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

[amberflower]

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• is quiet and withdrawn in classroom and seems overwhelmed by the 'free flow' atmosphere of reception.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.

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!

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!

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

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.

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 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....

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.

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!