To ask about your child's ADHD diagnosis?

[TwoGrubbySlippers]

Can I ask those of you who have got an ADHD diagnosis for your children what the process was (I'm based in the South if that makes a difference). I've heard getting a diagnosis on the NHS is virtually impossible now, and if you do make it on the waitlist it can take years. I'm wondering about going private, and how the whole process works for children, but would appreciate some first hand feedback from parents who have had a diagnosis - private or via the NHS. Info on wait times, support, medication options and costs (if you chose to go the medicated route), and info on how to help my children if you chose not to medicate.

My son has learned how to mask very well in school. He's generally a good student, so polite and loves to engage teachers in conversation. He's helpful and kind. But at home is a whole other story. He basically loses his shit after masking the entire day and just loses all control. Bouncing off the walls, not listening, can't focus, very late getting to bed. I have tried to get my son a diagnosis on the NHS before but was told that I need to engage with the school and they need to refer him for a diagnosis. I asked the SEN teacher when he was in primary school about my son and what her thoughts were on him having ADHD (I did not disclose I had ADHD). She was quite surprised at my suggestion he may have ADHD but said she'd speak to some of his teachers. She got back to me a week or so later saying non of his teachers had any concerns. So I left it at that thinking it was all on my head. But things at home are getting worse....

A bit of a back story: I have ADHD. Diagnosed privately, I saved up my money in order to afford the £1k diagnosis appointment, and a further £750ish to cover the private prescriptions and medication reviews as well as the letter turning me over to my GP for shared care.

I am 100% certain my nearly 12yr son has ADHD (I also think he may have ASD). And most likely my very hyperactive motormouth yr 1 daughter (so far only suspect ADHD with her). They are both constantly bouncing off the walls, struggle to concentrate on homework and tasks they find uninteresting no matter how many times we nag them. The only time they are quiet is when they are either zoned out in front of the TV or playing video games (simulator type games that allow him to hyper focus on things that are really interesting to him).

They are both very bright and lovely children. When they want to be.... 🫠

Here's one of the main issues and the biggest barrier for me getting a diagnosis for them both. My husband does not believe in ADHD. He refuses to believe it's hereditary and refuses to accept that our children most likely have it. After my own diagnosis I realised my father also most certainly has it (we discussed it and he is also certain he has it too). My brother was also diagnosed in university but didn't tell anyone (including my parents). I only found out when I suggested he may want to look into a diagnosis for himself after I had mine.

Any mention from me about getting my son a diagnosis results in a barrage of verbal abuse from him saying how I know nothing, how I'm just looking for a label and how everyone and everything these days just wants a label to make them feel special. He's constantly yelling / getting frustrated at my son for not being motivated, for procrastinating, for getting distracted, for being anxious, for being loud, for saying / doing things without thinking first. All of the classic ADHD signs. Yet he refuses to believe it and has not let me push forward for an ADHD diagnosis.

I watched a great documentary the other day on children living with ADHD and how it affects them and their families. It has a load of very famous people - astronauts, entrepreneurs, sports stars, musicians. Smart successful people. I suggested he watch it to see that an ADHD diagnosis doesn't mean the end of the world for our children. But like always he blew up at me and started yelling saying that the documentary was "propaganda" 🙄

So I've decided enough is enough and I'm going to pursue a diagnosis (5th times a charm I hope!) for my son. But would like to know what the process looks like these days - especially since he is now in secondary school. I don't know how teachers that well. And I need to try and keep this a secret from my husband. If private is the best option for me, I'm going to need to start saving again because my husband will not help fund a private diagnosis. And I don't have private medical.

If you read this far, thank you! Any info advice would be greatly appreciated.

My child was diagnosed years ago, didn’t want medication for them as they were fine as they were.
It was brought up when they went for a job which required a health declaration from GP, as they weren’t on medication they were accepted if they had been they wouldn’t have been.

Where abouts in the south are you? I only ask, because I’m also in the south and the company that our LA have outsourced assessments to have just put a temporary pause on assessments unless they meet a super strict criteria.

My daughter is going through the assessment process for ASC and ADHD. She was already seeing CAMHS so they did the referrals for both (over a year ago now).

We were sent a bunch of questionnaires for us to fill in and for her college to fill in - except college we’re a PITA about it, so her CAMHS therapist filled it in.

About 6 months later then got a letter with more questionnaires - again College we’re a PITA about it, so the CAMHS therapist and us (with DD’s input) filled it in.

We’re now just waiting for in-person assessment appointments - I know she’ll be having ADOS for the ASC, but I’m not really sure what’s happening regarding the adhd assessment as she doesn’t meet the new criteria and I can’t get any sort of confirmation from them as to whether the temporary pause includes those already in the system or just for new referrals

My son is just ten and we have just obtained a private diagnosis via my private healthcare through work. However, the dx was heavily centered around medication (which we didn't want). The private psychologist has told us to get an NHS dx as well.

My son's primary school have always told me that they weren't seeing what I was seeing. My son is also well behaved and has severe dyslesxia, I think he just goes under the radar. In a meeting less than a year ago I was practically begging them to refer me via the NHS for a dx and they refused.

During the private DX they had to fill out some forms which completely backed up what I said and they have essentially said 'ah yes, this is what we thought he had all along"! I have been so angry with them as the things they have now said mean that he will find mainstream high school very difficult without an EHCP and I now have very little time to get the EHCP (huge backlogs).

School have to fill in forms even for a private DX so I suggest going for this to force their hands, if they are really not seeing anything at school then so be it. I would suggest that they are seeing it but primary schools in particular usually have rubbish SEN provision and don't want to make extra work for themselves. Which an EHCP would bring.

My son was referred for assessment by our GP when he was 6, he'd just gone into Year 1 in school and his teacher had raised concerns with me as he was finding it hard to sit still and focus or complete work. That was in the later half of 2019 and then everything was delayed by Covid. Initially we had a phone appointment where we were asked questions and we alos got sent a number of forms to fill out for him. We got an appointment for asssessment in the summer of 2020 and he got his diagnosis then. He has since then been prescribed Equasym XL to help him to focus at school, he only takes the medication on school days as it does affect his appetite if he takes it every day without breaks. He is performing SO much better in school with the medication and is much happier in himself because he loves to do well and get praised and gets very upset when he gets into trouble for not completing his school work.

Hi OP. I've just received an ADHD diagnosis for my son. Went to GP initially for (reluctant) referral for ADHD assessment, had initial appointment with CAMHS within about three months when they asked for my concerns and sent questionnaires for me to fill in and also to the school. My son was in Y8 at the time, finally had assessment about a year later in March of this year (he's in Y9). Since diagnosis, I have been in contact with CAMHS to explore medication options and was also given lots of information for support groups, parent courses, etc. I've met with the school SENco to agree plan of action at school. Although it's early stages and I had to wait quite some time for the assessment, since diagnosis I have felt very supported. I'm in London.

My DH was also very dismissive of potential for ADHD but is now coming round to the idea. It's difficult for some people as there's still a stigma attached.

Thank you all for your replies. We are in the Surrey London boarder if that makes a difference. Does anyone in this area (technically Surrey) know the current wait times? I was told last year by a co-worker that once a child goes into secondary an NHS diagnosis takes much longer.

We have never had any experience with CAHMS, but they go to private school so not then sure if we would? Also not sure how I would get the school to support a diagnosis when he masks so well that they don't see the issues we see at home.

I opted to save up the money for my diagnosis after being on the NHS waitlist for 18 months. That was nearly a year ago. Technically I'm still on the NHS waitlist, and still not been contacted to discuss a diagnosis on them.

For those of you who chose not to go the medicated route, do you have any advice on how to best cope / deal with your child?

My 5 year old daughter is on a community paediatric waiting list for a autism/ADHD diagnosis. The only thing that has put me off going private is two friends having their 'private' diagnosis rejected and still having to go down the NHS route. My daughter's consultant also mentioned this.

So, you need to go and have a meeting with the SENCO lead at your child's school, and explain about what is happening at home, and ask them to refer your child to CAHMS. Eventually (the wait time is currently about two years in most places) you and your child will be seen (usually several times) and they'll be able to give your child a diagnosis (my DS has ADHD and ASD.)

Medication is optional - and you can change your mind and go back to CAHMS if/ when you decide you want to try it, and then your care will be shared between CAHMS and your GP.

I strongly advise trying to sort it all out and get in in progress before secondary school - because puberty can make masking etc, harder.

Oh, and CAHMS will be able to give to access to groups to help you deal/ cope with it all too - in the mean time though there's an (American) podcast called TILT parenting which I found super helpful.

Both of my children were diagnosed with pretty severe adhd aged 6.

Dc has an NHS diagnosis post covid. It only took 4 months from start to finish so I'm shocked at the waiting times in other areas.

Confused re your point about CAMHs and private school though. Its just the NHS diagnostic service in my area and not related to education, private otherwise.

Pleasedontputthatthere

Why do you think he’d need an EHCP. He’d be highly unlikely to get one just for adhd.

OP you’d only involve Cahms if there was a primary mental illness too.

DD is on a waiting list for assessment for ASD and ADHD. She's been waiting since September 2022, so about 6 months. The GP says the referral was only made in January so I don't know what happened in between (I know the school SENCO definitely submitted it because I was copied in to the email). The referral was made via the school. She had a separate referral to CAMHS for anxiety and depression directly through the GP. The CAMHS triage came through within weeks and they assessed her as needing to be assessed for ADHD and ASD before proceeding with any further treatment for mental health. I phoned this week to chase it up and they said she's noted as an urgent referral (presumably because of the mental health issues which include self-harm) and it should be about another 2 months before the first appointment. Time will tell.

We thought about going private but just couldn't afford it, so it's wait and hope the NHS comes through before too long.

It depends on the area. In my some places CAMHS are the primary access point for ASD and ADHD as well as mental health. My dd's assessment is going through CAMHS.

My six year old was referred recently to a paediatrician through the school SENCO. There is a two year waiting list apparently so I'm not expecting to hear much anytime soon, but the school is brilliant and supporting my child anyway. The school encouraged me to meet with the senco, I didn't have to suggest it or fight for it. And I suppose getting a diagnosis at the age of 8/9 isn't too bad.

It's a shame your husband isn't on board but you could get the ball rolling with school anyway and he wouldn't have to be involved.

My son has just received his diagnosis of inattentive ADHD. We started the process in 2019, but then COVID happened. He is nearly 16 and is about to start medication. He has also been referred for autism assessment. There is a strong family history of ADHD

If it's a private diagnosis it cannot be used for exam arrangements like extra time. JCQ state that the diagnosis must come from the NHS if you want it to could towards extra time in GCSEs or a levels so it's worth the wait. Unless you want him medicated sooner?

Can you work with your son to develop some coping strategies? I have adhd and am not medicated. I struggle when stressed but the strategies work otherwise. The psychologist said I have actually used my adhd to my advantage in my life which was validating to hear

We're on Surrey / London borders but under a London NHS CCG. DS13 was dx in December last year with, in the psychologists words "classic" combined type ADHD. On reading various reports on him, including primary school exclusions, he was gobsmacked we hadnt had the dx years back. We were told at primary that basically he was badly behaved and the referral they did for him said as much so it was only when hitting secondary school that it was accurately pursued. The referral went to CAMHS in July last year after the secondary had done 2 terms of behaviour management plans to back up the referral so in all the process was about 4 terms in y7 /y8 when backed up by a supportive SENCO. I was also told that the gateway to support is from an NHS diagnosis.

You have to engage with the SENCO and if they aren't seeing the same behaviours, video at home but be aware that I am pretty sure that the behaviours have to be observed consistently and for extended periods in more than one setting.