Private Assessment for Au/ADHD

[fitnessmummy]

Sorry if this is the wrong place to ask.

Has anyone paid for a private assessment and been told there is no diagnosis? My daughter masks heavily and I worry about paying almost £4000 privately to be told she doenst have ADHD/autism. There is definitely something there but it’s taken me a long time to notice and I’m her Mum! It’s becoming more and more noticeable as she’s getting older but I do worry we won’t get the assessment we need.

Have been supported by her school who agree and after a chat with our doctor he also agrees. Not sure if that helps

Thanks

Does your dd agree?

Find someone who specialises in assessments for women and girls. My daughter has had a private assessment for both, and an NHS assent for autism.

The NHS refused to do an ADHD assessment as the school said she showed no symptoms of ADHD. She wasn’t disruptive or lacking attention, got her homework done on time and had friends.

It’s the ADHD that’s the biggest issue at home and the fact that neither the school or the NHS understood how females present, especially with autism as well, has been quite an eye opener. We are planning on paying for her medication as the ADHD is causing her huge issues and trying to get her an NHS assessment through the GP. I think at this point it will take years.

Don’t go private, it’s impossible these days to get the nhs to accept a private diagnosis. You can ask for her to be referred via right to choose and you won’t wait anywhere near as long as through your own trust. I’ve just been through this as an adult. There’s an excellent fb group you can join for advice

How old is your daughter? As a key fact for women and girls is that symptoms are affected by hormonal changes so you’ll suddenly notice things as they start puberty, or during or after pregnancy or menopause.

For me, it was around the age of 8, she suddenly really started struggling with friendships at primary school, became incredibly inflexible, hated change, started having meltdowns when things didn’t go her way. It took a long time for me to realise, she had her assessment at 14.

Be careful with the medication. It’s not a cure all. My son had a seizure within a month of starting medication and had to stop. Look at coping mechanisms and things like exercise and diet first .

Yes, diet and sleep are key although ADHD can cause huge issues with sleep. And routines help a lot too with the ADHD.

Mu daughter’s school accepted the private assessment and have made accommodations for her on the basis of that, I don’t know if all schools do though.

We are also doing right to choose, I’m just worried it won’t happen quickly and maybe not face to face.

If you choose carefully with right to choose you won’t wait too long. I was looking for one of my DC last night and the shortest one for us with a face to face was 4 weeks for an appt then 5 weeks for medication

This is much of what we are experiencing. She’s 12 just coming out of year 7 in secondary school. Shes struggling with anxiety too and feels low

Your DD should have the option of requesting face to face.

I have 3 DC: two I’ve known were ASD since they were small; were diagnosed late teens. Youngest child it took me a while to spot there was something: started with dyslexia assessment who said “specific processing differences / difficulties; consider assessing for ND (but not dyslexia).” A year or so letter we assessed for ADHD because that is what I see at home. ADHD assessor said “inattentiveness yes but not profiling as ADHD consider an ASD assessment.” 🙄 ASD assessment done another year later: no question. She presents so differently from my other ASD kids I just couldn’t see it. I wish I had done more earlier: she’s 16 now and we are in the middle of burn out that had I known she was ASD earlier we might have averted / seen the signs more clearly or earlier (hindsight). All of the above were private assessments and education / LA etc (for other kids) accept them.

Yes, private assessment at specialist ASD clinic. Initial pre screening ((£200) supported a full assessment, however after full assessment (£2k) it was felt not enough criteria was met for a diagnosis. I think not everyone on the panel agreed and it has to be multi panel, there was also a lack of evidence in the early years. We were undecided before and still now tbh, sometimes I think yes lots of traits and sometimes I think no.

We did get a diagnosis from a private assessment for DD. However, the way the company did it was that they charge £175 for the initial appointment which was a joint appointment with me and DD and we chatted through the triage forms and lots and lots of other things. At the end of the call they then advise on the next step. So in our case they said they recommended a full asd assessment but not ADHD. You only pay the full cost when you go ahead with this which is reassuring.

We always knew one of my DDs was quirky and super intelligent but it wasn’t obviously AuDHD as she got on really well at school. Everything seemed within the normal parameters of childhood development, really.

As soon as she got to secondary, the differences between her and her peers became glaringly obvious, and she was aware of it too but didn’t have the perspective or words to describe what the issues were. The masking had stopped working and she felt alien in their world, and they started to reject her because she didn’t play along with the rules of the tribe, which caused a lot of anxiety.

In year 8, the school flagged it to me and explained how it was a classic presentation of adhd/autism in girls and all of a sudden my mum blinkers fell and it was all very obvious to me. We see them every day, we are their safe space and accept them as they are, so sometimes it’s not immediately apparent to us.

If your child is struggling with something and the school and doctor agree, then I believe it’s worth it, no matter what the outcome is. Our assessor explained that if ADHD and autism were not diagnosed, other processing issues might be picked up or it might point to OCD or anxiety, which can then be treated.

We went through exactly the same worries, and in the end I’m just so glad we did it when we did (Y8). It’s given her time to adjust to the idea, accept it and find ways of managing it, get a good therapist and also to trial medication that has been life-changing for her. She will start Y11 in September in the best possible place to tackle her GCSEs and it’s the best thing in the world to see her happy and accepting of herself.

We did a private assessment that gave the school all they needed to know to put her accommodations in place. We haven’t transferred anything through to the nhs just yet but I’ll be tackling that in the coming year.

I forgot to say, same as Oakley above, we had a triage session that advised which tests were relevant to take.

It’s not impossible. I went private last year and was accepted by CAMHS and receiving NHS medication within 5 weeks.

Things have changed a lot with the ICBs, it’s a postcode lottery now.

It is understandable for families to feel cautious about private assessment costs, especially when a child masks heavily and symptoms are harder to evidence. Written observations from school and the GP can help build a clearer picture. ADHD Certify may be worth exploring for ADHD assessment support, particularly to understand the process and what evidence may be useful before proceeding.

I can understand why you're worried, especially with that sort of cost involved. A friend of mine had the same fear before her daughter's assessment, but she said the biggest benefit was getting a clearer understanding of her child's needs, regardless of whether the diagnosis was confirmed. She also had a consultation with Autism Detect beforehand, which helped her know what to expect from the assessment process and the different possible outcomes. It sounds as though you've got good support from both the school and your GP, which is really encouraging.

I’m im sorry hear she’s in burnout. This is exactly what I want to prevent, I hope you get lots of support

This is what we thought when she was little. Now she’s 12 she’s changing and it becoming so much more obvious to us at home

This so so reassuring to read, what you have described is exactly how my daughter seems to be. This gives me hope! I just want her to be happy and comfortable! I used to be so concerned with education and grades and now I’m finding a care so much more about her happiness! Thank you

Ours was 11yrs at the time, now nearly 14. I’m still not convinced either way. She still has some quirks but she coped fine with transition to secondary school and still doing well. She’s been to 3 schools and had no issues with any transitions, none of her teachers or schools raised any concerns, always said she was happy and settled, sociable, no issues etc. I guess some people do just have traits but not enough to persistent or impactful enough to warrant a diagnosis.

One of the private places near us offers an initial screening test for around £250 and will only then goes ahead with the full assessment if that points to it being likely. I’ve also heard their assessment process and reports are fantastic.

You don’t need NHS to accept an ASD diagnosis but you do need them to accept shared care for adhd medication. So it’s worth asking GP who they would use for right to choose and then maybe seeing if they also do private. Otherwise you’d have to put her on the nhs wait list just to get reassessed for medication if it was needed for adhd - unless you’re prepared to pay for private prescriptions.

I think there is a lot of variation by area. We had a weak school who didn’t believe in SEN and really downplayed my DS’s symptoms until a temporary teacher called it out. We managed to get a referral start of year 6 then waited 18 months for NHS assessment, only getting it then by taking a last minute cancellation. We waited a further six months for medication to become available due to shortages. During the initial wait I asked around other parents who shared their experiences of private assessment and who told me to hang on for NHS as it would make getting meds and talking to the school about DS’s needs easier.

It worked out for us fortunately and the meds get my DS through the day at school and through the odd difficult day where concentration and patience is needed and high energy definitely isn’t! It has made a real difference to his education.