ADHD Experiences - both for kids and adults

I have twin 11 year old boys. One has now been diagnosed ADHD/ODD, ASD, Tourette's, dyspraxia etc etc.

We have thought something was up for years. Lockdown he fell apart. School was useless as he is bright so not behind and he wasnt presenting at school, well not at the start anyway.

We have gone private in the end and taken on the LEA to get him the right school. So far we have spend c£20k. We have won every appeal. Certain school people are now on our side, everyone else tow's the political line and the LEA says go away..

He is going to More House School in Farnham in Sep, cant wait.

Funny enough he is the spitting image of my mother-in-law, but nicer and has remorse. My wife is similar, and is working on understanding herself, and helping others in the workplace.

TBH I could share more but I am totally worn out by it all...

Thud has ADHD diagnosis.

In hindsight he did show some signs at 4 but not many. It was only at Primary P5 that the problem really manifested itself.
Then we had to go private to get a diagnosis, methylphenidate prescription and a swap of primary schools to restart him.
Now 14 - still has issues in school (despite being on methylphenidate) and masks considerably once he's settled. Comes home exhausted from masking.
Really struggles with time-tables etc - this could be a consequence of not really being at school for several years (or if he was, being banished to the library) but is also due to working memory issues.
Thud also has an autism diagnosis. We didn't push this because I work with PhD physicists / Consultant forensic psychiatrists and they all are. School asked for this diagnosis because it helped get extra support.

One of the biggest problems we have is that Thud is very literal in his interpretations. Sent off in a P3 basketball match for protesting that the referee wasn't being fair (Thud had a very valid point), and now it kicks off if a class is being noisy and he gets singled out (why me?)

– continually starting new tasks before finishing old ones

Doesn't every one do this?

Anyway - where were we?
Oh yes.

Adrian Chiles has written about being diagnosed with ADHD in adult-hood.
Currently reading a book by Tim Howard (Everton / US goalkeeper) about life with ADHD. Should give me an insight into Thud's issues.

Anyway, Thud is amazing to work with.
Recently had issues with his second-hand clothing business as money wasn't being released in a timely-manner from his US bank account. Messages back and forth and he got the problem solved. I am going: "who you talking to?"
Give him a bit of IT kit and within minutes it's talking to every other bit of IT kit.
Thump (age 16) may be the straight-A student but it's Thud who gets the satnav to work every time.

I'm going through the slow process of being assessed as an adult. My wife pointed out that all the symptoms fit me exactly and I've had trouble with managing life as long as I remember.
I always thought everyone had a similar brain but just some how managed better then me.
It'll be interesting to see what the assessment shows.

Yes I got diagnosed with Attention Deficit disorder ( not really hyperactive ) last December at the age of 57 . I'm still not sure whether that is/was part of the cause of much difficulty in my life as I was diagnosed with generalised anxiety disorder 30 yrs ago ..along with bouts of depression .I have been unable to live a conventional life and am now paying for that with no security but tbh most jobs felt like a prison sentence and I've enjoyed much free time and many adventures despite it all. I became an alcoholic to cope with the stress of life and it actually enabled me to work better and concentrate ...also I found that I would procrastinate less and just get on with things once the mind was settled by a drink . It nearly killed me in the end after 30 yrs of increasingly heavy and chronic consumption. My brother got a scholarship to Oxford whilst I ..although able , failed many exams and just couldn't take all the information in required to get good results . I was and still do live very much in my head ...thinking , thinking,thinking.
The concentration and procrastination issues are part of anxiety and other mood disorders too so I don't really know whether the ADD diagnosis was correct but the methylphenidate I now get prescribed has helped me for sure . It took a 2.5 yr wait to get my interview on the NHS ( 2 hr video call ) and I just scraped in ..(diagnosis wise). I have always had very little stress/emotional resilience and despite being known for supposedly being a big strong tough bloke ( when younger ) I am a sensitive individual and always have been . I have also experienced feeling irritable for several decades but generally that's because I become preoccupied with overthinking everything and often anxiety so everything else including people can be the last straw on the camels back and I just have to get away from it all or become unwell. On top of that I rarely feel relaxed and often have insomnia despite exercising , meditating etc etc . I was a party animal when young with many many friends, travelled the world and tried everything... supported by the stress reliever called alcohol but nowadays am tea total and have lived quite an isolated existence for the last 20 yrs . Hope that helps . Bill

https://www.bbc.co.uk/news/business-62060542

Sorry, I've no experience of ADHD but spotted this yesterday, sounded interesting.

Finally got around to reading the "Delivered from Distraction" book. On the adult screening assessment I get 6 out of 6. Above 4 is a positive indication. Following on from that I have a referral from a GP. I'm going to explore using private medical insurance from work or self-funding for the assessment. The wait via the NHS to be assessed is apparently up to 4 years and I feel there are probably many others in greater need than me.

I'm willing to try medication initially. I feel like I need a step change to allow me to make the other required adjustments to my life, but perhaps that's not how it works 🙂

Work is actually going ok. I think my job as a software engineer actually suits me very well. Home life is pretty disorganised and my wife does way more than her fair share. My social life is none existent, including riding bikes.

I've had a referral now to a local NHS service so just waiting really. I struggle with advocating for myself so I'm really concerned I'll downplay my symptoms or fail to convey them properly to those assessing me. I've written lots of notes down but I'm also concerned that if I look like I'm referring to those a lot that it may not look genuine.

The GP was somewhat uninterested and asked why I wanted a referral for assessment, as lots of his questions were based around whether I had a full time job, whether I was struggling with money, addiction etc. I was a bit annoyed at that, because I work extremely hard every day to avoid getting into problems and surely prevention is far better than having a disaster some point when I can't manage it any more and trying to fix it all? I'm only 30, so there's plenty of time left for me to '**** it all up'.

We have been going through this with our eldest who's now in Yr 4. As posted above, the speed to obtain diagnosis through the NHS is very slow and we ended up going private (for ADHD), we're on the waiting list for an ASD diagnosis.

I've been trying to do some reading around and it certainly sounds like if a child has it, then one or both parents are also likely to have it (maybe hidden away or managed to some extent). There are variations within ADHD (attention deficit doesn't need hyperactivity for example and giirls and boys tend to display in different ways).

Recently listened to "How not to murder your ADHD kid" on audio book which I found very insightful. Written by someone who themselves was diagnosed in middle age, and really able to highlight some of the challenges and ways to work with it in a clear way.

Good luck to all identifying children with ADHD and/or ASD and supporting them; it feels like a lot more of this will come out as we learn more and can speed up diagnosis and then hopefully improve the coping mechanisms.

I have a referral for assessment as an adult. Actually, I got the referral a couple of months ago but I haven't got around to it yet because something else came up...🤣

Sent off in a P3 basketball match for protesting that the referee wasn’t being fair (Thud had a very valid point), and now it kicks off if a class is being noisy and he gets singled out (why me?)

That sounds very familiar...

Actually, I got the referral a couple of months ago but I haven’t got around to it yet because something else came up…🤣

Yup. See my pattern of posting on here, often post something then only get around to follow up posts months later. See also my DIY attempts at home.
One thing that really resonated was a question along the lines of "Do you often struggle to complete a task once the complex bits are done?". Yes! An example is Christmas Dinner, got everything cooked and ready to go... I then have to ask my wife to plate it up, just can't face it. So weird.
I once was employed as a consultant, would do measurements and assessments, hated writing the reports. In fact I started automating the process, which lead me on to thinking about software development...

Any adults awaiting NHS ADHD assessments in England should consider using Right to Choose as it will generally be much faster. Some information here though of course other providers are available. Not all GPs are aware of this specifically for ADHD so if asking to switch it is worth mentioning this info specifically. Not available for under 18s sadly.

https://psychiatry-uk.com/right-to-choose/

Also something on private assessments, I've read that you may not get funding for medication if you are assessed privately. Seems very much to depend on the health board though. I think the process is called Shared Care perhaps?

Shared Care is common to many specialist medical services, but is different to Right to Choose. Once you are stabilized on medication (privately or on the NHS) the consultant can request the GP enter a Shared Care arrangement where the GP prescribes the medication and organizes regular monitoring blood tests etc on behalf of the consultant/specialist team. The overall supervision and decisions on medication changes etc remain with the consultant team. It is then up to the GP whether they agree to do this. There are valid reasons why they might not including local rules against GPs prescribing specific drugs, lack of funding for the extra work, lack of actual supervision with previous agreements, safety concerns etc.

Our daughter has an ADHD diagnosis (and also ASD and a learning disability). Thinking back I think she received a ADHD diagnosis around 3 or 4 which I think is quite early but was probably due her being under a paediatrician for other reasons and had obvious signs. After taking part in a clinical study at around 6 years old they added Hyperkinetic disorder to her notes which I understand is often interchangeable with ADHD but is more signified by involuntary movements and extreme restlessness.

Due to her also having ASD and LD diagnosises it's not always clear which traits are caused by which condition, but up to the age of 12 she could literally not sit still. She would constantly bounce on a chair, or her legs would be constantly swinging beneath her. She would bounce around on the carpet on her knees. On her small single bed she would spend ages doing forward roll, backwards roll over and over again. When holding her hand she was constantly squirmy or jumping up and down and sometimes exhibit body tremors. She also has dyspraxia, could not focus, had difficulty following instructions and had regular defiant and disruptive behaviour. She was impulsive, headstrong and charged into every situation like a bull in a China shop . She would often have disruptive sleep and often only be asleep for 3 hours a night at most. Medication did help to an extent with the hyperactivity and sleeping.

When she hit her teens it was as if her ASD took more to the forefront and a lot of the physical aspects of the ADHD reduced, replaced with more ASD stimming behaviours. She now can be hyper focused ( to the point of obsession) about a subject but cannot focus on something which holds no interest. Unfortunately as I have said on another ASD thread on here in her teens she also started to exhibit some aggressive and self-injurous behaviours which have remained into adulthood. She still lives very much in the moment with little thought to the implications of her actions.

To try and counteract some of the more negative points I have made above, she is never boring to be around 😀. Also for a young lady with ASD she is quite sociable, has a wicked sense of humour and is definitely one of the most interesting people I know. If I could I honestly wouldn't change much about her (except for the aggressive and self-injurous behaviours).

Like many other parents our experiences with CAMHS, DoLs, Social services and special education provisions have been mixed (hopefully this will not apply to you OP). It does feel like you have to fight for everything.

Just a random 2 AM thought....as an adult, could there be any downsides to being formally diagnosed with ADHD? Insurance for various things? Visas for entry to other countries? Employment?

Op re your original post it seems like what you are currently doing (finding out more info about ADHD) is a good place to start. Having more knowledge on the subject could give you a better idea whether having ADHD is a possibility for your son or yourself.

As others have said actually getting a diagnosis at the moment is often not easy though.

If son's school has a SENCO (who also thinks ADHD could be a possibility) they may be able to help and support you with the process of trying to get him a diagnosis.

Regarding negative aspects of having a formal ADHD diagnosis from your list, I'm no expert but I am pretty sure you don't have to declare an ADHD diagnosis at job interview stage.

ADHD is classed as a disability and legally you should not be discriminated against for having it. That being said as most of us know we don't live in a perfect world. I think it's only natural (and valid) for a parent to question whether the extra support (and help managing the condition) a formal diagnosis could give outweighs any possible negative aspects like prejudice and stigma.

as an adult, could there be any downsides to being formally diagnosed with ADHD? Insurance for various things?

not sure about downsides, but my children have found that meds for other associated considtions such as anxiety and depression dont work well for some ADHD people. When they got actual ADHD meds, the difference was enormous - no need for anti-depresants etc.

So it may still be well worth getiing diagnosed evan as an adult

I've now been through assessment and have a formal diagnosis of adhd via right to choose.
I've started medication which has been really helpful.
There might be down sides with discrimination etc but for me so far the positives from treatment, understanding myself, work support have outweighed them by far.

Edit: I'm also starting to think meds for other mh conditions haven't been particularly effective in the past. I actually think a lot of what I thought was anxiety was actually hyperactivity without an outlet.

Update: After 3 sessions with a consultant psychiatrist, they've diagnosed me with ADHD. They reviewed my school reports and my wife and parents did questionnaires, plus some other bits of evidence.

I've decided to try medication, but been advised to wait until the new year due to current supply issues.

The priority now is my son. Given how subtle but also glaringly obvious in hindsight the issues highlighted in my school reports are, I want to pursue things for him. He's just started school and a few weeks ago we had our first parent's evening. His teacher appears very competent and we raised ADHD like traits as something we'd noticed at home. From the teacher's feedback, some traits are there at school too. The impact is yet to be seen though. Educationally for me the impact wasn't "seen" until A-levels.

Ideally I want someone to talk to for guidance. Maybe an assessment for him at the first opportunity is better?

Reading the OP was like looking in a mirror! The symptoms and issues are exactly the same, plus a few more.

Also in common is the fact that I was inspired to think more closely about myself after thinking about my sons (13 and 8) who both have a variety of issues with school, dyslexia, organisation, distraction, anger, impulse control and making friends.

I'd been really struggling with work and constantly fighting with my wife so in a rare burst of decisiveness, I made an appointment. I had a phone interview and was referred to a clinical psychiatrist for diagnosis and then..... I did nothing! that was last Christmas.

I think this is partly because I feel like sorting myself out before my kids is selfish, even if the sensible part of my brain can see the multiple flaws in this attitude.

I was also a bit confused because it felt to me that my symptoms were getting progressively more acute, which i didn't think should be the case for a condition that was there from the start. I have sort of come to a few conclusions about that. Firstly, I think i was able to mitigate some of the problems with frequent (often a bit excessive) exercise - rugby, running, riding etc. I spent a lot of time on my bike especially and i think this time was useful in letting my brain chill out/run wild while my body had something else to be getting on with. we moved 2 years ago and my exercise has dropped off a cliff. I think this has had a lot of inevitable negative consequences for my mental and physical health.

Secondly, a lot of the "new" problems were always there, just circumstances meant they were less of an issue eg I wasn't expected to plan childcare for half term, book a holiday or remember to get an MOT done.

One interesting change is that I used to be a prolific reader, but i can't read books any more - It's been more than 10 years since I've been able to read a book for pleasure. On the other hand, I listen to audiobooks and podcasts for about 18 hours a day. I've just started listening to the How not to kill your ADHD kid book that was recommended above. a few mins in and it's very interesting. Hopefully some useful ideas to come..

I feel like sorting myself out before my kids is selfish

Put on your own oxygen mask before attempting to help others.