with my private provider which meant I did not have to pay for private prescriptions for very long. I would recommend that the OP contacts the GP about which private providers they are happy to work with - if any. Not all GPs will do this.

The other alternative is to go private for diagnosis and sorting out medication and then ask the GP for an NHS review. At that point, the NHS will hopefully take on the care. When my GP told me about this about 9 months ago, she said the waiting time was around 18 months.

Ignore posters saying that everyone who goes for assessment gets a diagnosis. That is total nonsense. My eldest was referred for assessment when he was 11 and, following several meetings, questionnaires and a QB test, was said not to have it. So it's not a given. The consultant did, however, say that she felt he may be autistic. So he was added to the very very long waiting list. Almost five years later, he was finally diagnosed with ASD. I have always strongly believed, however, that he has inattentive ADHD, despite the decision of the ADHD Clinic, but I wasn't going to go back down that road because, in the end, I'm not an expert. He has been attending a CAMHS counsellor for various issues and, a few weeks ago, she suggested that he be reassessed for ADHD, as she believed that much of what he talked about in therapy was strongly suggestive of ADHD. Several of DP's family are diagnosed. His brother was diagnosed back in the very early days of the condition being more widely talked about - mid to late nineties.

My son was happy in primary school. He had very obvious difficulties with disorganisation, inattention and social interactions, but academically he was doing exceptionally well and was happy to go to school. That all changed after a couple of years in secondary school when all the wheels fell off in a very spectacular manner. He more or less shut down. He struggled with just about everything school related. He spent some of the most important years of his schooling in crisis. Had he been diagnosed with ASD, and possibly ADHD, sooner, he could have had the help he so obviously needed. To his secondary school's credit, they recognised that there were problems and, with some prompting from me, gave him as much support as possible with regard to exams etc. So, I would say that if there is any real prospect of your child having ADHD, have him assessed. Going by my son's experience, I would say that inattentive ADHD is harder to recognise than hyperactive ADHD or the two combined, so it can be missed, particularly in the younger years. If he doesn't have it, you haven't lost anything. If he does, it could save a lot of heartache in the future.

I'm interested in what you mean 'once it's on your record you have to declare it' - to whom? Employers can't force you to (unless maybe the army or something like that).

I did worry about the label for my son but it's been more a help than hindrance tbh.

I don't think you can fake a diagnosis, it's pretty complex process it's not just a tick list of symptoms.

However, I do get your point about confirmation bias. Some parents are very invested in 'getting a diagnosis' and I wonder how the people doing the assessment can control for this.

I suspected my daughter had adhd at about 8. She got screen but didn’t meet threshold. She started struggling in Y8 and finally got diagnosis in Y10. It impacted by puberty / hormones so tbh if there is a chance it is there I would get the diagnosis process kicked off - if you go through CAMHS it could be a long wait. Don’t be like me who finally managed to get the school to listen in Y9 and then had to pay privately to have any hope of a diagnosis and support to allow her to have any hope of staying in school long enough to get gcse’s

What are you talking about?

Here is the recent independent nhs taskforce findings re adhd.

www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-1/

You’ll notice how under diagnosed it is in this country, the detrimental impact it has on life and how important early diagnosis is.

Re meds - what long term impact?
Long-term use of ADHD medication is generally safe and effective for managing symptoms, with research indicating no major negative health impacts over decades of use
. While side effects like reduced appetite and minor, temporary growth delays in children can occur, they often subside, and children typically catch up in height.
Child Mind Institute +3
Key Long-Term Effects and Considerations:

• Brain Adaptation & Function: Studies suggest that, while treated, the brain may adapt, for example, by increasing dopamine transporter (DAT) levels, which helps manage neurotransmitter levels
• .
• Reduced Long-Term Risks: Long-term treatment is linked to lower risks of substance abuse, traffic accidents, suicide, and criminality, and may reduce the risk of dementia later in life.
• Brain Structure: Some research suggests that long-term stimulant treatment in children may help normalize structural differences in the brain associated with ADHD.
• Growth & Development: Although stimulant medications may slightly impact appetite and growth initially, most children catch up in height, and long-term, their growth is not significantly affected.
• Effectiveness: Medications may feel less effective over time due to increasing life demands rather than the medication "stopping" working, often necessitating holistic management.
• Cardiovascular Safety: Studies have found no, or limited, significant long-term negative effects on heart rate or blood pressure, but regular monitoring by a doctor is advised.
• King's College London +8

Medication reduces the substance abuse and suicide attempts that can be common with adhd something I have experienced with my children which I wouldn’t wish on anybody.

Employers are not pushing back on roles people with adhd can do- that’s illegal.

I was ok in school. A bit distracted and distracting but ok… high achieving kid. As an adult the wheels fell off and god I wish I already had a better understanding of what and why and my diagnosis and easier access to meds. Having to deal with my own stuff on top of my kid failing apart and needing assessments and forms filled than I can’t manage to focus on because I’m seriously struggling is horrible. I’m getting my kids assessed so it’s done for them, tying to set them up for later incase they need it.

Interested to read this OP.

My DD who is 11 and in Y7 has always been fidgety. Struggles to sit through a film. Likes lots of sensory input. Always wants to be moving, or eating, or have a screen on in the background.

However she's always managed fine at school. She was a bit scatty when she was younger about leaving stuff behind etc, but is now pretty organised.

It has occurred to me on occasion that she may have ADHD traits. However it could also be part of the spectrum of being a normal kid. I'm fairly reluctant to seek any kind of diagnosis if it isn't causing her an issue, which it isn't at the moment. I do recognise that things can go downhill at secondary and if that happened we may have to rethink.

Interestingly my other DD is completely different but I always thought she might have some mild ASD traits (but not ADHD) but again she is managing fine at school and socially.

I do also think there has been an increase in ADHD and ASD diagnoses. So I feel like the threshold for diagnosis must have lowered somewhat. I know I'll be shot down for this! But I do feel I don't really want to seek a diagnosis or label unless it's actually causing an issue.

I just wanted to say I see where you are coming from OP.

I also agree with the point about confirmation bias - if you've had a kid who has really struggled and had to wait ages for diagnosis then you're bound to be in favour of early testing, and you're perhaps more likely to post on here

I'm not saying don't go for testing. Just saying I sympathise with the dilemma!

The fact is if my kids had been diagnosed earlier we’d have avoided the serious MH struggles they experienced, the damage done to their education and many lost years.

There is a reason the NHS taskforce says early diagnosis important.

@halfpasttenas I mentioned elsewhere on thread my daughter has just been diagnosed in her teens. I have a friend who has spent years telling me how she identifies with my daughter, just like her, understands her struggles. This was way before it became a real likelihood for my daughter.

she has just been diagnosed at 50, peri menopause played havoc with her coping mechanisms.

its always been there but she just assumed it was ‘her’

Thank you!

@Anonnymouse85 It might be worth getting DS’s eyesight and hearing checked just in case he’s having trouble seeing or hearing.

I would get him assessed.

I was this kid. Clear signs of ADHD that were not acknowledged because I did well academically. Trust me, it may not look like it but he will be suffering academically and in so many other ways. If you have a high IQ then it is possible to still be achieving highly academically in comparison to others but not be meeting your own full potential i.e underachieving in comparison to what you are capable of.

In these cases, the fall-out of a missed diagnosis is recognisable in later life. Once the external structures of school and parental oversight fall away and you are left without the skills to organise or motivate yourself. The impulsivity, emotional regulation self-esteem and executive function difficulties those with ADHD face do not disappear with high academic achievement. They need support in in the correct way (which entails getting an accurate diagnosis), otherwise these issues may be misdiagnosed as depression or anxiety an wrongly treated.

It’s also worth bearing in mind that the symptoms of ADHD can mimic those of other conditions (e.g bipolar, bpd, anxiety, hyperthyroidism) and also be comorbid with other conditions (certain eye muscle disorders, or auditory processing disorder, for example). A good ADHD assessment will attempt to rule out other causes of your son’s issues and also pick up on any additional difficulties that may not be immediately obvious.

I wouldn't listen to ANYONE who says ADHD isn't real