Is a formal diagnosis worth it?

[Daftodil]

Hi all,

DS is 6 (in Yr2). He is hyperactive and impulsive, and school have recently suggested that I should get a referral for an ADHD assessment.

I asked the Senco what the benefit of a diagnosis was and she said "it means that we can support him better in school" then said "I mean, obviously we will support him fully anyway, we support all of our students". So if he will be "supported fully" at school anyway, is there a benefit to getting a formal diagnosis?

I have been reading lots of things from adults with ADHD and some who got a late in life diagnosis say it was a revelation and that the diagnosis was really helpful, helped explain so much etc. Those who got a diagnosis earlier in life seem to be saying that they suffered as a result of the label, had lower expectations put on them, weren't pushed as hard, told that they were "different" and behaviour/outcomes were predetermined by brain chemistry "oh, they can't help it, that's just how they are" (ie. Took away some feeling of power/control over their life/choices). So it seems those who had a diagnosis, would have preferred not to have it and those who didn't get a diagnosis wish they had!

So if you/your child has had a formal diagnosis, did it make a difference and if so, what? If you had your time over, would you do things the same or differently?

Thank you.

Medication can be life changing.

People understanding you have a neurodevelopmental order rather than are being naughtly can make for more compassion and understanding and less damage to self esteem.

I don’t have any personal experience but if your child has behaviour which is not manageable at home and if he needs medication then go for the diagnosis as without one he won't get any medication, if it's only gonna be behavioural therapy then no need because schools should put support in place without a diagnosis. I have a friend who seems to have adhd (she thinks she is unique and says this repeatedly in many conversations, impulsive, hyper verbal, zones out at times, talks excessively about herself, is very bad in two way communication as she will often cut others mid sentence and will take over the conversation), I knew there was something different about her although she does holds a good professional job and can come across as very neurotypical at times especially when a person first meets her (she is in her 30s). She haven't got any diagnosis but she herself says that she has some form of adhd. Do I think she would have benefitted from a formal diagnosis - yes I do because she fails to be in a long term relationship because of her behaviour. I myself have felt very frustrated whilst talking to her and many times avoided it. I do feel she cannot manage her emotions because of adhd and it would have helped with some kind of therapy. She says that she feels different than others and not really keen on being social but can be if situation arises.

Surely the ones who got diagnosis as children did so many years ago when there was more stigma? these days I think it can be helpful and make others much more sympathetic. You have secondary to think about too.

I can't speak for ADHD, but diagnosis of dyspraxia/dyslexia made a world of difference for both my DDs. They can say 'I have dyspraxia which means I find X hard but it helps if you do Y'. Being able to name their difficulties has empowered them.

@Samee20 if neither you or your child have ADHD, and you are using this board to describe the 'deficits' you perceive your adult friend to have, you would appear at risk of missing the point. Which is that ADHD requires reasonable adjustments as well as SEN support - the environment needs to change to become more understanding and ADHD-friendly. People's prejudices about ADHD, which causes stigma for people with ADHD, and their families, needs challenging.

You presumably wouldn't come on a board for parents of children with SEN and complain that your friend with MS, who elects not to use a wheelchair, can't walk fast enough to keep up with you, which is annoying you, and makes you avoid her?

Which isn't to say your description of her necessarily sounds like ADHD, but perhaps avoid digging a deeper hole in terms of speculating about her medical conditions on an internet forum?

OP - until the stigma reduces, this will always be a dilemma, but medication transforms the ability of lots of children to participate in education. This can avoid having their self-esteem crushed by huge amounts of negative feedback from teachers for behaviours that arise from the condition.

You may find this becomes a larger and larger issue as schooling becomes more formal and demanding of the sort of executive functioning capabilities ADHDers typically struggle with. Which may make the decision easier....

Thank you for all of your responses, I am really grateful for your thoughts.

@Samee20 DS's behaviour is mostly manageable at home - for me. He doesn't always behave well for other family members, who do think that he is naughty, and there are definitely things he does that go too far (running around in cafés or making silly noises etc). At school, his teacher has said he isn't "naughty", as in unkind to any other children, it is more that he can't stop himself talking/blurting out/getting up out of his seat.

@PassageDEnfer in all honesty, I probably am a bit worried about the stigma. He is my first, so I don't have much to compare him to, and just assumed that these are fairly normal things for a 6yo boy to do. He is summer born, so one of the youngest in his year, so maybe just isn't mature enough to sit still for 6 hours a day. I don't have any concerns about him academically. I've also been reading a lot about overdiagnosis and I worry that he is just a lively boy that might get labelled with something he doesn't have that will then stay with him for the rest of his life.

@PassageDEnfer
Re: ADHD requires reasonable adjustments as well as SEN support - the environment needs to change to become more understanding and ADHD-friendly.

Another worry is that he has adjustments throughout school life and then the real world will hit him like a ton of bricks when employers/friends/partners/strangers etc aren't as accommodating.

Another worry is that he has adjustments throughout school life and then the real world will hit him like a ton of bricks when employers/friends/partners/strangers etc aren't as accommodating.

By adulthood, having adjustments your child will by then have received a better education and qualifications than without. Also in adulthood they get to choose a career that suits them best knowing their own strengths and weaknesses.

@Daftodil - yes, over-diagnosis is a current media brouhaha, partly precipitated by the crisis in NHS capacity. Are children over-diagnosed in a GB context? Well in a UCL study this year, 3.5% of boys aged 10-16 have a diagnosis. Set this against NICE's estimated global incidence of 5%.

This does represent a significant increase, in part drive by increasing awareness of how effective ADHD meds are for 70-80% of people who take them (eg the benefits of diagnosis are becoming clearer). The bottom line though is this: to get a diagnosis there would need to be evidence of at least moderate impairment in at lest two settings. If you are confident that DC is not having adverse experiences, you could adopt a strategy of 'watchful waiting'? (But be aware that lead times for assessment and to receive medication are lengthy (measured in years)).

In terms of workplaces, major employers are typically in a very much more enlightened place than the education system (perhaps because the penalties of falling foul of equality legislation are meaningful, unlike for schools). Enlightened organisations in sectors where neurodiverse talent is actively sought, because of the unusual strengths it can bring (might include creativity, startegic thinking skills and hyperfocus), run neurodiversity network groups and offer a variety of adjustments including specialist coaching. That's obviously the progressive end of it - but differently wired brains bring great strengths as well as being challenged by the way we organise life at the moment.

There is a lot to be said for understanding why you find some things more difficult than other people, rather than remaining in the dark and feeling flaky and inadequate.

Sorry, that was typo-tastic.

I think diagnosis is important for DC understanding themselves especially as they get older.

Support and adjustments in childhood can help DC develop strategies for self regulation etc. that can help them throughout life.

@PassageDEnfer I am not speculating, I didn't even know what was adhd until my friend told me that she has some mild form of it but never diagnosed. Just to reiterate - I don't think it's a "deficit", who are to say that NT people don't have any "deficit". My friend agrees about her adhd, the same way we all agree about what we lack in. What is so wrong in accepting about what we lack in irrespective of neurotypical or not? I am sorry if my response came as negative, it was never my intention. Have i ignored any of my friends even if they have got no diagnosis- yes i have, like the way some of them have ignored me and it's all fine between me and my friends. The problem is anything we say nowadays can be criticised and without knowing people personally it's easy to criticise.

If you can get a diagnosis and medication that might help, why wouldn’t you? If it was any other part of the body than the brain, you’d just get on with it.

I have a long term health condition that has required reasonable adjustments and intense spells off work (from a week to four months) - without a diagnosis my life would be far more difficult to negotiate.

I have a child with ADHD - it was pretty obvious really from when she was about 4 or 5.

We held off getting a Dx until she was 14.

Reasons for this were a) she had growth issues and the medication may cause similar problems b) worry about labelling her - and also convincing myself that these were all just normal but slightly bouncy child (yeah right) c) when I really had got to the point where I was talking to school about it was when Covid kicked in... I then had to wait while she settled into secondary and some of the teachers knew her well enough that someone could complete all the forms and d) my executive function is not the best and getting organised on it all had to be treated like a military operation!

For DD it has been completely life-changing having the formal Dx. She was at an age where she has a lot of insight into it and it helps her see why she is the way she is at times. Medication has been amazing for her and for those of us who have to live with her (her bestie at school is a massive fan of medicated DD!)

Knowing what I know now, I wish we'd just done it earlier. The meds do seem to rewire their brains to a certain extent - unmedicated days are starting to be not too massively dissimilar to medicated days, and my relationship with her is so much better.

If you wouldn't medicate then probably a lot less point in getting a Dx though. In my experience (DD also has severe dyslexia) schools may say they do a lot, but the reality doesn't live up to that. Bar getting Ed Psych reports done, every single bit of help DD has had has been initiated by me and generally provided by me. Secondary don't stand in my way, and they do all the exam stuff, but there's no real help out there.

Thank you all for sharing your experiences. I really am very grateful and it is truly helpful to hear your perspectives.