ADHD Referral

[PastaLaFeasta]

After getting lost in the system and failing to get anywhere with a GP referral we finally met with someone via the school referral - first requested in Autumn. They've agreed to refer with concerns about attention/impulsivity but a little on social skills - there was some prodding in the ASD direction but I'd be surprised if that was the case.

DD is six and just finishing year one. She is mostly happy and is at expected levels at school and apparently did very well at the recent phonics screening which was a surprise. We have sleep issues, lack of impulse control, fairly regular tantrums plus lack of focus - the latter is a worry with school as she may fall behind, especially on writing which needs more careful concentration. My biggest concern is how teachers etc may react to her behaviour - she's not often deliberately naughty but I'm aware adults at school may give her a harsh telling off and that can knock her confidence over time.

The referral will take nine months and we won't have any access to support in the meantime, although school will be able to engage with the people we spoke to for advice. There are no parenting classes as offered in our neighbouring borough where our GP is based.

Is it worth looking at trying to get a private referral, would it be worth it and how do we go about getting a private diagnosis? The council staff warned that the diagnosis may not result in much change but may offer a bit of protection and understanding from school staff etc. We are on our own with this and have little clue as to the process and what options we would have. Any advice would be great as its been a nightmare to navigate so far.

[Mollyweasley2]

Hi pasta, the council staff has been really honest with you and I am afraid I may have grown cynical over the years but in practise they are right.However, a diagnosis will give you better understanding from everybody, your DD will also understand herself better and she will definitely have more protection especially when she goes up to secondary school so the diagnosis is really important. Going private really depends on how fast you feel you need it. If you are already treating her as having ADHD/ASD and so is the school staff, then there probably isn't any need to rush but if you feel you are at the point where you need a confirmation in the form of a diagnosis or you have reach crisis point then you could go private (it is quiet expensive though). There is however not as much help as there ought to be out there and it is really a matter of educating yourself on the subject. Try this www.additudemag.com/index.html/, it is full of tips, also you could try your local parent partnership for more advice. Also when I was looking for help for DS, 3 years ago, I didn't think he had ASD but that is because I didn't really know what ASD was (he does have an ASD), also girls tend to hide they difficulties and so are much harder to spot (look for obsession over a particular topic, anxiety, sign of not understanding the social scene…)- Hope this helps.

[PastaLaFeasta]

Thanks Molly (sorry delayed response due to shock of recent events). I know you are correct, I have health issues myself so am very pessimistic about likely support and the fight to even get diagnosed. But having the label could be empowering by itself, and it's validating for us too - she's always been difficult compared to other babies/toddlers/kids. We occasional reach a crisis point of sorts, especially if sleep is worse, but other times she's great and there's a big upside to her behaviour - fun, outgoing, confident, talks to anyone (the opposite of me).

The school are making the right noises, they have a bad reputation for SEN but could be tackling that as my info is a few years old. As long as she remains happy at school I will be happy.

As parents we are mostly in the dark and have no support and limited knowledge. We are two adults and two kids so it's less of an issue to an extent, we cope but we'd like to do more. DH is less bothered, I suspect he has traits of ADHD so doesn't register some behaviours. Our neighbouring borough has a very active support group so I may ask if we can access their services and they may signpost other professionals etc. We can afford some private services but it's a question of whether it's worth it. It's hard to find recommendations, same with any health professionals.

On ASD I could see how the staff were asking questions to fit those behaviours, DH didn't realise and was describing behaviours more severely than the reality. There is a bit of those behaviours but they are more mild and I'd been putting the social stuff down to the ADHD. I do know a teen girl with ASD diagnosed and would never have guessed so can see how it can be far more subtle in girls.

Trying to get any support or advice feels like repeatedly knocking on doors and getting no answer. And having no diagnosis does make it harder to justify asking to access support. Our local parent support contact won't offer support without being further a long for example. Utterly frustrating but for now DD is happy so there isn't a rush.