Daphne Keen worth 7 month wait for private assessment? Alternatives?

[Triotribulations]

Just that really, we have been offered a private assessment by Daphne Keen (expecting to find definitely ASD/ DCD and potentially some ADHD traits) in September.

I know she is well respected, and has NHS contract to help support any diagnosis she makes should a private one be questioned. But the wait seems long. Is she worth the wait? Or is it worth pursuing a diagnosis earlier from another?

School are supportive (despite DS masking like a pro) and at home we do lots to support DS as if he does have autism and dyspraxia - so a quick diagnosis isn’t necessarily urgent, it’s more for my sanity as been trawling through the system & falling through cracks for over a year now. Plus we have the usual family members who say there is nothing wrong/ blaming our parenting etc. which has worn me down & I would love to tell them to pipe down!

Sounds like you need an assessment ASAP. I'm sure someone will be around soon but have you contacted the National Autistic Society as may recommend a paed? Daphne Keen is great as she is also an NHS consultant so her diagnosis is taken seriously and her fee is very reasonable as she spends ages reading stuff. Does she have a waiting list? Has your son been assessed by an OT for his motor skills?

Thanks for your response.. So, yes DS has weekly OT and has been seen by three different OTs in last year either for therapy or assessments. All of them say he has gross & fine motor delays.
Secretary said she would let us know if any cancellations but equally am sure that’s the case for many patients.

NHS Paed last week refused to diagnose DCD as hypermobility is present but we know that it is not an exclusion criteria within DSM-5 & that many are diagnosed with both hyper mobility & DCD - hence why we want someone to look at DS as a whole with his asd traits being a significant crossover.

It’s a long old process and the last few months have taken a huge toll on me so weighing up whether to wait another half year for a diagnosis we can be confident in, and will be most useful for the future or whether my sanity needs answers sooner. Long term gain versus short term in a way.

Hi

Last August we had arranged to see DK to asses our DD. We were given an appointment in October.

I cancelled and decided to go with Dr Stefan Studnik at the Portland Hospital as I was able to get an earlier appointment (the following week). He also works as a Developmental Paediatrician on the NHS at St Mary's Hospital and is the Autism Lead. We had a specialist SALT present - Jennifer Warwick as part of the "multidisciplinary" team.

Cost £550. Diagnosis and report fully accepted by my DDs nursery, LA and our local child development centre. We have been given loads of local post diagnosis support and we are currently going through the EHCP process.

Thanks Oranges, that is so helpful to know and I am so pleased you were seen quickly and all worked out.

Dr Studnik sounds fantastic Oranges. And £550! Aah, Trio, it's a rough journey isn't it. Get the diagnosis ASAP and onto the next stage. We got the whole family member stuff too. Still get 'it's just his speech' ALL the time. Especially from my mum who used to work with children with SEND.

@orangesnectarines, I have sent an email to Stefan Studnik & got an auto response which included asking me to confirm if we had a GP in Surrey. Do you know if he would see people outside of the area (we are two hours away)?

@Triotribulations I remember reading that back then and I was a little confused myself if I'm honest .

I live nowhere near Surrey, and all was ok on this side. I'm sure you will be fine. Please update when you hear back !

@OrangesNectarines please could I ask for a bit more info on Dr Studnik? He has said there is an option of an assessment which would provide a working diagnosis(sounds about the price you paid), or a full blown assessment including ADOS and 3Di which is considerably more expensive.but is what we would npossobly need for identifying high functioning/well masked asd traits. Did you get a working diagnosis or conclusive diagnosis?

What was Dr Studnik like with your DC? Just wondering how he would approach DS who is very wary of new people esp those with accents!!

Thanks for your time x

I understand your concerns.

At our first appointment we were seen by Dr Studnik himself and a Specialist SALT, we were given a working diagnosis of Autism.

Assessment was then followed up by the Specialist SALT who visited my DD at her nursery (another setting - as required by the NHS guidelines). However this may not be needed if your child is obviously Autistic from what was explained to me.
My daughter displayed signs within our initial/first assessment, but they wanted to observe her in another setting to see how she interacted with over children her age, and also speak with her educators to find out their views and concerns. I agreed to follow this process for my own sanity.

Overall Dr Studnik was fine in my honest opinion and from my experience dealing with him. He was very calm, kind and understanding. He is very respected in his field, and as I explained earlier, our local CDC was more than happy to accept his diagnosis. They even wrote supportive reports to rubber stamp the diagnosis which really helped us.

I will admit though - it did take him a while to send over the final report which I found a little annoying at the time, but this wasn't directly his fault. He saw my DD during the summer holidays, and had to wait until her nursery was open to allow the Specialist SALT to assess her over there.

Specialist SALT assessment cost me £500 so altogether it was about £1050.

Both reports were 'merged' together and concluded with a diagnosis of ASD.

DK is equally good, well known and well respected, but I honestly went with Dr Studnik because of his availability. I also felt reassured that his assessments involved another professional who was there to see and review my DD face to face, which gave us some sort of reassurance as we were in denial and genuinely unsure if she had an ASD. I believe DK does the same, but instead asks for reports from other professionals/school etc to make up the MDT.

Hope this helps

I'd be concerned that a 'working dx' would be like the questionnaires you fill in that end up saying it's highly probable the person is on the spectrum.

I think - and it's only a personal opinion - they are designed for parents who are in denial or shock or who are very uncomfortable at the thought of having an autistic child, to ease them into the idea of a full dx at a later date, rather than only have a full blown dx as the only option, as they'd be likely to flatly refuse a full blown dx straight away.

I'm not sure a working dx would be of benefit as it wouldn't be in-depth enough to state what interventions an individual needs.

Have you looked at the Lorna Wing Centre?
www.autism.org.uk/services/diagnosis.aspx

@BlankTimes I completely agree with what you're saying.

But in our case it was genuinely because they couldn't give my DD a full diagnosis after our first appointment. She's very high functioning and she's a girl. They wanted to asses her further, and as expected she was given a full diagnosis after everything was completed.

I guess it's no different meeting a paed for the first time who suspects a child has ASD, and then asks you to come back for further assessments. This is what usually happens on the NHS, however DK doesn't take his approach so it may be easier to book with her to avoid going back and forth.

After you are given a working diagnosis/suspected ASD report it's up to you as a parent to follow up or leave things as they are.
We chose to go further as we needed clarification.

But both reports will equally give you recommendations to support your child which in my opinion is the most important.

Thank you - to everyone who has taken time to reply to this thread, I really appreciate it.

So I have ruled out waiting until Sept and have found two private paeds who will look at ASD/ADHD and DCD(dyspraxia) in one hit. We live 2.5 hours from London so are keen to get it all done in one go and the two paeds both offer ADOS with SALT at the assessment so would cover the multi-disc approach. I am just floundering over which to go with as my ability to make a decision seems paralysed by how much money it costs!

Studnik obviously focuses on autism and offers the additional 3Di parent interview and what he calls the gold standard assessment which can drill down with high functioning/ well masked cases (which is DS) and also offers a separate developmental assessment which can look at the DCD/dyspraxia

the other -Chelvi Kukendrarajah - has amazing reviews online & I feel confident she will look at all the whole picture in one go whilst having ADOS as supporting evidence. DS would probably respond better to her (likes kind females!) so it will likely be less stressful but equally if he is anxious he will show his true colours which is what we want rather than masking. She is half the price of Studnik as less time/assessments involved. And I am worried Studnik could add in needing to see DS at school as he said if it wasn’t possible to diagnose then this would be needed - just as you experienced @OrangesNectarines. Studnik can see us on really convenient dates (childcare options for youngest etc), Kukendrarajah I haven’t heard back regarding a date for two weeks now.

Tough one. Sorry am rambling - it’s helpful to process it all.
Thanks again for your thoughts x