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Suffolk based? Problems with ASD resources? I need your help.

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Hi people,


Have you had difficulty in the past few years getting assessment; help; counselling, or anything ASD related, in the Suffolk, and especially Bury St Edmunds area? Do you think the area lacks ASD resources? If so, I really need your help.


I’m a professional counsellor/psychotherapist in private practice with over 25 years’ experience. I work mainly from The Human Givens perspective (Look up caetextia!) and am also certified to use the 3Di assessment tool in clinic. Approximately half of my time is spent working with ASD related cases. I am in the process of setting up a new clinic near Bury St Edmunds in Suffolk.


In order to do this I have to apply to the local planning authority for change of use of the existing building to use it as a clinic. I approached a couple of the better-known ASD charities, and the Local Authority ASD-services to ask them for some written support to use in my application to the St Edmundsbury planning office: specifically to show that there was a need for a wider choice of resources for all people affected by ASD and related issues (meaning partners/parents/children as well as those directly on the spectrum) in the Bury/Suffolk area. To my astonishment, I was told that that there was no need for private clinics because all ASD in the area was completely covered; that nobody had to wait unduly for assessment; that the NHS, CAMHS, SENCO, dealt with it all; etc., etc.


My reaction? Probably the same as yours: Shock and disbelief: then laughter. I deal daily with people who tell me the exact opposite!


So please, if you’ve suffered delays, setbacks, refusal to assess; whatever, then this is your opportunity to let the Local Authority (and, sadly/surprisingly, those charities) know the reality. It would really help our case if you could give a brief outline of what the issues were/are. Feel free to PM me if you prefer. There is a degree of urgency here.


Thanks very much for taking the time to read this.


My kindest regards to you all in your endeavours.


Bluebottle, D.Hyp., HG.Dip.P., MA(PsychT).

Edited by Bluebottle

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Hullo Bluebottle,


I came on here this morning to talk about my own issues but your post caught my eye. I'm not sure i can be of much help to what you are asking for but i have also heard of people in Suffolk discovering that there is no virtually no service for ASD diagnosis, support etc. especially for teenagers and adults.


Perhaps i should give some more background info...

I was diagnosed with AS last year (although obviously i was born with it) and have also just completed my PG Dip in person-centred counselling at the UEA, i also live in Norfolk. Now I am a newly qualified therapist (MBACP) I was really drawn to your comments about spending half of your time dealing with people affected by ASD and related issues. Because of my insight into such issues i am looking to develop my career as a therapist in this area and hopefully do some research on it when i come to do my MA in a couple of years. My personal experience of AS and my different way of thinking really helps me empathise with some of my AS clients and i feel that i have a unique perspective on therapy and ASD.


I was wondering how you find the Human Givens Approach works for your clients on the spectrum? BTW i was not aware of this approach before i read your post but it sounds very very interesting.


One of my classmates at UEA has a young teenage son she strongly suspects of being AS and she has also reported to me the lack of service in Suffolk, perhaps she might be able to do something to help, i'll email her the link to your post.


I wish you the best of luck in setting up your new clinic.

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Hi Bluebottle,


I am experiencing exactly the problems you mention. We live in Felixstowe. I have a 12 yr old son with HFA who has received a little, time-limited help since diagnosis at age 8, though this has now ceased as far as the NHS is concerned as they have signed him off; when problems arise we now rely on suggestions from Autism Suffolk - this also will cease when he turns 14. We have finally managed to get the Ed Psych to accept him on the caseload but she warns that she will not work with him but with his teachers, so no direct assistance here either. However this is what we have come to expect and we struggle on; thankfully he is at a good school where teachers are made aware of his problems. A much bigger problem exists for my 14 yr old daughter, who we and her teachers (same school) suspect has Aspergers. She has been the subject of a CAF process following repeated social problems at school and their inability to deal with her exceptional IQ (she joined Mensa at age 12) and her GP has requested referral to suffolk CAMHS, supported by school, which was refused on the grounds that Suffolk CAMHS has "no mandate to deal with cases of ASD". They referred back to Child and Family services, who refuse to accept anyone for potential diagnosis past the age of 11 (indeed they signed off my diagnosed son when he hit 11, just before a major upheaval in his life - transitioning to high school.)

The GP will not refer out of county as it means a major hit on the group surgery budget. The National centres for ASD/HFA will only accept a CAMHS referral so that is no option.

We are willing to pay for a private assessment although we expect the LEA to refuse to accept it, even tho they are not presenting any alternative.

So yes I think we have been severely let down by the NHS in Suffolk and I am happy for you to use this case to forward your own. If you could contact me directly to discuss potential assessment costs etc i would be very interested -assuming you could do so without requiring a CAMHS referral of course.

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Hi tom'smom,


I live in Norfolk and have had similar problems.


Is your daughter on school action or school action plus? If you are having CAF's who is attending these meetings? As she is struggling I would ask the LA for a statutory assessment of her special educational needs. They may refuse but you can appeal and in the mean time they will ask for an assessment from EP.


Personally I would also be concerned about your son. My son was 'coping' and was undiagnosed when he went to a large mainstream secondary school. He then school refused for 5 terms and it has taken this long to get the appropriate placement although not attending school yet. If help is time limited it sounds like he also needs an assessment from LA.


As regards CAMHS, Suffolk and Norfolk are amalgamated. I had the same problem with GP referral being refused by CAMHS. Paediatrician then referred and took a further 3 months. I then had to put in complaint to PALS. Paediatrician wrote to children's commissioner for Norfolk. CAMHS now have a neurodevelopmental team. Do not be fobbed off by GP. Your children's needs are your priority and should be theirs not the budget. I cannot stress enough how important early intervention is. Keep asking.

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Thanks for your suggestions. The SEN dept at school have asked for LEA assessment for both but have been refused. Eventually They agreed to take my son onto the casebook as he has a diagnosis but they won't consider taking my daughter. I may try for second opinion at GPs, the problem is they have such high staff turnover that we have no one who has really got any idea what her history has been; until now we never really considered AS to be the problem and she's not sick often so her medical records don't show anything useful. Current GP has written to CAMHS, as have school, but CAMHS say they are not commissioned to provide services for ASD so referred us back to the clinical commissioning manager. GP and school wrote to her too but there has been no reply after several months and a follow up request from GP. The GP group Practice routinely turns down all but emergency referrals out of county so that is out of the individual doctor's hands.


From talking to SEN staff and head of pastoral care at the school it seems they are aware of this diagnosis/care gap for autism/Aspergers teens locally and it is causing them as much of a headache as it is me. Even the local NAS staff are telling me private is the only option, or move to Essex.

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Unless you put a complaint in to PALS the commissioning group will continue to think there is not a need. As Norfolk and Suffolk CAMHS are joined I would be asking why this service (neurodevelopmental) is now available in Norfolk and not Suffolk. I would also ask what diagnostic pathway they are following and demand appropriate referrals.


When did the school request assessment? As a parent you are better to request them as you have the right to appeal whilst the school do not.

Edited by cathcart3303

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Many local authorities automatically refuse a request for an assessment for a Statement. They do that to weed out parents who do not know how to appeal, or who do not feel they can go to a tribunal themselves. But at a tribunal all these 'criteria' that the LA and NHS have are trumped by SEN educational law.


We too found it hard to get any support via school or the NHS. We ended up going to two educational tribunals. One in 2009 when a Statement was eventually finalised and was worded in such a way by the LA that it was not legally binding. Then we went again in 2011 when my son was supposed to be starting year 6 primary [but had been out of school for all of year 5].


Due to the fact that we had evidence in writing of how the LA/school did not meet his needs arising from his ASD and also Dyslexia and Auditory Processing DIsorder and difficulties with short term and working memory, and how the NHS also did not and could not meet his therapy needs [for both speech and language therapy and social communication therapy and also for Dyspraxia and Sensory processing Disorder] we won a place at an independent ASD school, part of the SENAD group.


So the LA pays his £50K pa fees to go there. We alsowon an additional £10K a year for a specialist dyslexia teacher to see him 1:1 for 3 hours a week. This school has SALT and OT on site, as well as a child psychologist [after years of not coping my son also developed an Anxiety Disorder and OCD]. He is around average cognitive ability with some exceptional skills in some areas and poor functioning in others. He is doing brilliantly now at this school.


I also finally managed to get a CAF, and for Social Services to eventually agree to fund one nights respite at his current school. They delayed putting this into place, so I complained to the LA and then to the Local Governments Ombudsman, who found in our favour and made the LA pay us compensation.


What I am saying is that you should not listen to what the LA or NHS is telling you. That is their criteria, specifically put in place to avoid meeting needs and to avoid the costs that that would involve. The law of the land, ie governmental SEN law is different. It is about identifying needs and for provision for each of those needs to be quantified and specified in a Statement of special educational needs.


If the refusal to assess was recent, you have a timescale within which you can appeal that decision. If you have missed that deadline you have to wait 6 months from your initial request for a Statement before you can again request the LA to assess. They may refuse again, which you MUST appeal, or they may assess and then say their opinion is that he does not need a Statement [called a Note in Lieu]. Again you can appeal that decision. When you finally get a 'finalised Statement', it will have been written by the LA in a way to be deliberately wishy washy and not legally binding, and you will definately need to appeal that. It is at this appeal that independent reports are most useful. Again don't get them until you have lodged your appeal because otherwise you give the LA time to re-assess again before the actual tribunal date.


You can also name your parental choice of school - which can be an independent ASD specific school. The LA must go with your parental choice of school unless they can prove it is not a good use of their resources ie. they have another school that is cheaper but can meet ALL the needs and therapy requirements.


There are not lots of these types of schools. The one my son goes to is also a boarding school. My son is a day pupil, but many students come from all over the UK.


The most important thing is getting a Statement and getting the Statement right, because only a Statement is a legally binding document and everything it contains MUST be provided and funded by the LA.

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