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Is this usual? Am I wrong to feel wronged?

(20 Posts)
Schmedz Tue 26-Feb-13 21:59:49

Thanks. Will ask at the next appointment. In the initial stages of testing still so hopefully it can be slotted in to the assessment process easily.
Thanks again....you have no idea the relief I feel to finally feel I am speaking to experts that can actually help my DD!

ilikemysleep Mon 25-Feb-13 22:18:15

Sorry, missed this. I am not sure what you mean by NLDP, sorry. What I would ask for is a separate assessment of her reading comprehension when she is reading silently (ie standard approach) and when she is allowed to read aloud. I have known very few British children get the NVLD label as their 'sole' label, normally they get autism spectrum which is fair enough but the NVLD profile is important to know about because children with autism but non-verbal difficulties need a much more verbally mediated than visually mediated curriculum - use of speech, verbal rehearsal etc etc. So I would ask psych whether they should be adopting those sorts of approaches to support her rather than 'taditional' visual approaches (rather than get hung up about what specific name they give it). If she does need an auditory and verbally mediated curriculum you may be able to get a private room for exams so she can read the questions aloud, that sort of thing.

Schmedz Sun 24-Feb-13 19:03:29

Hopeful bump??

Schmedz Sat 23-Feb-13 09:43:35

That is spookily like my DD!! Her WISC showed slightly above average intelligence, when she works on her homework at home she is ALWAYS reading it out loud (saying it helps her think), is an amazing musician when it comes to hearing something and playing from memory but struggles to read the music, when she was 2 she would recite her favourite stories so that it was as if she was 'reading' the books, she can accurately complete maths problems when practising a particular skill but generally does poorly on assessments.
Do you think I could ask her current psychologist to do the NLDP with her?

ilikemysleep Fri 22-Feb-13 23:20:21

Well, clinical psychs can also do WISC (as you know!) so it's possible that they might repeat it as part of the new process. What your DD's scores probably suggest is that she is very susceptible to external influence on performance.

Have you had a look at the Non-verbal Learning Difficulties Profile? It's a subset of autistic people who DO have a particular cognitive profile (!) where non-verbal reasoning is significantly impaired compared to verbal reasoning. It's important to identify because this subset of people with autism do not respond best to a visually prompted curriculum as is usually the standard recommendation for autism spectrum, but need a verbally and orally mediated curriculum. For example one young man I knew raised his reading comprehension score by 3 years on standardised testing by simply being allowed to read the passage aloud instead of in his head before answering questions on it - he needed the auditory information from reading aloud to improve his comprehension. Crucial to know in exams, for example...

www.greatschools.org/special-education/LD-ADHD/907-nonverbal-learning-disabilities.gs

Schmedz Fri 22-Feb-13 22:27:55

I certainly am also thrilled about the current assessment opportunity! Interesting about the WISC profiles all being so different. I am sure the diagnosis was also made in conjunction with the sessions and initial discussions about her childhood history as well as observing DD in the sessions and talking with her, but she definitely led us to believe that there was a typical ASD profile on that test.
Spikiness seems to be confirmed with VR and NVR tests, but her results are so erratic - in one set of exams she scored almost the same (very low), on another better in VR (ok) but very poor in NVR, and in one VR test done for an entrance exam (which interestingly was the only one to be done online and not multiple choice pencil/paper testing) her standardised score was 140 which is apparently about as high as you can get! Recent levelling in English/maths is 5c and 4a respectively, but she does tend to find the problem solving aspects of maths tricky.
Could it be that she needs EdPsych testing well as the autism diagnosis process or will any learning difficulties reveal themselves during the latter? It would be really handy to be armed for her entry into senior school this September!
Thanks again for sharing your time and expertise so readily.

ilikemysleep Fri 22-Feb-13 20:17:49

A large part of my job is doing WISc profiles on an autism diagnostic team. There is no classic ASD pattern. Really, truly. A cognitive assessment is part of NICE guidelines because knowing a young person's profile can contribute to understanding their needs. However a WISc is NEVER in and of itself diagnostic. It is occasionally un-diagnostic. For example if it shows up severe language difficulties or severe learning difficulties which were previously undiagnosed and which are in themselves sufficient to explain a child's presentation (eg many kids with severe learning needs will naturally have significantly delayed social skills as part of their overall delay). I have seen ASD kids who have scores that are uniformly high, uniformly low, spikey and not spikey. There is no ASD profile. People have looked for them but other than a tendency to have rather better reading skills than might have been suggested from IQ in many cases, there is no reliable pattern of scores.

Course it doesn't mean your DD isn't autistic, sounds like she probably is. But I'm glad she is getting the opportunity for a best practice process.

Schmedz Fri 22-Feb-13 17:51:12

Ilikemysleep...I am also concerned about the support for DDs diagnosis which is why we are now using the NHS FACT psychologist who, in our second session did begin the Diagnostic questionnaire.
I long suspected Aspergers before it was confirmed with this psychologist, who conferred with colleagues about the WISC profile (very spiky!) that it was a classic pattern for ASD. I am, however, open to any findings that result from the latest process, which I already feel is more reliable.
Just so upset about the fact we have paid out SOOOOO much money for what is potentially not even a fully accurate diagnosis and no support!

ilikemysleep Fri 22-Feb-13 08:26:23

I would be fantastically concerned that she apparently diagnosed aspergers from a WISC!!! Whether she is correct or not in that your dd has aspergers, let me stress this loud and clear, DOING A WISC IS NOT THE WAY TO ASSESS AUTISM. There is no 'diagnostic profile' and no way to tell by looking at an iq test to identify whether a young person has autism. I wonder if this has contributed at all to her reluctance to provide a written report on this part of her assessment?

NICE has published guidelines on best practice to assess autism. It includes multi d assessment, cognitive assessment, detailed history, observation in 2 settings, and ados.

MareeyaDolores Thu 21-Feb-13 22:15:34

Suggest a terse email asking her please could she 'clarify' exactly what she told nhs lady, as you have indirectly been informed that you owe money for which you've never been invoiced.

MareeyaDolores Thu 21-Feb-13 22:12:27

Would suggest pursuing the information first, and the complaint afterwards if necessary.

The last thing you want when you need an urgent report, is to simultaneously tie the person up in red tape trying to defend themselves against an allegation (however reasonable).

RememberTheGoodTimes Thu 21-Feb-13 21:47:08

Yep, any specialist worth their salt would give you a written report (Our SALT actually discuss the findings with me first, sent me a proposal for the report to be sure I was happy with the way she presented things and avoid any mistakes).
Also I am pretty sure she would have had the duty to keep some files with all the records of the tests as a legal requirement. These are some guidelines for psychologists not sure whether it will apply in that form to the HCP you've seen but she should be following very similar guidelines.

Good idea re complain. I would also explain your issue re access to the data to see if they move things along on their side too.

Schmedz Thu 21-Feb-13 16:23:34

Wow..that is fantastically helpful. Thank you!

What Lougle said. You are entitled by law to every piece of information that this SALT holds on you and your ds.

lougle Thu 21-Feb-13 08:33:02
Schmedz Thu 21-Feb-13 08:01:20

What is that, lougie?

lougle Thu 21-Feb-13 07:14:16

Can you do a subject access request?

Schmedz Thu 21-Feb-13 00:28:44

She did the report and fed back verbally after about the 5th or 6th appointment. There were at least the same amount of appointments after that and at no stage of this process were we asked to pay for a report. We did, however, pay for the testing which I am now led to understand includes the report. Even after we had our final appointment which was well over a year ago, we were never given an unpaid bill reminder or had any payment requested...this is because we paid every invoice we were given.
My main concern is that she would lie about it to another professional! And also given the fact that notes were taken on various sheets of paper and there was never a file which she brought to the appointments, I am wondering if any notes actually exist or can be found anymore...
Hubby and I have written an email to express our concerns and also that we will be contacting the professional organisation to which she belongs to complain. Perhaps there was a misunderstanding about what we were actually paying for when the testing was done and it didn't actually include a report (although the report is what everyone asks for when I explain diagnosis) but the lying is unprofessional and utterly wrong. I still can't quite believe this is what was said.

bjkmummy Wed 20-Feb-13 22:57:23

i dont know what to say - im wondering if after doing the assessments, she didnt write them up properly as this in understand can take quite a lot of time and no doubt she would have then charged you for the full report so maybe that what she means that you havent paid the bill - not because you have done anything wrong but if she is now to write up the report properly then she expects to be paid for it. im not sure where you stand about getting the information from her with her being a private psychologist. im guessing she must belong to a professional body of some kind who you could contact for advice maybe?

Schmedz Wed 20-Feb-13 22:35:24

After getting frustrated with trying to get our GP to take concerns about my DD seriously, we eventually sought help from a private clinical psychologist. At nearly £100 for an hourly session it was something we could ill afford, but the situation with DDs self esteem and social difficulties needed urgent attention!
After initial consultations talking through her developmental history, psychometric testing was suggested and she was assessed using WISC IV. This showed a typically ASD profile and she was duly diagnosed as having Asperger Syndrome. A visit to her new school was organised (for which we paid) and several sessions with my daughter and the psychologist followed which seemed to generally be 'chats' about her experience at school (and the psychologist's own children!) and if she had any concerns or difficult situations and my DD became increasingly reluctant to discuss her emotions and feelings and reactions to situations and would just end up lying on the couch under cushions refusing to interact. Apart from her failure to engage other the conversations, we did increasingly feel that there was no plan of action to particularly help her develop social skills and that the (expensive) discussions were not fruitful.
We stopped sessions citing financial difficulty in continuing to pay but also concern that no concrete plan of action, support group access or any other definite avenues for helping her address the difficulties of having AS were being developed. It was also blindingly obvious that with DD refusing to interact, the sessions were becoming pointless.

Since then we have discovered through the NAS that not having an official NHS diagnosis precludes her for accessing lots of support which is available to other ASD children. Our GP referred us on the basis of the diagnosis suggested by the private psychologist and we have recently met with someone from the FACT team twice, once for an initial meeting to decide course of action and most recently to complete a formal Diagnostic Assessment.
I am extremely concerned that when the NHS psychologist contacted the private psychologist, she found it very difficult to get a response and impossible to obtain any of the notes that were taken during the numerous sessions with my DD, despite eventually receiving confirmation that she would send 'some' information. We also never received a report detailing the WISC test results, which surprised the NHS psychologist, and when she requested it from the private psychologist was told that the private psychologist had never written it up because we didn't pay our last bill, which is a BLATANT lie. Partly because we did (and have paid her a total of around £1500 for all the appointments) and partly because the testing took place in early sessions and numerous appointments were held after we were informed of the test results ( no report ever given to us in writing, just verbal feedback). The 'report' we have used when discussing the diagnosis with school is a copy of the letter sent to our GP outlining general conclusions and summarising outcomes of the WISC.

Also, when we had not organised appointments for a while with the private psychologist (mutually agreed due to DDs noncompliance) and wrote to suggest that we needed to meet to create a plan of action for us to support our DD with her ongoing difficulties, she urged us to make another appointment with her to talk it through - at no stage did she request payment for unpaid bills, and at no stage in the past year since stopping appointments with have we ever received a reminder to pay or notice of overdue bill (when all invoices for payments after appointments were always received within hours!) which is why I was so shocked to hear what had been told to the NHS psychologist.

I am just pleased our DD is now on the path to thorough and adequate diagnostic procedure and will have access to the support she needs (at long last). However, I am infuriated that after so much trust in the private psychologist it appears we have been somewhat 'taken for a ride'.
Can she legally refuse to share information about my daughter (especially information for which we have paid so much money?). Am I wrong to feel she has acted unprofessionally ?
Sorry this is so long. I genuinely would love some advice on what to do!

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