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Here you'll find advice from parents and teachers on special needs education.

Original poster

Do you need a formal 'diagnosis' (autism, dyspraxia, dyslexia etc) to be eligible for School Action Plus?

33 replies

amberflower · 22/05/2009 18:24

I am really sorry but this is a long post!

My 4 year old DS is currently in reception (he turns 5 in July) and has recently undergone a multi-agency assessment instigated by his school based on the following concerns:

  • poor fine motor skills specifically pencil control
  • does not seem to concentrate or follow verbal instruction effectively in 'whole class' scenario
  • is quiet and withdrawn in classroom and seems overwhelmed by the 'free flow' atmosphere of reception.

He underwent a 2 part clinical assessment with an OT and SALT, the OT also visited him in school, and a paed observed the very first part of the clinical assessment (she spent the majority of the time talking to us whilst he was being assessed). We suspected he might need additional OT for the fine motor stuff and possibly a little SALT for receptive language (his expressive language and vocabulary is and always has been very good). We suspected mild dyspraxia if anything. They then diagnosed autism. We were shocked and don't agree (though were too gobsmacked to say so during verbal feedback).

I spoke to his teacher later that week and she was very much 'well in order to get the support we want for him for year 1 we had to go through this process, we need it for School Action Plus and I know it's not a nice label to have at the top of his IEP but it can only benefit him in future because no school can ever ignore any future special educational needs he may have'. We're not bothered about whether or not it's a 'nice' label - our point is we believe it is an incorrect label and feel the professionals have been far too quick to slam said label on him just to get a bit of funding.

We are not, by the way, denying that he does need the additional 1-1 help - specifically in literacy and writing - we just don't feel the label is either warranted or fair. I also suspect that when we receive the report they will have pathologised a fair bit of what would generally be perceived as reasonably typical 4 year old behaviour in order to tick enough boxes to get the label, although obviously I may be wrong.

So at present we are awaiting the formal written report from the paed but are planning to challenge and ask for a second opinion which I understand we are within our rights to do. In fact the autism outreach worker I spoke to was very much of the opinion that the process has been flawed and not nearly rigorous enough and we should definitely challenge it, because so much of the behaviour he displays could simply be down to being a fairly unconfident, quiet boy(who is currently an only child at home) who's one of the youngest in the year and finding it all a bit much at the moment.

Some of our concerns about the process - he hasn't been seen by an educational psychologist to our knowledge, we haven't been asked to complete the GARS assessment and neither have the school, a lot of the 'no idea about social communication' stuff feedback seems based on the OT trying to sit him down and engaging him 'in social chat' the very first time she met him when unsurprisingly she got very little from him. The paed is not to my knowledge a specialist, she is a general community paed and I know this because she saw DS for an additional hearing check as a baby!

So our plan is to go back on receipt of the written report and request that we complete the GARS and that, preferably, he is re-assessed by an ed psych specialising in autism. But does that sound unreasonable? My big concern is that his school will simply withdraw the proposed support for him if we start challenging the 'autistic' label. Can you get School Action Plus for a child who has not been 'labelled'?

Thanks for reading! I would be really grateful for any advice/comments.

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juliaw · 09/06/2009 01:04

My sister lives in US and we just visited. Her son has general delay - few words at age 2 - but so clearly social and not autistic compared to my DS3. They get early intervention services if they are assessed at having a 1/3 delay in any area - the whole emphasis is to intervene early and worry about the actual diagnosis later (my nephew is not even being medically assessed but is getting play and speech therapy weekly). However the therapy is part state and part voluntary funded. I think once they get older they start pushing a dx on them because the funding changes then. But there seem to be more PDD dx in USA which seems rare here. But I agree that doesn't mean there isn't over diagnosis - her older son's class has 4 children with an ASD or PDD diagnosis!
Having said all that after posting I found out the US are changing their criteria in 2012! see
www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSM-V-Work-Group-Reports/Neuro developmental-Disorders-Work-Group-Report.aspx - which seems to be changing to a UK pattern of it all being one spectrum rather than separate diagnoses. Despite being quite an easy going child mine would end up with a moderately severe diagnosis on this criteria, which is a bit depressing.

Lingle - I think you can ask the school direct about how their SN funding is broken down ie how much they got and how they spent it (freedom of information and all that). Sometimes you find they actually spent it on while school stuff rather than teaching assistants!

lingle · 07/06/2009 19:30

Overdiagnosis is more of a problem in the States I think. Better than complete ignorance as we used to have. But still it does no favours to children with ASD if other kids who don't have ASD have the same label.

Original poster
amberflower · 07/06/2009 14:25

Juliaw thanks for that....as lingle says, very useful. I will definitely have a look at ICAN, too. I have identified a couple of paeds who have opted to specialise in social communication disorders in children so they would be about as specialist as you could get, I think, for our second opinion. Completely agree too about assessment in the home environment...no idea what the cost is going to be, though!

I also found the comments posted (on mum2fred's thread over on special needs) about how DX is very different here to how it is in the US (i.e. children DX'd as classic/severe ASD here would merely be classed as mild in the States) very interesting. The more I research and read around the subject the more I am starting to suspect that there is, in the UK, an increasing tendency to dish out DX's of ASD to children who would NOT be considered ASD by Greenspan and co. As if that is the only way to ensure that parents can get access to support from the desperately over-worked, cash-strapped and under-resourced LEA/NHS sources....

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lingle · 07/06/2009 13:24

What a useful post- I must find out from some objective source what the actual criteria for statementing are and if we don't meet them what the alternative levels of support are.

My son might qualify as having "severe communication issues" because of his receptive language delay (though he is starting to access the curriculum now so I have my doubts). Is that a term they use and I wonder what constitutes "severe"? Maybe any ASD dx puts you in the severe camp?

There's lots of weird strategising involved. I know one lady who was told always to use the term "austistic" never "aspergers syndrome" even though aspergers is the medical dx.

so strange.

juliaw · 06/06/2009 22:46

Hi just to say that an OT or SALT cannot diagnose autism (our SALT has given us her view when we pushed her - that our son probably was ASD, but quickly said but I can't diagnose). We have a paed and a clinical psychologist (who seems to be the key person in our area) who will confirm the diagnosis. I'm not sure if any of them are expert in autism, a paed is after all just a GP for children. Also the schools budget is supposed to include money for 1:1 - we have been told that schools are supposed to put in the first 15 hours out of their SN budget and only if our child needs more than this would we need a statement. From what you say your child would not need constant 1:1 (eg he is not a danger to himself or others, has no severe communication issues, and can stay on task without constant adult support) and 15 hours of a teaching assistant's time may be plenty. My child is in a private nursery and does not respond to whole class instructions - so they give him individual ones, no big deal! Unless the report sets out much greater needs than you have said I can't see the school getting a statement on that basis anyway so why would a diagnosis be needed at this stage? Has your child made friends and does he play well on 1:1 basis - do you have friends home. That would give you a much better idea if he has any social communication issues. Any proper diagnostic assessment would need to include seeing him at home where he is most comfortable. Have you looked at ICAN? They were offering free assessments recently - especially might be useful if you feel it is not autism but a speech / language issue. Our son wasn't old enough for ICAN unfortunately. Also from our experience Year 1 was much less free flow, mostly sat at tables in small groups and most instructions were written on the board; this would seem to suit your child and may mean he has fewer needs next year than in reception.

lingle · 06/06/2009 14:56

It's great isn't it? Nikos found it. We're going to have a bit of a "book club" thing on him soon.

Original poster
amberflower · 05/06/2009 21:08

and in fact just read through lingle's link in great detail which backs up every concern I have! Thanks so much for that lingle, I will definitely be making use of that!

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Original poster
amberflower · 05/06/2009 21:08

and in fact just read through lingle's link in great detail which backs up every concern I have! Thanks so much for that lingle, I will definitely be making use of that!

OP posts:
Original poster
amberflower · 05/06/2009 20:39

That is an interesting quote lingle! Thanks for the link.

cat64 - I hear what you are saying - hence why I would be asking for a second opinion from a medical - but specialist - paed. My reason for wanting an ed psych assessment and GARS analysis is because an autism specialist I spoke to advised categorically that in DS's case these should certainly have been done before a formal diagnosis, and recommended that we ask for these to be done now. She also agreed that the DX sounded hasty and premature in DS's case, as every 'symptom' he shows could easily be explained by his being a summer-born boy who isn't very confident and isn't that keen on writing/drawing.

His class teacher has advised me that he is never going to need 1:1 support - just a bit of additional 1:1 help with literacy and specifically in the fine motor skills area. Both class teacher and SENCO believe he will be much happier in the more formal environment of year 1 so we will wait and see what happens there.

I appreciate that many parents are in denial about their child's difficulties. I honestly don't think I am - you only have to watch my DS writing and drawing to see he is not where he should be after nearly a year in reception and I fully admit he will benefit from that additional OT work, I welcome it and am grateful for it. And of course a second opinion on ASD may back up that first one, but at the moment I am not confident in the process that has been followed to date, and will at least feel that I have done my best for DS by ensuring we sought advice from a second specialist before accepting the label.

OP posts:
lingle · 05/06/2009 19:13

whoops I pressed the button too soon.

Yes - I deferred DS2's education for a year.

cat64, your post reminds me of my husband's favourite saying about this whole process: "When they say it, it's evidence: when we say it, it's anecdote". You might find the link above interesting to understand better the "in denial" parents you refer to.

lingle · 05/06/2009 18:59

I find this very helpful:

www.icdl.com/distance/webRadio/documents/10-10-2008.pdf

cat64 · 05/06/2009 13:21

This reply has been deleted

Message withdrawn

Original poster
amberflower · 05/06/2009 12:46

Hello

I will definitely keep in touch...this is such a helpful forum and as you say it is nice to talk to people who feel strongly that their child might have specific needs but not 'fit' a certain label.

It sounds as if you are doing absolutely the right thing for your DS. I wish you luck for the playdates! (I will be doing similar, I think). Fine motor skills are definitely our key issue although I would not be surprised if the SALT identifies some receptive language issues for DS as well, although these are mild enough that I honestly can't tell whether he has an issue, or whether he just doesn't listen properly...we will see.

Did I read rightly in your other thread, have you delayed your DS's entry into reception by a year? Sometimes and with the benefit of hindsight I wonder whether I should have done the same. DS is not 5 till mid July and a lot of the issues we have had are, I think, greatly due to the fact that he is one of the youngest (and least outgoing) of a very lovely but vocal and confident set of classmates. It may well be for you that come January 2010 the teachers feel your DS will benefit from some one-to-one support i.e. regular work with an external speech therapist but will not need a full time support assistant...I guess time will tell but I hope all goes well in the meantime. As you say the key thing is to have fun with them and it's amazing what a difference the smallest changes will make.

And yes, in answer to your question, we will be seeking a second opinion from a specialist. I have already identified 2 specialist consultant paediatricians based at local hospitals, either one of whom I will approach for a private consultation in due course - both specialise in social behaviour and so on. I think you are quite right to resist the offer of a diagnosis from a general paed, and I guess that is where our situation differs slightly from a parent who knows in their heart of hearts that there is an 'issue', particularly if they are really struggling with their child's behaviour. I think if I was in that situation I would be devastated but far more accepting of and grateful for that generalist diagnosis. But I'm not in that situation and by the sound of things neither are you. We too are a very happy family, we have no behaviour issues with DS beyond what I would say are the typical ones for his age (i.e. the occasional strop, whinginess when tired or hungry and the odd bit of backchat) and so I definitely want him assessed now by a specialist.

Your point about the unconscious altering of expectation/behaviour sums up how I feel exactly. For this reason, we plan for the moment to keep our situation with DS private and have confided only in 2 or 3 close friends. We haven't even told his grandparents because we both feel strongly that this would not be in DS's best interests, we don't want people in his life 'changing' how they are with him (even if unconsciously) or kind of psycho-analysing every thing the poor child does or doesn't do...

Good luck with the next few months and will definitely keep in touch.

I do need to learn the art of writing more succinct posts though!

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lingle · 05/06/2009 09:44

That's good stuff about the OT report. Sounds like fine motor skills are your lad's biological challenge. Receptive language is my DS2's biological challenge.

May I ask - will you seek out a specialist developmental paed. for the 2nd opinion? I was also offered diagnosis by a general community paediatrician and this was one of the reasons I said "no thanks for now".

I believe that my son is on "early action plus" as well, in that school has access to a speech therapist who comes in to provide training and to observe him.

Nursery teacher and I are both intensely aware that we have 15 months to get DS2 ready for reception in September 2010. We both hope that he will continue to progress such that seeking a diagnosis becomes unnecessary. I will however have a dilemma in January 2010 if the teachers feel at that point that Ds2 will need one to one support that can only be obtained by having a "statement of special needs" when he starts reception, because it is harder to obtain such a "statement" without an ASD diagnosis.

My aim therefore is to help him progress as much as he can by January 2010 and, of course, Sept 2010. I'm reducing my working hours and plan to spend the next year having fun with my son - but with guidance as to what will help him to reach his potential - a gruelling regime of playdates will feature!

It is nice to talk to other people who accept the needs but not the label. So many people who don't accept the label won't talk about the overlap between their child and children with autism.

You mention stigma as your main concern. Greenspan also writes of observing parents given an autism diagnosis unconsciously altering their expectations and behaviour towards their child, resulting ironically in a reduction of the amount of spontaneous joyful playfulness that the child needs most to progress. I was grasping towards this when I explained to the paed. that we are a happy, intimate family and that to undermine that would be to undermine precisely what is fundamental to DS2's progress.

Your summary of the "classic" parental response to a correct diagnosis was very helpful, I felt.

Keep in touch.

Original poster
amberflower · 04/06/2009 22:00

Hiya lingle

Thanks for your post...as you will have seen from my comments on mum2fred's thread we are still awaiting our formal report, but am pleased to say am feeling calmer and less stressy about the whole thing, have spent time thinking about how best to go about this with school and paed in due course and feel I have got a sensible coherent 'argument' to put across to them now. Which I would have struggled to do a couple of weeks ago.

The good news is that DS has already been referred for 5 occupational therapy sessions following the assessment (even though we are still awaiting the actual report) which is great. He starts next week for 5 weeks and does, categorically, need this. I attended the parent workshop for it earlier this week and was shown a copy of the OT's report on him and basically agreed with all of it - key issues being poor writing, drawing and cutting skills, and poor concentration in class. His visual perception skills are excellent however.

So whilst I do think that some of this is probably him being a 'typical little boy' i.e. not being particularly interested in writing/drawing etc so not giving himself the opportunity to develop skills, I'm pleased he's going to get the OT. And regardless of what happens with the second opinion, he'll have had the OT sessions by the time we are able to start challenging things

We are basically going to ask for him to be assessed by an ed psych, for the GARS test to be completed and analysed, and then will take all info to a second paed (we will probably pay to do all this privately, to be honest, to speed things up - and I am very aware that we are lucky that this is an option for us) to ask for a second opinion. Obviously there is a chance this second opinion will back up the first, we are prepared for that, but at least will feel more confident in the process!

I have also collated enough info both from here and other sources to be confident that he should NOT need that formal DX to get the School Action Plus help he needs...

For me it all comes back down to that whole 'parent knows the child best' thing, as you posted on mum2fred's thread. We'll see what happens over the next few weeks - of course until we get paed report it's kind of all ifs buts and maybes anyway! - but I do feel better about everything. For the moment

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lingle · 04/06/2009 21:20

Just spotted this thread. Amberflower we "met" on my thread about keeping your "different" child outside the system.

Would be glad to chat further if you're still around.

movingintothefuture · 27/05/2009 23:24

! will not type what thinking -it would get me thrown off here as far too contriversial but disgust is a good starting point

Original poster
amberflower · 27/05/2009 22:27

movingintothefuture - one of my (several) issues is that we have NO CLUE what his score is on the ASD spectrum - because as far as I know, no formal ASD test was carried out! The paed went through what she referred to as 'a few wierd questions' with us and we completed a sensory profile but nothing ASD specific.

So one of the things I plan to go back and ask for is that the GARS (Gillams Autism Rating Scale) assessment is carried out. I've been advised that we should have completed a copy of this and so should his class teacher in order to obtain a more clear-cut diagnosis and presumably a formal 'score' on the ASD spectrum.

neolara thank you for your posts, your last paragraph in the first of your two posts sums up exactly how we feel about it.

Thanks again for all the replies and support.

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sarah876 · 27/05/2009 19:19

So how comes my son is on school action plus if no outside bodies were involved?

movingintothefuture · 26/05/2009 22:14

amberflower -you summed up completely how we feel about the process. How the F**K do they come to the conclusions they do on such a short observation time. Particularly frustrating when the result is boarderline. If it was clear cut cool no prob, but how can they say for def when the scores are close (either side) to the cut off points? did you find out what the score was on the ASD spectrum? Was it clear or boarderline?

Oh meant to say situation improved and less frustrated so change name to something more appropriate. I have faith in the school and will re-consider the second opinion when he has passed that golden age of 5 when they will think about diagnosis. School suspect I am right and VERY supportive. Roll on sept!

Good luck and I hope you get the situation resolved soon.

neolara · 26/05/2009 21:05

Also, an educational psychologist will not "diagnose" autism. This needs to be done by a medic. However, the EP should be able to help the school staff identify suitable strategies to make life a little easier for your ds in school.

neolara · 26/05/2009 21:03

The funding systems might be different in different local authorities. So in one LEA being at school action plus might mean additional funding, but in another LEA it might not. However, as others have said, the "definition" of school action plus is simply that the school have taken advice from professionals outside of the immediate school (e.g. health professionals, SALTS, LEA advisory teacher services, educational psychologists etc).

A child with a statement of special educational needs will usually have funding specifially earmarked to be spent on them. All children with a statement will be at School Action Plus, but not all children on SA + will have a statement.

Again, as others have said, children do not need a formal diagnosis to be put on SA+. It is about the level of need, not the label. (There will be some children with a formal diagnosis who may not be SA+ because their level of need is managed appropriately by the school without additional advice from outside agencies.)

I think you are entirely right to challenge a diagnosis that you think is inappropriate. As parents, you are the expert on your child and if you think the doctors have got the wrong end of the stick, they almost certainly have done. Any professionals involved with advising the school about how to help your son will be basing at least some of their advice on any the medical label he has been given. A label of autism, if it is inappropriate, could lead to inappropriate strategies being implemented and inappropriate expectations about his behaviour.

aprilflowers · 26/05/2009 20:43

Funding does come for school action plus but and its a big but it is devolved to the school to spend as they wish.
It could be spent on anything - the amount is not ring fenced for your child or even the special needs department.
Although good practice suggests it should be and the schools provision mapping should indicate where it is spent
Only with a statement there is a legal right for funding or support to be put in place and guess what lea are limiting and withdrawing statements whereever they can.

Original poster
amberflower · 26/05/2009 19:06

Thank you all for your messages, they are really helpful and useful.

Frustrated mom, I am aware of the irony of resisting the DX when so many parents all over the country are desperate for a diagnosis! At the root of it all seems to be a refusal to listen to what the parent is saying...which is just is soooo distressing in both my situation and yours! My argument is that the professionals assessed our child for nearly five hours (overall). We've known him for nearly five years. You'd like to think they might at least respect our opinions and listen to what we had to say - but obviously not. I guess the same goes for you too. I really hope your situation is sorted soon.

Hassled, it is not the support I am knocking. At all. I accept he needs the additional help, I just don't believe he's autistic and it feels as if we are being told we cannot have one without acceptance of 'the label'. And I cannot see the 'label' as anything other than "a label that will plague him for life". Because in our opinion as his parents, it's an incorrect label and won't necessarily achieve any more for him in future other than rendering him vulnerable to people making incorrect assumptions and judgements about him. I just can't do that to him, particularly as I've since been advised that the diagnostic process wasn't robust.

I want to reassure myself that we did at least obtain a second opinion and of course, if that second opinion backs up the first, then I will accept that we are wrong and that there is something the professionals are seeing at school that is simply not happening outside the school gates. But at least I'll be confident the process was rigorous, which at the moment I'm not.

It is interesting also to read that school action plus doesn't buy them any additional funding for support. I've specifically been told that it does....

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frustratedmom · 25/05/2009 17:37

Get a second opinion!

Oh i wish we had your specialists . We really think that ds is autistic but they won't tick the boxes because he is 4. I think it might depend on where in the country you live. I would advise you to do as we have been advised and get a second opinion. You are entitled to ask for this. And I would if you are really unhappy with the diagnosis.