School involvement before diagnosis (AS)

[AlwaysInWonder]

ds2 (7yo, Y3) has just started to see CAMHS re possible diagnosis of AS. So far they have met him once and seeing me once and their idea is that ds2 displays some autistic traits, enough to be noticeable but not enough to be an issue (or rather not enough to require support just right now). So they have advised that we wait and see how things progress.
They also have advised not to talk to school about it as it might change their behaviour towards ds2, saying that that in itself wasn't good.

The school hadn't flagged up anything ... until now where the teacher has actually noticed he has poor eye contact and she can't tell if he is listening or not. She also says he is not communicating easily (ie he doesn't say anything but also messages aren't been relayed to me)

I have a meeting planned with her (Originally just parent evening type of things) but I am wondering if this would not the right time to raise some possible issues with her and let her know about CAHMS involvement, even though the psychologist (??) isn't keen on the idea.

What do you think? Good idea or not?

[AlwaysInWonder]

Well I have to say I wasn't quite sure about having a word with the school myself. I have been worried about suffering from the 'over thinking/over worried' mum syndrome.

But I am thinking that if his teacher is noticing things then I am not dreaming, there are some real issues.

Apart from the teacher being aware, what can be done within the school setting though? I am acutely aware that the money is tight atm so not hoping for a lot.

[AttilaTheMeerkat]

AIW

Ah the usual wait and see crap from CAMHS. That could just enable your DS to be further failed. CAMHS certainly have their place but ASD is not always their area of specialty by any means.

You are in some ways fortunate that his current class teacher has noticed something with regards to eye contact; many do not and would not. Generally speaking teachers are not skilled or trained enough to spot any child with additional needs. Is your son on the SENCO's radar; he should be made known to this person as well.

How is he is class and is he managing currently?. If he is managing currently then this is good but there is no guarantee whatsoever that this happy state will continue in Y4 and beyond.

You need to think longer term and also secondary school. How would he be there if he did not receive any additional support?.

In your case I would apply for a statement now and ignore any naysayers. You are truly his best - and only - advocate here. Look at IPSEA's website //www.ipsea.org.uk and get a hold of a copy of the SENCOP (this is online). Knowledge is power!.

[AlwaysInWonder]

So does it mean that you can get a statement wo a formal diagnosis?

ds2 is on the radar of the SENCO as he had some big issues language wise in Y1 but they seem to be happy with his progress so not followed iyswim.

Agree about thinking long term. That's the reason I have started the investigation for autism. Where I am, CAMHS is the first point of contact.

[AttilaTheMeerkat]

You do not need a diagnosis in order to apply for a statement.

[AlwaysInWonder]

I had a look at the ipsea website (very good thanks!).
Then that makes sense. It is possible to go down the route of the statement anyway.

I think I will have a word with his teacher, see what she has noticed and tell her what I have noticed too. Then see if we can get the SENCO involved. Hopefully this should not be an issue as this is ds2 last year teacher and I got on quite well with him.
School has also been very good so far both with the issue of language and some issue with soiling (which is now registered as a 'disability' in their paperwork)

[jbean66]

Hi. Dont want to be too cynical, but my experience is that no-one will arrive on a white horse to rescue your son or you - schools are run by the county councils who want to provide the minimum to the maximum number of children due to budgetry concerns - if you want your son to get the right support you will have to fight for it. Forget about making friends or influencing people, as headteacher told me, the parents who scream the loudest are the only ones who get support for their kids - the rest fall through the cracks - of course she only told me that as ds was moving up to secondary so leaving her school!

Teachers and SENCO's do not have the training in SN you think they would have. A statement places a legal requirement on your local authority to provide specific support for your child, which is why they usually have a policy to block any attempts by parents to have their child assessed. Fortunately, there is a step by step legal process to force them, if you have the evidence to support your case, to assess - but no-one at the school, CAMHs or LA is likely to tell you about it!! Contact IPSEA (details online) who are a SEN advice line (sometimes hard to get through but oh, so very worth it!!) who will walk you through the process, one step at a time - not just for statementing but on dealing with school going through all the stages.

If you are thinking of going for a statement, once you let the school or LA know, they tend to circle the wagons and become very obstructive so use this time to get them to talk openly and gather info - use email or letters when contacting school so you have a record, or email after conversation to confirm discussions, keep a journal of every comment, incident etc - all of this is useful evidence. Keep a close eye on attainment grades as they are required to ensure that your child maintaines the same or better rate of progress - so if reading age is not going up by 12 months per year (as chrono age is) child is falling behind, if subject grades do not go up by same rate, stay the same or even regress that is brilliant evidence to force assessment (although my ds's school tried to hide that!!).

Not sure how much I can post as never done this before, but lastly, if you can afford it get independent assessments done - speech and language and ind. educational psychologist. LA wont like it and may refuse to accept it but a Tribunal will accept it - oh and dont be scared of a tribunal, if you have an obstructive LA you have no chance of getting them to agree to anything, at least at tribunal (which is totally unbiased) they go on the evidence so you have at least 50/50!

One last thing - we had a brilliant ed psych called Mike Davies who is a consultant educational and neurological psych with over 25 years experience with AS I think, and on the expert witness list (so his evidence far 'outweighed' LA's ed psych) who helped ensure my son secured a place in a fantastic residential special school - a first at that school although it is in our county! His details are also on line - I hope it is ok to post that??

Not trying to be too militant, but after years of trying to get schools and LA to do the right thing (cos this is Britain right? We look after our kids, dont we?) realised that I had wasted so much time and wished someone had told me there is a process, you just have to know it and 'they' rely on us parents not having that knowledge!

Good luck!

[jbean66]

Parents can make a formal request to LA for assessment, which they must respond to within 6 weeks. If LA refuses, you can take to tribunal to try to force them to assess.

See: www.ipsea.org.uk/What-you-need-to-know/Common-problems.aspx#RequestingAssessment

which even provides a model letter

[AlwaysInWonder]

Thank you, that is all very helpful.
Very much starting on this path and probably not in the right place yet to be ruthless.
But the idea of the diary is a really good one (both for the school and for CAMHS).

Academically, ds2 isn't doing too bad. Maths better than english but he is sooo hard working. That's why he is doing OKish. He can (and always has) put his head down and given the best of himself.
He is also very quiet at school. When things are getting hard, he just retreats (and keeps meltdowns for home where he feels safe enough). But I know his anxiety levels are high.
There are 2 main issue for me: one is the fact he can be very literal (so issues with understanding), the other is social side and other children. This is still OK at the moment but, from reading other threads on here, I know it might change a lot in Y4/5 (and then in secondary).

How do you find a 'good' SALT and ed psychologist to have an evaluation done?

[jbean66]

Secondary can be a real problem - moving from nurturing primary environment with minimal changes of class and teachers to moving constantly which can have huge impact on ability to concentrate etc. Also expected to be much more independent and socially sophisticated which can be impossible for AS kids. Much more prone to bullying and mental health issues such as depression. Dont underestimate the meltdowns at home - usually means school causing huge stresses. Usual to get 'spikey' profile in kids with AS - good at maths, science IT but may find English increasingly difficult as they move on to having to interpret poetry etc - you mentioned language difficulties early on which may be pointing to some kind of language difficulty/delay.

Re independent ed psych, I knew my LA was using senior ed psych so wanted a big hitter whose 'verdict' would carry more weight so went on the expert witness list. We went to the London Children's Practice for ind. SALT www.londonchildrenspractice.co.uk - see they now offer 'multi-disciplinary assessment'. Be mindful that should you go to tribunal, you want a reason for the panel to go with your expert's assessment, not the LA's.

[jbean66]

I also found it incredibly useful to have a totally independent assessment of my son's difficulties and a clear idea of just what he needed so I knew what to fight for - I had too many people telling me things that met their interests/needs and no-one advising me on my son's! As a parent, and not an educator, I found it very hard to work out what I should be demanding - especially since my voice carried no weight!!

Re meetings at school - I always found I faced a huge number of 'experts' and my voice was drowned out and their minutes of the meeting conveniently left out the arguments and good points I made, only representing theirs.

If you can, get someone to go with you to take notes, then type them up immediately and email to everyone at the meeting - the first set out always seems to carry more weight and I wanted evidence that I had argued against what they were insisting on!

[AlwaysInWonder]

As a parent, and not an educator, I found it very hard to work out what I should be demanding
That's exactly where I am atm. I think he has great difficulties making sense of what is happening around him but has managed so far to find ways to cope.
But as he not saying anything (eg I find it hard to go and talk to my 'friends'), it's difficult to see where is the issue.

Perhaps the answer is to go for an independent assessment so that I have an idea on how best to support him.

[lingle]

I am probably the least go-for-statement and go-for-diagnosis-always person you will find on this board but I'm genuinely taken aback by

"They also have advised not to talk to school about it as it might change their behaviour towards ds2, saying that that in itself wasn't good."

you are the expert on this child but the class teachers are the secondary experts, the people who know him best in an educational setting, SN training or none. If you are the manager of DS's "team" the classroom teacher is, or should be, your star striker. So if he is struggling with particular areas, they absolutely need to know. They are committed to him for a year, and in a good position to start making more detailed obversations and developing strategies to make his message-taking responsibilities clearer (and figure out if he actually understands the messages).

I'm really quite disgusted by this and it is making me wonder if I've been a bit naive in the past.....