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PDA assessment at Elizabeth Newson Centre at Nottingham
  • Hi, has anyone had an assessment completed at this centre? What benefits or help did it bring?
  • Alien
    Posts: 26
    Hi Karen.

    I haven't been to the Elizabeth Newson Centre, but as you're probably waiting for an answer, this might be helpful.

    Just this week we went to the Lorna Wing Centre, after spending ages trying to get CAMHS to take us seriously and going round in circles and being underwhelmed with their knowledge.

    It was a good experience for us. We did the DISCO and our daughter had an ADOS assessment, as well as a processing assessment (we already have a speech and language report, so they didn't do that, but would have done had it been required). There was also some further play-based assessment. She absolutely loved the day (fortunately we were in heading off the back of a good night's sleep).

    It's a little early to say what benefits we've got, but we went along without any existing diagnosis (for our six-year-old daughter) - we now have a diagnosis of autism spectrum/PDA from people that really do know what they're talking about.

    Our daughter has been having psychotherapy since June, which we've never been that comfortable with. We're now able to make a more informed decision that we should be looking to alter that.

    We were unaware of the processing difficulties our daughter has, so that should help school.

    The diagnosis and guidance also means we can request support from the outreach service of our local autism specialist school (who have already met us). And we're in the process of putting together our school-led ECHP application, so the report we'll receive will hopefully help to secure the right provision and back up the information we've been providing on PDA guidance for educational settings (our daughter is in a mainstream infant school, but is having an incredibly difficult time of it).

    She has also been hungry to know why she finds many things so much more difficult than other people/why she can't control some of her impulses - she now has some answers, which she has grabbed onto with both hands (we've not spoken with her about PDA, merely about autism). It also means we can try to increase awareness within our local CAMHS.

    I imagine the experience in Nottingham would be somewhat similar to ours at the LWC, but obviously I can't say for certain.

    I hope that helps in some way. Best of luck!
  • Thank u so much for your detailed reply Alien. We have been frustrated by camhs. We'v been to our doctors before and not been successful with funding for the Elizabeth Newson Centre. We'r going to try again, as need the relevant people to understand the issues my daughter and us as a family face on a daily basis. Not just for now, but for her lifetime ahead. Its encouraging to hear u have been successful and spurs me on to keep pushing along. Keep the faith! Xx
  • webbwebb
    Posts: 2,569
    I have spoken to more than a dozen Parents who have taken their child to the ENC for an assessment.
    They have all said:-
    It is thorough.
    Involves a Clinical Psychologist, Speech and Language Therapist and a Playworker (at the very least).
    The child plays with the Playworker who starts off by allowing the child to do what they want, then very gradually tries to persuade the child to do other things ie increasing small requests/demands.
    The session lasts a few hours.
    The play session is videoed so that other professionals can witness the childs behaviour.
    The Play room has a 2 way mirror so that the Parents can see everything that is happening.
    The Parents speak with the Psychologist.
    The whole appointment can last up to 4/5 hrs.

    Then the professionals that have assessed the child send a thorough report and diagnosis in writing to the Parents (sometimes this can take quite a few weeks!)

    The ENC are an assessment centre for all ASD's not just PDA.
    The report is very helpful in that Parents often say they understand their child so much better and in helping other local professionals to understand your child (if they will listen of course).

    Hope this helps.
  • We have been to ENC with our daughter & have an ASD PDA diagnosis. Unfortunately, we didn't have any luck getting funding & had to pay for the assessment ourselves. We are waiting for a meeting with the school/paediatrician etc. Hopefully we will be able to get a better understanding of our childs needs but we do seem to be having to find out everything ourselves. Sometimes feels like one brick wall after another! Wishing you the best of luck!
  • Alien
    Posts: 26
    Sorry, I should have been clear - we had to self-fund too. Our GP was unable to help with the other places we would have considered (the Maudsley (recommended by the autism specialist outreach team who observed daughter in class) or GOSH, as these are 'tertiary' care centres, where the referral would have needed to have come from CAMHS, which even if we could have got them to agree to doing so, would not have come for goodness knows how long down the line. The LWC did mention to us that they're looking to secure some grants for parents at some point in the future, but I don't think these sounded imminent.
  • Thanks Webb, I feel it would be of benefit to have the assessment completed. I have been told by ENC that evidence from others would be accepted too, so they don't just use the observations on the day. I shall go down that route.
  • Hi Alien, I did think ud received funding. Ta for the clarification. We have tried before with camhs, but they refused to carry out a physiological assessment, so we hit a brick wall. I certainly won't give up as my daughter needs help. Ta for your posting :-)
  • Hi, I'm new here and I'm here as an extremely concerned nana. After a long wait my 10 year old grandson has been diagnosed with ASD but we're sure that this doesn't fully explain his difficulties. PDA seems to fit perfectly ! We were advised at the early stages that a private assessment would not be accepted by the LA to provide him with educational support so we waited. But we're very concerned at how much time is being lost while we wait yet again for any intervention and his behaviours are deteriorating further.We need to know what strategies we need to use as a family to help him.
    I see on the forum that some of you have paid privately for assessment at Elizabeth Newson Centre and I'm wondering how much the assessment would cost, perhaps you could PM me ?
    I've also wondered whether having a dog at our house could be beneficial or just add to the problem and I've read with interest the thread on pets !!
    I'm in awe at how you parents cope 24/7 and how lucky your children are to have you - keep up the good work ! :-)
  • Our LEA have accepted our private diagnosis. I think the new law may have helped this.
  • That's encouraging news sinkorswim thanks :-)
  • Alien
    Posts: 26
    Hi all.

    Our LA appears to have accepted the diagnosis, but only after we objected to their reservations in the strongest terms and also made our MP aware of the situation. The Lorna Wing Centre cost a couple of thousand. Ouch! But worth it (and we were helped there by a concerned nana too).

    As an update to the above, our daughter has been doing so much better in school since we stopped seeing CAMHS, she was made aware of her autism, and the school adopted the PDA guidelines more fully and also addressed some of her sensory issues. We couldn't really have asked for more from the LWC report.

    Hope that helps.

    Oh, and regarding a pet, we did get a kitten, the result of which has been a mixed one (due mostly to sensory issues/personal boundaries). For us, the benefits outweigh the downsides. (We knew a dog would have been less risky and perhaps easier for our daughter to get to understand, but opted for the cat for some other reasons too.)
  • webbwebb
    Posts: 2,569
    Hi nanatee

    It is lovely to hear from you and know that their are some very caring, loving grandparents trying to help their children raise their grandchildren :)

    I just want to use this senario to illustrate my point.
    If we went to see a Doctor privately, through private medical insurance and he said you have cancer,(obviously the doctor would be qualified to make this diagnosis, would have donw some "tests" and written a report), then your private medical ins didn't cover you for treatment, you would go to the NHS for your treatment.
    The NHS wouldn't say "we can't accept this diagnosis" - they would have the test results and report and wouls start to give you the treatment/support necessary.

    I think the LA are trying to just dismiss his Special Needs, hope you don't get a diagnosis, so that they don't have to provide support to your granchild!

    I would say, get a private diagnosis, send the Diagnosis Report to your Education Dept and then call a meeting and ask for support to be put in place at school.
    Sometimes Parents have to ask for an Education, Health and Care Plan (Legal Document)after the private diagnosis, as some LA's will not put in the required support until the child has a EHC Plan.

    The Assessment at the ENC was £2,600 but I have heard that it has risen in costs over the past 2 years and may now be £3,400 ???
    The Assessment is done by expert professionals ie Child Psychologist trained and experienced in ASD and PDA, plus a Sppech and Language Therapist and an experienced Play Therapist.

    If any LA refused to knowledge the report done by a Child Psychologist etc, I would approach a SEN Solicitor or an ASD/PDA Trained Private Educational Psychologist.

    Thank you for all your kind words :)
  • Many thanks for your responses, I've only just worked out how to pick up replies on this Forum (IT and PDA both new learning curves for me :-( ) It really does help to hear of your experiences and to get a 'ball park' figure for possible costs of a private assessment before promising help.

    Keep up the good work - your children will thank you one day believe me :-)
  • Dear Nanatee If you were to go to a tribunal appeal (in regards to provision in an Education Health Care plan for example) the tribunal panel would accept a private report providing it was from a professional with the right qualifications and experience to undertake such as assessment...

    When your grandson received his diagnosis was he given a care plan (advice/ suggested follow up work with him? If so then do the strategies/ aupport suggested (in a report, or verbally) seem to be more suited to a child with Asperger syndrome or high functioning autism and not fitting with PDA strategies?

    If you can get a professional in your area to acknowledge that a different type of approach is needed to help him in school/ at home then you might not need to seek a further assessment.

    You may be already aware but there is no follow up given by the ENC. My son was assessed there some years ago and diagnosed with PDA. It was a very thorough assessment and the excellent and detailed report is useful in highlighting some of the things which may help him, however if the school are close minded they may not take on the advice anyway whether or not that private report is given to them.

    How are your local authority services (like educational psychology team) at recognising and supporting pupils with PDA, or autism with demand avoidance?

    I say this because my younger son has a diagnosis of autism spectrum disorder. He has always been demand avoidant to some degree at home but as we are attuned to PDA already due to having an older son with the diagnosis; we were well used to adjusting ourselves to suit and he flew under the radar at school initially. Problems increased as he moved through the years from reception to Y2, and when he moved to Y3 things changed drastically at school (and not in a good way). He spent ALL his day avoiding doing anything but what he wanted to, despite full time 1:1. The educational psychologist assessed him and produced a report which was used for input into his statement. Some of the comments regarding his behaviour were so 'pda' and the strategies and approaches suggested by her (and by the autism team in previous years) fitted very well for a child with PDA. So for me there was not a desperate need to go to get a diagnosis from the ENC for him in the same way it was for my older son (who after 3 years of assessments had no diagnosis as he didn't tick enough boxes for autism and thus had mainly been deemed a 'naughty boy'
    We are lucky in that other than the diagnostic service, the other local authority services do recognise and acknowledge PDA and so both my children can access the same services such as the autism youth club my son goes to, and the short breaks services and the autism communication team (who work in schools to help them support young people).

    So what I am saying is could either the person who made the diagnosis in the first place be consulted about whether she would be prepared to read the booklet for clinicians http://www.pdasociety.org.uk/files/download/c4bc6060e7986af and consider, based on your evidence, as to whether they would add 'autism and demand avoidance' to his diagnosis, and make recommendations that suited his individual needs but which were based on a more PDA friendly approach. Or see if your local authority services recgonise PDA and would be prepared to advise the school on suitable strategies?

    I hope this makes sense! I am not trying to make suggestions that ENC, NAS Lorna Wing Centre or another private assessment by someone suitably knowledgable is not worthwhile, because of course they can be absolutely essential. I know from my experience with my older son.

    There may be a waiting list and most GP's will not refer to these places on the NHS due to cost implications, so its a very hard and long battle to get there (not to mention if you self fund you need to consider waiting list time as well - it is quite long for ENC) so even if you put your name on waiting list for ENC or another service, it may be worthwhile asking question of the CAMHS/ local authority services currently involved in his care (or who may be in the future) to see if they are willing to listen and support him in the right way with his current autism diagnosis.

    Good luck, Debra
  • sinkorswim which new law do you mean? Are you referring to the SEN Code of practice? The NHS is already supposed to accept private diagnoses, but they will often fob you off and say they don't:

    http://www.nhs.uk/chq/Pages/2572.aspx?CategoryID=96&SubCategoryID=226
    http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_096576.pdf

    Also NHS NICE Guidelines CG128 for assessment and diagnosis of autism in children nowhere state that diagnoses must be NHS ones.
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