Are we missing something by not seeking a diagnosis?

[justneedtogetstarted]

I suspect that my son 11 and myself both have ADHD. Neither of us are diagnosed. The school have not flagged any issues beyond low level comments such as this one in his year 6 report: 'must not let himself be distracted easily and will need to remain focused on the task at hand'. He is very intelligent and we work with him at home, so his sats results were excellent but I don't believe his day to day work reflects his ability.

Since he's started secondary, I continue to see issues, like he is unable to leave the house on time, despite a written timetable (detailed down to 10 min blocks), getting up 50 mins before he needs to leave he house (no morning shower) and regular reminders and nagging.

Yesterday he mentioned that he sometimes gets a bit left behind in lessons because his mind starts to wander involuntarily when he's a bit bored and then he misses instructions/dictation etc. He talks of a 'noisy mind' and seems to see almost at whole movies in his head.

I wonder if we are doing him a disservice by not seeking an adhd referral (or mentioning my suspicions) but the primary school never suggested this and his academic performance is good. I just worry that he will not achieve his potential / be happy. Any thoughts, apologies for the essay?

This might resonate. My son says his mind off meds is like 100 x tv screens all playing something different at the same time so it’s impossible to focus on any one of them. On meds he says more/most of them tune to the same channel so there are fewer distracting thoughts.

DS1 (11 in a couple of months) takes ADHD meds at school and is really focused. They’ve basically changed his life. He struggled so much before his diagnosis.

Thank you. How did you seek diagnosis and are there any downsides to one? Do you think he had adhd significantly enough to warrant medication that the school would have picked it up?

Yes, massively. Medication for ADHD can be life-changing. You are mad to deny him that chance. If you can afford it ask for an NHS referral and get going privately while you're waiting.

and no, schools often don't notice

Thank you. The screen thing is not something that I've seen in lists of symptoms for adhd but my son reports this, making up and watching whole movies in his head, by the way he describes, he can really see them. There is also a lot of humming and random words being repeated.

@justneedtogetstarted

We paid psychiatryUK to assess him, because of the waiting list. School were always flagging up that he was injuring himself by falling off chairs, or shouting out, or experiencing emotional overwhelm. He has a diagnosis of moderate combined type ADHD, and a shared care agreement meaning meds are free on NHS.

It’s not movies he’s seeing, it’s a metaphor for how his thoughts behave

I agree it is worth seeking a referral but good luck getting the school to refer him, I tried for a year to get the school to refer my 13 yr old daughter and they wouldn't, because they didn't see enough issues so their 'panel' would refuse a referral. And the GP wants the school's backing. And then there's a two year waiting list. I keep thinking about a private assessment but the recent bad press about ADHD 360 is putting me off.

My ds has gotten to 15 without a diagnosis. We seriously missed any signs. ASD obviously now. He says he would feel mentally better if he knew why/what explains the way he is.

The main issue is that it can take a while to get referred etc so if you wait until there are problems, then you have to wait over a year for assessment and medication etc then he's essentially lost a year of schooling.

OTOH, they won't diagnose if it's not actually causing any problems, so it might be a bit of a catch 22.

I know that for me, everything went well at school until the GCSE stage where we started having to do coursework over several weeks etc. That I really struggled with, and it all went downhill from there really. I did OK in my GCSEs, but I'd been doing brilliantly/top marks up until then and suddenly it was all Bs and Cs and then I never finished anything I did post 16, and have had a string of student type jobs and taken years out to bring up DC (which is lovely, but...). All the teachers at school would say glowing things about my "potential" and it makes me feel such a failure that I never lived up to any of it. Even more frustrating is that I think I could do really well if I just picked a direction and stuck with it but I can't even seem to do that!

Thank you for your comments, food for thought. For those with a child adhd do the symptoms I've describe sound pretty typical/sound familiar?

yes, absolutely

100%

I promise things will improve with medication.

I can't take meds because of my blood pressure, but just having a diagnosis was life-changing fir me. I was an extremely high achiever at school and university, but the effort involved, and the feeling of being constantly on the brink of fucking everything up did some serious damage to my mental health. And after university, I struggled with work, and have spent most of my working life in minimum-wage jobs. I've felt like a terrible, incompetent failure and let-down. A diagnosis gave me back my confidence and self-esteem and allowed me to do things in a way that worked with my brain, and to talk to employers about how some things that looked easy were very difficult for me, but that on the other hand I could easily do lots of things that other people found hard and started working in ways that let me be really good at my job. I'm never going to earn the 6 figure salary that my graduate CV was headed for, but I think that dying in poverty is now avoidable.

My DS 13 was diagnosed privately in July and is now on meds. Last term most of his teachers were commenting on his inability to stay focused and he was losing/forgetting things on a regular basis. A recent update from school indicates that he's much more focused and attentive to his work.

GP was reluctant to refer to CAMHS as he felt it was something school should do, school said GP should do it as it's a medical issue. After the GP was sent a copy of Psychiatry UKs assessment report he finally made the referral to CAMHS. Just a two year wait now!