Where to get ADHD 2nd opinion & cost?

[sunnymum44]

Hi, am about to see paed for 2nd visit after she told us last year that DS (5) likely to have moderate ADHD. It's been so long since our last contact with her as to be honest, we were in denial for a while, convincing ourselves again as we have been for years that he is "normal". Also don't want to do the school questionnaire as v worried about the label he will get (private school, don't support special needs, another story....) and we don't want him "ousted" as a trouble maker/ non achiever. The paed is going to support us in not telling the school at this stage as she understands the potential consequences. We obviously will have to if his learning begins to suffer - at present they say he is average and he's only in Reception anyway. Strangely, though he's been in trouble a lot for boisterous, rough behaviour, they have never noticed or suggested ADHD.....

So, anyway, I spoke to a private psychologist and after half an hour of him telling me to be very careful with community paeds overdiagnosing conditions etc. and that my DS could be perfectly normal & be a completely different child by age 10, he told me for an assessment & full report from him that it would cost £400 .

Please could someone advise me as to whether getting a private opinion will really cost this much (I did expect around £100 but really can't afford £400 at the moment) and how/ where do I go about getting one? I just feel we need one as I am worried that perhaps he doesn't have a "condition" and if it gets to the stage that we do tell the school, what if the paed was wrong and it affects my DS throughout his schooling? He definitely has stopped some of the bad behaviour (doesn't hit others much anymore) but we are coming across other difficulties now - really struggling to get his reading done at home, he's v argumentative, v impulsive, just extremely hard work and stressing out the whole family etc. etc. If we're honest to ourselves, we do agree that there's nothing at home that has caused his difficult behaviour for 4 years and having read loads and loads, he certainly does show all the signs & traits of ADHD. It does seem to get better and worse at different times though (which we can't pinpoint why either).

Anyone any advice for getting a 2nd opinion? Thanks for reading.

Do you have any reason to distrust the community paed, other than what this psychologist has told you? I'm curious why you spoke to the private psych to begin with. (Not being snarky here, just trying to get at where you're at with this, that's all!) What specifically are you looking to get out of a second opinion? Are you possibly looking for confirmation that nothing is wrong with him? Or do you feel an error has been made by the community paed?

I have to admit that I'm always a bit suspicious of someone offering a different viewpoint, when his reasoning is going to cost you a fair bit of money to explore further. Is he saying your child is not SN at all?

It seems you are extremely worried about your child being labeled and treated poorly by the school because of this. And that's a valid concern, obviously. I guess I would say a lot depends on whether or not he seems to need support at school - if he does, then pushing to make sure he is seen as NT is not going to help him. If he does not need additional support at all, it still doesn't necessarily mean the community paed is wrong, but could mean he is developing coping skills or maturing and learning to adjust his behaviour in some situations.

I guess it depends on what you're hoping to hear. Are you clinging to this in the hopes of being able to put to bed the idea that your child has SN? (And no, I don't mean that to be harsh - we all do that - god knows I get edgy before every appointment thinking someone is going to say "there's nothing wrong with this kid, he's just badly behaved!" I haven't decided if I'm offended or saddened by the senco and the paediatrician saying "oh no, there's DEFINITELY something going on there! It's pretty obvious!" )

Also a point, if your child is 5 now, of COURSE he's going to be a completely different child by age 10!! Sooo many changes and stages to go through between those 2 ages - it's impossible, I think, to really say where he'll be in 5 years!!

A private psych cost us £700 for a 3 hour assessment of our ds2. He got dx for ADHD from an NHS paediatrician, but the private assessment was for learning difficulties, however, they could have dx the ADHD too. This was the going rate when I was researching it, so you've got a bit of a bargain to be honest. Have you checked the psych out on here: www.achippp.org.uk/

Thanks Triggles, you're absolutely right about a 5 year old and a 10 year old.......!!
I guess we're just so confused at the moment along with going thru a particular "phase" of not being able to or knowing how to manage him. We've had a screaming rage from him just 2 minutes ago about winding his sister up again- involved me, DH, him and DD..... I think we're at a point where I just don't know where to go for help - I'm not having much luck with finding a local support group and as I'm adamant about the school not finding out I feel I can't trust or talk to local friends with DCs the same age about our difficulties with DS. So feeling all a bit intensive and alone.... Hence maybe wanting to talk to someone else who "understands".

We know there's something wrong and I want him to have the help and management he needs but I guess as we seem to be coming up against new issues at the moment and finding them incredibly hard, I'm so sad that this is how it's going to be.... Yes, maybe I'm just in denial and finding it very hard to accept he probably has SN. Though at the same time I'm so grateful for the boy we do have and know our issues are really nothing compared to others' on the SN threads.....

Also, what doesn't help is both sets of grandparents saying, oh he's fine, we don't think he could possibly have ADHD & telling us we need a 2nd opinion!! When actually what they're doing is making me think it's all our fault and we're bad parents.........So sometimes I just feel like a useless mother who can't cope.

So, maybe we just trust the paed then! She is the expert and we know she's probably right! I suppose as we're not going for an official diagnosis by doing the questionnaires for school & home environment, I feel it's just her opinion.....

Thanks coogar, will have a look.

Sunny just wanted to say .... getting my son dx was the best thing we could ever have done for him. He spent the first 3 years at school labelled the naughty kid. He was punished every day for not being able to sit still, stay quiet and pay attention. It was a nightmare for all of us. He was unhappy and stressed out - really couldn't understand what he was doing wrong. His old school was crap with SNs. We changed schools, got him dx and he is a totally different child. His school are brilliant - as a result he is happier, more confident and his learning curve as gone sky high. His social skills have improved ten fold because he doesn't have the reputation he had in previous schools and the other kids don't see the teachers constantly berating him . All this has been down to a good school who understand special needs and support the child effectively. I would seriously consider if his current school is the right place for him - sorry to put a spanner in the works ......

While I understand you saying you don't want the school to know, I'm curious about what you mean when you say they "don't support special needs." Are they simply intolerant? I would imagine they would HAVE to deal with it, if your child is dx'd with SNs. If they're intolerant of a child with SNs, then unfortunately you might need to consider if it's the appropriate place for him. But again, that largely depends on how he is doing in school or if he does need additional support there. If he doesn't need the additional support in the school at present, I can't see where there is harm either way in the school knowing about it, IYSWIM.

It IS difficult when you have people (close family and/or friends) that are questioning things, insisting he is fine. But you are his parents - YOU know best, and you've already pointed out that you feel there is something there. It might be helpful to simply point out to them that their continual denial of this is extremely detrimental to him and stressful for you as parents, and point out that you are expecting support - if they can't be supportive, then perhaps suggest they keep their opinions to themselves? Yeah. I know. Works in theory,eh? We got a fair bit of "denial discussion" from family and friends initially, but a few well placed comments whenever it began tended to cut it back significantly. It's pretty much all supportive now, albeit a bit "he'll grow out of it,right?"

I'm not saying you SHOULDN'T go for second opinion - obviously that's up to you. I just think it might be helpful to think about what you want out of it, and where you plan on going from there, before you decide. If it's not going to make any significant change in how you are doing things, is the extra stress and expense needed? Would it be more helpful for you to find a good support network instead to help you cope?

Thank you, I really value the opinions of people on the SN threads who I know understand the issues we have. Others can be very judgemental and disbelieving.

Regarding the school knowing, even if he doesn't yet need any extra help, I feel they would immediately expect the worst from him and wouldn't be so keen to "get him through" to the end of the juniors then on to the senior school. They have been really good recently in helping improve his behaviour by setting up reward systems etc. which are definitely working. As coogar says, I feel he would be even more known as "the naughty one" or the "one with ADHD" and I'm sure other parents would find out and probably want their little ones to avoid him....... I've just experienced another parent telling her child not to play with him as I know she feels he is a bad influence on her DS...... This is an element of ADHD that we really can't face yet - the stigma, judging, ignorance etc.

Also, Triggles, since DS started at the school I've found out that a handful of SN pupils have actually moved to other schools as they have just not been very helpful in meeting their needs and expected the parents to provide extra private tuition to get them up to speed academically. I also get the feeling that those children have pretty much been pushed out as the school has said they won't "make it". So, yes Triggles I suppose they are intolerant.... I know you're both saying "move school, it sounds awful!!" but it's actually a really lovely school, down the road from us and we believe DS is actually quite bright so hopefully he will be fine if we can steer him properly..... If it became apparent in the future that it really wasn't the right environment for DS, then of course we'd have to consider a move but I really wouldn't want to consider that unless really necessary.

In a funny way, sometimes we want a diagnosis as I know it would be a huge relief to know that we are not bad parents(!!) and that we can start to get some help for DS and learn ways to manage him and make life easier for him. It might also be a good thing to be able to tell everyone and have them understand how hard things are and how we need to "do things" differently as a family. But on the other hand, there'd be all the ignorance and judging to face.... I will try to have a few more ready comments up my sleeve Triggles!

So, yes we definitely need to find a good support network I think. Even if just to share current issues. Maybe I do need to concentrate on that rather than getting a 2nd opinion.......
Thanks for your support.

sunnymum44 I just wanted to remind you that we are all here whenever you need to vent or whatever, as well! My DS2 is 4yo, in reception, and being assessed with suspected ASD and ADHD, as well as a few other things. His school has been brilliant, and he is at the level of needed 1:1 for the entire 30 hours that he is at school. I completely understand what you're saying about worrying about the stigma of others knowing, although in our case, there's really no way to hide it. We had the option of looking at other schools, as we are nearing the end of the statementing process, but DS2's school is very supportive of his needs, much more so than your average school, so we're happy to keep him here at this school. We will, however, need to source a new school once he moves out of primary, as the attached school is very intolerant of SNs. It's all a matter, IMO, of finding what works best for your child and gives them the best opportunities.

Thank you Triggles, good luck with your DS2

Sunnymum44 I have experience of both state and private schools with both my sons (one NT & one ADHD). In my very humble experience, few private schools have good SN provision, whereas the state system is more geared up with at least processes/obligations in place to support kids with SN. This is not to say that your son's school doesn't have a good SEN support teacher or SENCO (do they??) or that they do not encourage SN children to join them. I can only speak from experience. At the end of the day, if your ds is happy in his school, you have no reason to move him. An unsupported child is usually a miserable one. There is absolutely no way that any diagnosis should be put in the public domain and would be a breach of your child's rights if school disclosed such information to others. I do understand exactly how you feel ... we have not disclosed ds2's dx to anyone other than family & close friends .. thank god his improving or the facade would crumble

Perhaps I misunderstood. I thought Sunnymum didn't want the school personnel themselves (head, teachers, TA, etc) to know of his dx or SNs, not other pupils and such.

Ah, I must read OP properly. I read a few posts down where Sunny mentioned another mum not wanting her child to play with her ds. Well, in that case, even more reason to seek a dx if it's warranted. At least that way, he'll be the child with a formal diagnosis and not plain 'naughty'. Hopefully, he would then be supported and that should help him manage his own behaviour. He would feel less 'wronged' which in turn would help his esteem and confidence - kids constantly told off at school get a bad reputation with the other children and it snow balls from there. I understand all the OPs thoughts and feelings - it's a natural instinct to protect your child but at the same time, trying to do right by them ....

Thank you for posting MadameSin. Unfortunately the problem is that the school don't have the resources to provide any extra support staff for SN children... So, I get the impression that it would be up to us to provide extra tuition if necessary. And I'm also worried that they wouldn't really "want him" & he may be gently pushed out if they are worried about their future results (see my reasons for worrying above)... So, yes a state school may indeed be better for him but at present he is probably benefiting more from a smaller class size. I do hear you though about how a diagnosis can be a good thing and we will always try to do our best for DS - if that means getting the diagnosis with the school involved and/or moving school then so be it.......

I'm really interested to hear that your DS' behaviour has improved and you're able to "hide it". Is he much older?