Diagnosis - please talk to me.

[thegreenlight]

Have made the decision to pay £2000 to get DS privately assessed for asd/adhd. Please tell me I’m doing the right thing. Its a lot of money. He’s 8 and I’ve known that there’s something not quite right since basically birth. Can I have positive (or not so) positive experience, please. This is a big step for us.

Pls could anyone advise what strategies have been put in place by schools to help children cope and meet their potential whilst waiting for a diagnosis, particularly for children with add?
We’ve been advised to get a private assessment for adhd by my daughters school as the waiting list for a CAMHS assessment is 2 years here (she is on the waiting list following a school referral in October ). We don’t see the private doctor (who happens to be the nhs lead as well) until February. However, the schools only ‘interim strategy’ seems to be ‘regular refusing’ which basically means reminding her every 5 mins she should be doing something
Surely there is more to supporting children with adhd than this? Her problems go way beyond just needing to be ‘refocused’
I have asked what will happen if she is diagnosed with adhd and they have said nothing different as an adhd diagnosis is literally a diagnosis that your child is distracted and disorganised.

Sorry e regular refusing should read - ‘regular refocussing’ which is apparently a thing

We paid for our DD when she was 14. It was a full day assessment on p of around 50 pages of questions completed by me and DH.
She was unsurprisingly diagnosed with Aspbergers.
She was really upset and won’t discuss it.
She is now 20 and at university where she would be eligible for different things, but refuses to apply

TimeToGoNuclear- the help offered depends heavily on the school and how good their SENCo are, unfortunately. Some schools don't require an official diagnosis to get help, either. The help I received- admittedly at sixth form- and saw others receive at school was:

Laptops for some writing work and exams, because my processing speed slowed down my handwriting
For people with poor coordination, special handwriting pens and pencils
Breaks in exams/tests
Private rooms for exams/tests
Extended deadlines on some homework tasks
A guided homework session one or two lunchtimes a week where I could go to do homework or unfinished classwork while supervised and helped to stay on task by a teacher.
More generally, though this didn't really apply to me I saw it apply to many others, more leniency when it comes to troubles or rules broken which are clearly a result of symptoms. If one of my classmates who also had ADHD walked out, or got angry at feeling unable to do things, they were treated with more sympathy and help than anger or punishment.
There are probably more things that apply to primary and secondary school, I'm sure others here have more experience. I hope you and your DC can get the help you need

@TimeToGoNuclear

Pls could anyone advise what strategies have been put in place by schools to help children cope and meet their potential whilst waiting for a diagnosis, particularly for children with add? We’ve been advised to get a private assessment for adhd by my daughters school as the waiting list for a CAMHS assessment is 2 years here (she is on the waiting list following a school referral in October ). We don’t see the private doctor (who happens to be the nhs lead as well) until February. However, the schools only ‘interim strategy’ seems to be ‘regular refusing’ which basically means reminding her every 5 mins she should be doing something Surely there is more to supporting children with adhd than this? Her problems go way beyond just needing to be ‘refocused’ I have asked what will happen if she is diagnosed with adhd and they have said nothing different as an adhd diagnosis is literally a diagnosis that your child is distracted and disorganised.

Probably not applicable (Scottish doc) but we use the Circle resource to assess both the suitability of the learning environment and to analyse any children with difficulties. Pg47 is general strategies for attention and concentration, for example. Organisational skills a few pages after. Many (most) are things that a decent teacher will be doing for the whole class, but there may be a couple of things to try!

Oh, and the last one I forgot was sensory needs being accommodated! I focus far better when I have controlled sensory input from headphones- noise cancelling or ambient sounds, sunglasses, and various stim/fidget toys. Once I was diagnosed I was allowed to use these tools in classes and saw others granted the same access from primary onwards

Link (not sure it will work) education.gov.scot/media/szlogrpf/circle-primary-resource-int.pdf

Thanks @septumring99 - she is y6 so not yet allowed a laptop etc.
I feel like I am getting a brush off by the school whose SENCO is not amazing tbh.

Or maybe they are just biding their time until she moves up to secondary in September

I've got one diagnosed and one not and guess which one is getting more educational support 🤔
Personally I wouldn't pay for a private diagnosis

If you can afford it do it! We were lucky that DS2 was diagnosed aged 7 via the NHS (although I had to have my parenting assessed by Barnados before being put on the list!). If we hadn't been ablet o go via NHS I would have got the money somehow to go private.

The diagnosis allowed us to access medication (another journey in itself) which he takes to allow him to focus at school. Just being able to talk to him about why his brain is wired differently helped with his self-esteem and that he wasn't 'naughty'.

We had DS1 assessed privately for dyselxia as the school had a concern but felt that there were other priorities for their limited budget.

DS1 is allowed extra time in his exams but DS2 has had no support from either primary or secondary school. Had a parents evening for DS2 recently and asked for updates on his behaviour in class as I'm noticing his meds are wearing off earlier in the evening. Most didn't know he had ADHD which shows that the meds work. He loves being 'normal'.

Seems like a very sensible use of money as long as you're going via someone reputable, which I'm sure you are. I hope it all works out for you both.

[quote jeaux90]@SnoopyLovesLucy I was going to say it sounds like a lot. My DD assessment was 450 in total, follow ups and first couple of private prescriptions probably totalled about 1100 end to end.

OP do your research on who you want to work with. If you are around the Oxfordshire area I have a recommendation. [/quote]
I did look at one site some time ago and it was around that fee. It depends what they offer. As it's my profession I can read between the lines of the qualifications and sometimes they are not all they seem.

A private dyslexia assessment will cost around £400 (less from a teacher than a psychologist) and lasts about 3 hours, plus the same amount of time to assess the tests and write the report, but this ADHD fee sounds very high indeed.

Medication is not always suitable and there is a kick back against it as some people felt children were wrongly or overly medicated.

Can I ask what you want from the diagnosis? Schools are only obliged to give support based on need not on diagnosis so in theory it doesn't make a difference if there is a diagnosis. In everyday life diagnosis is not relevant, dd was diagnosed at 2.5.

Medication is not guaranteed plus only certain professionals can prescribe - if it's a private assessment there's no guarantee you can get ongoing support and medication from the nhs

That is something to remember, not all children with ADHD are suitable for medication. Many are but it definitely isn't as accessible as you'd hope. My DD can't access medication yet.

In everyday life diagnosis is not relevant,

It absolutely is, particularly with autism. I often see people dismissive of diagnosis as if people won't be autistic without a diagnosis. It's ridiculous. I was diagnosed as an adult and it changed my life. I needed that diagnosis. It was absolutely relevant to my everyday life and if I had been given it sooner (obviously things were not the same when I was a child) my life could have been very very different.

With adhd, diagnosis is the difference between being able to access the medicine you need or not

We paid for a private assessment for our daughter, things started to really fall apart in high school and we could not wait for the NHS, the mental health team couldn't even get a referral accepted for assessment on the NHS! Like you we looked for someone with experience of working with the LEA. In our case both consultants had worked in the NHS and had experience of LEA's and Tribunals. We also investigated thoroughly their assessment methods to make sure it met NICE guidelines and mirrored our local NHS trust. We did get our diagnosis accepted by the NHS but it took a complaint and threat of legal action, in the end the NHS conceded the assessment was even more thorough than theirs!

However, our assessment was for ASD not ADHD. Our diagnosis included ADHD (a surprise) but the NHS wouldn't accept it as they hadn't followed the standard tests of our Trust. We then had to go through a testing process with the NHS and it took over 8 months from the point our complaint was conceded, to get medication. This was fast as they bumped us up the queue, I'm sure just to get rid of me. They were very clear that even if the correct ADHD tests had been done, they would not have prescribed medication without an NHS diagnosis. Therefore, you need to plan for the possibility that if you go private, you may need to pay privately for prescriptions.

Thankyou for all the advice - an awful day at school for him today. Screaming, shouting, walking out of class, punching walls. He has no control over himself when het up. We don’t see any of it at home, but I realise that it is because we make subtle changes to what we do and how we speak to him to make him comfortable. Any situation where I am not in control, he struggles (cubs, school, other’s houses). I thought his behaviour was like this because I was a bad mum, but I now realise I must be a pretty good mum after all to anticipate his needs the way that I do. DH picked him up at the end of the day and couldn’t recognise him, he was so shocked by his behaviour.

He needs to be medicated - he has such low self esteem that a diagnosis would help him not to hate himself and his lack of control. He’s now very calm and remorseful. Lid flipped, damage done. He really is such a bright boy - reading at 2, knew all the elements of the periodic table at 5. I can see this leading to long term mental health issues if he doesn’t have an explanation.

This is the part about medication:
A comprehensive report is then written which provides an outcome to the assessment based on the evidence attained, as well as recommendations and guidance. The assessment is compliant with NICE and recognised by local authorities. Where appropriate a referral can be made to a colleague for medication which is chargeable at an additional fee of £195 which includes establishing the most appropriate medication and titrating this to therapeutic dosage and then setting up a shared care agreement with the GP. The assessment is compliant with NICE.

Waiting times in my county are 4 years plus. That’s why it’s so expensive, there’s a lot of demand. This isn’t a fancy thing we are getting for the sake of it. It means no holiday this year (again) but we have to get this done and dusted before high school.

Please double check with your GP before assuming they will enter a shared care agreement with a private practitioner. Our local shared care for children specifies that the agreement has to be with the local children’s hospital hence we would not be able to enter into an agreement for a child.
Adults have a bit more leeway
It may not be a problem where you live or occasionally with very long waiting lists this can be modified.
Please be aware though that to stay under shared care you would have to remain under the private practice until taken over by the NHS

Hi, new here just looking for some advice or too read stories of families going through the same thing, my oldest son when he was 4 in reception started having a senco teacher involved as they said he was showing traits of autism and adhd, we always thought he was hyperactive constantly and had angry outburst but he was our first child so when people said things about the way he behaved we didn’t really think much of it until he went to school and they started seeing issues like head butting things and angry outburst, we was constantly being called to collect him because he had hurt himself from running and jumping around being careless, but he is now 8 years old in year 3 and he’s doing year one work that he’s still finds too hard and can not do unless he gets a lot of help, his class teacher said he’s not made no progress in about 3 years and his behaviour is still the same, he got referred to cahms a while back but it didn’t go ahead because of covid and family reasons at that time that made it difficult, but I’ve asked if there’s anything els school can do to help him or do the referral again but the senco told me to go to the gps but they turned me away and said it’s better if school just did the referral again but school just don’t seem bothered and I feel like we are just stuck with nothing we can do, me and my husband are just so worried that he might not make progress before senior school.

I would go ahead. There is an attitude that sometimes private assessors are swayed by what the parent wants to hear, but with a 4 year waiting list you really have no other choice.