Finally got an appointment with Daphne Keen!!

[Soutty]

Hi all,

I posted on here a while ago about my frustration with the way that the assessment procedure with my son seems to be going nowhere. He hasn't had an appointment with the speech therapist since October although whenever I phone they say he hasn't been forgotten and despite being confirmed as having a 2 year delay in expressive speech when he saw the paed in August, I've had no appointments since despite being reassured that he's in the system and hasn't been forgotten.

Luckily for our son, we are able to afford to pay for private assessments and next week he sees the speech therapist and finally, finally, finally, after weeks of badgering her secretary on the phone we have a date for him to be assessed by Daphne Keen. Not until July but still I am just so relieved that finally he will be assessed by someone who knows what they are talking about.

My son starts school in September so none of these reports will be through in time for me to get a statement for him in time for reception but with any luck we'll have got one by the time he goes into Year 1.

Anyone on here seen Daphne Keen? What's she like as a person? What's the assessment procedure like? I know it takes 2 hours but apart from that I don't really know what to expect - not that I intend to school him for it of course as clearly that would render the whole thing pointless...

Our pead said that our local CDC are great with developmental delays but rubbish with developmental disorders! Which fills me with no hope of getting a dx for dd as she isn't delayed. He's right in that many of the kids there have severe delays and conditions such as CP alongisde autistic traits but there are no kids with AS HFA or plain dyspraxia. I hate living in south west sometimes

Hello

Imogen I've just looked at Lorna wing centre its run by national autistic society but doesn't take private patients. I've just emailed maudsley hosp, GOSH, Daphne keen, priory hosp, Oaasis and NAS to ask them for ideas of private practices! Anyone any other ideas??

We went to see DK last September when DS1 had just started Year One. As others have said she really understood him and was able to untangle some of the conflicting and confusing traits he has. He came away with a diagnosis of Asperger's and borderline ADD.

I really liked her and she treated me like a real person complete with a fully functioning brain which is more than can be said for some of the numpties we have come across!

There's Dr Baird at the Newcommen centre, Guys hospital London for those who need a tertiary referral but get blocked by local cahms for GOSH/the maudsley on the NHS. No idea how good they are as a friend went there thinking her kid had asd and came away with a diagnosis of speech delay & bipolar for her 5 year old.

Thanks for all ideas guys and the warning about her secretary!

Imogen I've been in touch with the Portland hosp this morn, I emailed late last night and they replied first thing this morn. The doctor has been emailing me!! 250 quid for an ados test!

Portland is central London so we will have to train it from devon! I tried ringing DK this morn AMD got answerphone so left message. I'll try her again later. Not sure really, ados will pick up aspergers and hfa

DK doesn't do the ADos, I don't think. I'd say she was more detailed.

Just catching up with this thread. I really did have to hound her secretary until it was more hassle for her to keep making up excuses than it was for her to make an appointment and send me the forms out.

I am going to ask a question now that I probably shouldn't ask. I am not sure that DS has autism, particularly following his diagnosis of SLI. However, I am also far from certain that he hasn't got autism. I am making lots of lists of the negatives to take to DK eg his obsession with numbers, his controlling behaviour etc. I had intended to not mention the positives - eg he played a joke on his sister the other day (sat in her chair and said "I'm going to eat your breakfast" and then jumped off it killing himself laughing when she said "hey no that's my breakfast" and he said "not really!"). Should I include the positives do you think?

I don't like being dishonest but equally there is no point going there and getting carried away eulogising about all his positives when it's the negatives that he needs help with and will still need help with when we walk away from the appointment.

Leningrad and others - were you relentlessly negative or completely honest about your DCs when you saw DK? I imagine a lot of the reasoning for her diagnosis is based on our answers as parents rather than pure observation. Is there a test she does on the children when they go or does she just observe? The SLI diagnosis was based more on an actual test than observation I think. Seeing the same SALT tomorrow as she is coming to give DS speech therapy and to discuss her report. Will be interesting to see if she still thinks SLI. DS's VBA consultant doesn't agree with her (although she is not qualified to diagnose anything she does have a lot of experience with autistic children and her opinion is that DS is borderline at least) and so I am feeling very confused atm.

Just want to flipping know what's wrong so I can get him the best help and apply for his statement. Roll on end of July.

Hmmm my dd is rather complex and not straight forward. I've emailed secretary again! Rung again no reply, says not to ring the st Georges number so i won't. Have told her we can take a cancellation!

Tbh I'd be honest. She's very good herself at uncovering the positives in what you think are negatives and also finding the difficulties that may be present in the positives. I woukd tell her about the joke if it is relevant at the time. She will delve into the details that she needs to understand what is going on,

You don't want a dx based on limited information as you'll always wonder if it is accurate.

I don't think anyone wants to be personal on here, but yes the secretary is a challenge. She is her NHS secretary!

The only way you will get through Chundle is to ring the St Georges number. That's what I did.

Good advice Justaboutisnowakiwi. I wasn't intending on bringing in a list of positives - just wondering if I should err on the side of negativity when answering her questions iyswim.

I know that his obsession with numbers is not a really positive sign that he's going to be great at maths. It's the biggest concern that I have as it isn't something that can be explained away by a language disorder as the other stuff can.