BusyLizzie100

I think it is very dangerous to use an IQ figure in identifying the needs of a child with ASD. It's very common for a child with ASD to have a very spiky cognitive profile, so that they score very high in some areas and very low in other areas. Usually a child with a learning difficulty has a cognitive profile that is more uniform, ie without peaks and troughs, albeit at a level usually lower than average. It is of course also true that a child with ASD can also have a learning difficulty. My eldest is literally off the scale in some areas but extremely low in others; taking an average is pointless because it negates both the extent of each extreme and doesn't take into account the huge difference between each extreme, eg his verbal reasoning skills are very high but his spatial skills are very low, so that he has great ideas but can't record them or organise them. I feel sure that only a psychologist or similar is qualified to do cognitive testing and interpret the results; it doesn't sound right if the school in your daughter's case is making its own interpretation, which sounds like a very easy way out... Apologies if I've misunderstood, but it sounds like you're saying your daughter has difficulties in certain areas? I agree that identified problems should be addressed. And even if global learning difficulties are identified, 'just letting her get along' sounds extremely dismissive... I don't think your expectations are too high at all! Every child is entitled to an adequate education, by law - although the definition of 'adequate' seems to vary quite a lot - I was told not to expect a 'Rolls-Royce' service for my second son, but in the end the mainstream admitted that it couldn't meet his needs, ie couldn't even provide an 'adequate' education. It doesn't sound like your daughter's school is too worried about what happens to her in the future; if she 'copes' well enough now and is just left to get along, how will that affect her ability to fulfil her potential or encourage independent living? I think you have every right to ask a few more questions and get appropriate input, as necessary, such as the Educational Psychologist or autism outreach. Your daughter is likely to need strategies in the classroom that support her needs, whatever they may be, not a dismissive attitude like the one you describe. Lizzie <'> >< <'>

We have three sons on the spectrum. The above is very true of our eldest, who is in mainstream secondary with a Statement. He is academically very able, but his anxiety is affecting his mental health to such a degree that he is on medication with psychiatric input. The view on whether he is 'coping' is split. School who are not seeing how the anxiety impacts on him (he masks it very well) say he is coping and his academic results prove that; we at home and out of school who see the full extent of how the anxiety impacts on him (and the large majority of it is caused by school) say that he is not coping and the risk of breakdown is critical. There is total polarisation of the view of his needs, despite having a Statement that spells out his difficulties and needs well after we appealed… but that's another story. If this placement falls through, however, there is absolutely no other provision available to him. Our second son couldn't cope at all in mainstream. By Year 3 he wasn't learning any more, was lashing out and becoming more challenging in his behaviour and ultimately began to disengage and withdraw altogether. This was despite having more than 25 hours support a week. He is now in an autism-specific setting and absolutely flourishing - no question of whether he is 'coping'! However, this setting would be inappropriate for my eldest because of his high cognitive and academic ability. Our third son is about to enter Year 3 in a mainstream and is coping very well. He is very academically able. His social/emotional issues are recognised but are not impacting overmuch on his experience - yet. I add 'yet' because my experience so far has been that Keystage 2 is when issues start to materialise... I try to maintain an open mind! My view is that 'coping' is not enough. No child should just be able to 'cope'. Sadly those with ASDs in mainstream very often have no choice but to 'cope' or 'fail'. It's the old square peg in a round hole situation. My first is having his corners sorely squeezed, my second was being hammered into the wrong shape and is now perfectly happy in his own odd shape, and my thirs has corners that aren't too obvious yet so the round hole doesn't cause him too much grief, just a little discomfort sometimes... lizzie xx

I really feel for you, especially about the string vest situation!!! Hang on in there and keep at it. Just a thought, and I hope it doesn't upset you - do you think the LA is already thinking that a special school placement would be best? Special school Statements are often much less specific (my son's is); or possibly the LA is expecting you to fight for a special school placement? Or, of course, the LA is just trying to strip everything out as you say... Sending you lots of <'> <'> <'> cos you sound like you need them. Lizzie x <'> <'> <'>

And the new SENCO!! yes, we could be starting all over again in September, which could be good... or not.

We had another meeting at school on Friday to discuss DS1's statement, but we still haven't managed to get it sorted! This meeting follows on from the annual review meeting back in May (the first review), which ended with strategies agreed but no real review of the statement, ie targets set for the next year etc. Weeks after the meeting it became apparent very quickly that even the strategies agreed at the meeting (and actually already written into his statement) weren't being carried out, and we were on the verge of making a formal complaint about non-compliance. (The fact that the school has not been supporting DS1 according to the statement has had a serious effect on his mental health.) Well on Friday we had a meeting to discuss Part 3, involving an SEN officer and her manager; an autism advisory teacher and the head of the LA's autism team; the LA's specialist autism Ed Psych; the SENCO and the Head of Y7, seven professionals in all. And us, Mum and Dad. At last things are being treated with a little more seriousness, although it is a little bit late... the last day of term is this Wednesday. We started to make good progress, telling it like it is and brainstorming somewhat to come up with strategies that would actually work for DS1, but there just wasn't enough time, again, to go through the statement!!! All that could really be agreed was to have an early review in November. At least a date was set for that. So now we all have the summer holidays to think it over and see if the school can manage to put the new strategies in place at the start of Y8, then meet in Nov hopefully to rewrite Part 3 and set targets. Aaaagh, so frustrating that it drags on so long!!!! On the hand I'm pleased that at least a little bit of progress was made, but so frustrated that it takes so long to get things sorted. We just need someone to wave a magic wand and come up with a description of exactly what DS1 needs, rather than everyone pussyfooting around and no one really knowing. Lizzie x

Yes, IPSEA has got its eye on Herts too. The difficulty is getting their illegalities in writing, eg they are saying these things but IPSEA needs written proof. For our son the issue is not so much over specification of hours - he doesn't need 1:1 support as he's academically able - but is mainly in the understanding of his anxieties and in supporting him emotionally. however, should our meeting on Friday show that there is a need to specify those elements of support in more detail, we shall certainly take it further. This meeting is in itself a response to our decision to complain about non-compliance, eg he is supposed to see his keyworker at registration twice a day but it has only ever been twice a week; the social group isn't working because all the ASD kids from the year are lumped together, with no thought as to individual need - some are more able than others and it's just boring for them. I'm really shocked to find out from my son that the other ASD lad in his class has started biting himself in the last couple of weeks - a sure sign that the school is clearly not managing their autistic pupils well enough. Sorry if I've gone a bit , tho it does tie in to the wider scheme things - like how can academies possibly be an improvement to the current system, which itself is so flawed.... Lizzie x

Unfortunately our LA seems to think it is a law unto itself. I have taken them to tribunal twice and each time they have backed down eventually. So even with LAs in control of schools things aren't perfect, but at least there are clear routes to take if things aren't working etc. The whole academy issue is full of uncertainty; our main issue is who will ensure compliance with regard to statements and where will accountability fall? For example, I have a meeting at DS1's school on Friday, to discuss his Statement which is proving problematic to fulfill, apparently. The SEN officer and her manager will be present, as well as the autism advisory teacher and her manager and the LA's specialist autism Ed Psych. If the school were an academy, it could be that these professionals might not be invited - it would be entirely up to the school what resources they sought and bought in. Interestingly, I spoke to the SEN officer at length last week and she revealed that the LA is not happy with everyone becoming academies either - which is quite likely in our area. Lizzie x

Hi Pim, Am going to PM you, cos it's obvious we're from the same area, but just wanted to point out that new statements, including ones rewritten for secondary school, no longer specify hours in Part 3 under our delightful LA, according to their stance on delegated funding. Any provision that is specified has to come out of the school's SEN budget and not from the LA any more. Lizzie xx

Have just found this on the NAS website: Annual reviews during transition periods Moving to secondary school The move between primary and secondary should be considered in the year prior to transfer, ie at the Year 5 review. Clear recommendations about the type of school your child will require at secondary stage should be given. It will then be possible for you to visit all proposed provision and consider all the options carefully. The LA must name a school they think can meet the childs needs but they must consider parents preference. The statement must be amended by 15 February in the year of the transfer (Year 6) to include the secondary school in Part 4. When the statement is amended to name a school, you will be given the right to appeal to SENDIST/SENTW. Well I think I will be making as strong a case as possible at next week's review, then! Even if just in case! God help me, though, if the LA tries to move him I don't think I can take much more...

I actually want DS2 to stay at his current school, which is an independent autism-specific school and goes through to 19. The school itself is not considering this a transition review, they consider the Year 6 to be the transition review. But the Educational Psychologist from the LA has informed us that she's coming to next week's AR because it IS the transition review. I don't trust the LA one tiny little bit, and I know mine is reviewing SEN provision with a view to stopping further out-of-county placements (of which we are one). I'm worrying that the LA will say that DS2 will have to come back to an in-county placement for Sept 2011. At the moment there is nothing comparable in-county; there are plans to create units in mainstreams but I have no confidence in my LA getting it right or even slightly right. So the more informed I am before next week's meeting, the better! Lizzie x

Hi all, Am I right in thinking that the annual statement review for secondary is supposed to take place in Year 5? Is there anything in law or the COP to support this? Or is it a figment of my imagination!!! Have got Annual Review next week so help urgently requested!!! Cheers, Lizzie x

Asperger's is a subgroup on the autistic spectrum. The clue is in the word 'spectrum' - it's a continuum and there may be several subgroups that appear on that continuum. When DS2 was first diagnosed way back when, I'd got it into my head that he had Asperger's and, when they gave him the diagnosis of ASD, I asked if it was Asperger's. The response was: 'autism is autism'. More recently, DS1 saw the paediatrician as part of his statutory assessment. He had been given a diagnosis of Asperger's, but this paediatrician refers to him as having an ASD, and I can see her point. He is autistic, he is on the autistic spectrum, his presentation differs from his brother in some subtle ways that have been noticed in numbers of other people like him; hence the word 'syndrome'. Asperger's IS autism and autism IS autism, it's not mild it just IS. Depending where a person is on the spectrum, their presentations may differ and their experiences may be different; likewise their cognitive skills may be different, physical skills ans sensory issues also. You can't be 'a bit' autistic, although some people live with their differences more easily than others, while others find that their differences interfere with their day-to-day living more significantly. I have three children with ASD and they are all different, in personality, cognitively, their physical skills, how they respond to sensory stimuli and in their sensory perception. One is more obvious in his difference, the others may be not and are 'higher functioning' in some ways, most noticeably academically, but they are all autistic. And now I'm being hassled to get off the computer by DS2 so my turn's up - time to get off me soapbox!!! Lizzie x

In my area, it's looking currently like the majority of secondary schools are expressing an interest, which raises an interesting point: What happens if ALL the schools in one area become academies and there are no 'state' schools left? It may of course not be a problem at all, but the issue currently is we just don't know, especially re SEN and Statements. Last year before my son had a Statement we approached all the secondary schools in our area and the majority response was negative, largely the result of delegated funding by our LA - 'Can't offer any support without a Statement, and we're even struggling to fulfill the Statements we have. Have you tried X school, or Y school (read: Go away)?' These schools are all now wanting to become academies. Lizzie x

There seem to be quite a lot around the surrounding area, too, including my son's school! Eek! He has a Statement and they're not doing terribly well fulfilling it now; what happens if/when they become an academy?! And why aren't we as parents of current pupils being told that the school's expressing an interest in becoming an academy? Doesn't seem right. Lizzie x

Thanks for your brilliant post JsMum! Yes the toddler analogy is absolutely right, well put. And yes, I should stop beating myself up about how to get school to understand - his needs and anxiety have been well proved and documented and the psychologist even came to his AR; school needs to do what the STatement says and if they don't then it is non compliance. Hopefully if we get this other meeting we can clarify what school is having difficulty with. As for the safe space, great idea to introduce it first as a 'chill-out' rather than the place to go when everything else has failed and I've already been sick from the anxiety!!! That is a subtle difference but very worthwhile. Your post had really cheered me up, thanks <'> Lizzie x

Yes it does say this, exact wording is: 'He will need explicit instruction on how to use this'. There are numerous other issues, such as how often he meets with his keyworker - the statement says at each registration, ie twice a day (and this was ok with the senco when I met her at the end of Year 6 to discuss our appeal). Also we should have half termly meetings with the senco, probably so that we don't end up in the situation that we are now, of no one communicating!!! And similar other things. Well, dates for a meeting are being discussed among the professionals, apparently, but I'm not party to them. It'll be a shame if they pick a day that I'm working - nearly all my annual leave goes on time off for meetings and appointments as it is, so I might not have much left!!

Absolutely right. After a couple of days of abject depression (!!) the specialist EP for the LA has strongly recommended we and school have a meeting, although she does not have the authority to make school do it. I have today penned a very worthy email saying I think this is an excellent idea and would give us an opportunity to go through Part 3 and sort out what can/can't be done and why, eg if they have a genuine grievance over lack of funding then that could be followed up. I feel like the ball is firmly in their court now and much depends on their response - if negative, then we will certainly be taking a formal and official route. I'm just not certain whether that should be to the LA customer focus dept (complaints), the head of education, or straight to the local ombudsman. Thanks you guys for your replies, they're always helpful. <'> >< Lizzie xx

*Takes deep breath* My eldest son has AS, finally got a Statement right at the end of Year 6 and started at a mainstream secondary in Year 7 in September 2009. He is very bright but has massive anxiety, which severely intereferes with his day-to-day functioning. He's had psychological input for over four years, psychiatric input for two years and is on anti-depressants. He is currently having CBT. Several professionals, including the LA's specialist EP, have identified his needs and we went to tribunal to ensure that they were well represented in Part 2 of the STatement - he is now 'expert' at masking his anxieties, worries and fears at school, although these professionals have recognised that the very large majority of his anxieties are school-related. The result is that, despite the Statement, the secondary school have for the majority of Year 7 dismissed the Statement as irrelevant - they see none of the issues described and have even tried to persuade the specialist EP that she is wrong. This means that my son's anxiety has escalated to the point that we had to seek an emergency psychiatric appointment last week over concerns that he was having a breakdown. His Annual Review took place in May; it was a good meeting in that one of the professionals who is familiar with the full extent of his anxiety was able to talk about it, and proposals were made and strategies agreed. Nothing has happened since. In reality these things agreed at the meeting have been on his statement for a year and not done properly, for example he has been given a Time Out card for when he gets very anxious, but he feels he cannot use it. We have said he needs roleplay to understand how to use it, that explanation needs to be explicit, that he needs to be introduced to his Safe Place and to the person he can go to - school says that because he is not using it, he obviously doesn't need it. School says they have put strategies in place but if he doesn't use them or ask someone about it, then they can't do anything more. Because my son appears bright, intelligent, articulate and able to rationalise, they take him fully at face value, despite the wealth of professional information that gives a true insight into what makes him tick. We are now at the point of asking school, the autism advisory teachers and the SEN officer why my son is not being supported, but everyone is passing the buck. I feel my only option now is to complain formally. I've checked out the IPSEA site and have a copy of their model letter, but I;m finding it hard to get right - for instance, school says they are putting strategies in place but they are not doing it appropriately - the outcome is that my son's mental health is suffering. Any ideas on how to get that message across? And what happens if a letter to the LA's chief education officer brings no joy - when I wrote a similar letter a couple of years ago about my second son not getting the SALT provision on his Statement, the chief education officer just said 'yes he is' (I didn't take that further because we then were trying to move him to a specialist school). What would be my next course of action? Don't want to appear pessimistic, but... Would it be the ombudsman? Frustratingly, this has all dragged on throughout the year so that there is now only four weeks left of Year 7... Any advice appreciated. Lizze xx

I would add that often it is the behaviour that can be intimidating or 'scary' in the sense that it is unexpected or unpredictable, not necessarily the person. IF an autistic person is 'following' his or her own set of social rules rather than that of the typical majority, it can sometimes make them stand out and therefore draw attention. It can also often draw attention to behaviour that isn't necessarily that intimidating but just slightly odd, but for those without much understanding that can be enough to put them off. Then again, a person doesn't have to be autistic to act slightly odd at times...! Lizzie xx

Googled and found it. Now I am really annoyed!!!!!!! I have not fought on behalf of my kids for extras, but what is appropriate and is at least 'adequate', which, as I understand it, is the test in law. LAs are required to provide an adequate education, not necessarily the best or most appropriate. That would indeed be lovely, but sometimes just trying to get them to provide 'adequate' really does need 'dogged determination and a legalistic frame of mind'! And, importantly, all parents whether middle class or otherwise should be able to seek what's right - yes, 'adequate' - for their children. It would indeed be wonderful to have a thorough and proper review of SEN throughout the country, perhaps ruling out the current postcode lottery situation, but I would like to see things improving, not deteriorating. I would like to see the assessment process removed from LA control, for example, so that the assessors are not also the providers of services and support - assessment should be independent in that sense, and parents should not have to rely on paying for private assessment. Oh, i could go on for ages on my soap box, but haven't got all day...... Lizzie x

I can't open the webpage!! Is the link just not working for me? Lizzie x

My son's secondary (mainstream) doesn't have a 'quiet room' or something similar, but I've heard that some secondary schools do. Does anyone's secondary aged child have access to a quiet, calmdown, or de-stress room during the course of the school day? If so, is it a classroom, a small room, something else? What's in it, who uses it and is there supervision? DS1 is in Y7 and finding the whole secondary experience stressful; his statement allows him to have access to a safe retreat but identifying somewhere appropriate is difficult. The school has said he can use a time out card and go to the Matron's office when he gets anxious/stressed, but he doesn't want to go there because, he says, 'there are other people in there'. In an ideal world it would be good if he could bounce on a trampoline for 10 mins between lessons, but this is mainstream and that ain't gonna happen! How do other kids de-stress at secondary, or at least break it up into manageable chunks? DS1 will not tell anyone if he needs help, he bottles it up and it all comes out later. I need to find a strategy to suggest to school that is easy for them to manage (!) and is really easy for him to access. I've asked the EP but she hasn't any suggestions. Lizzie xx

I think this is a very good idea. I was in frequent contact with the SENCO at DS1's new secondary, sorting out additional visits, while he was still in Y6. It's an excellent idea to have a meeting with them to discuss your concerns. It's also very good that you have a referral, and in just a few weeks, I understand. I would also pass on any information gained from that to the new school. Don't be put off by the current school's attitude, we had similar with DS1. You do know your child best and they are teachers after all, not diagnosticians. Good luck, and don't forget to let us know how you get on! Lizzie xx <'>

Great programme. A great insight into the lives of the autistic people featured - albeit in singled out areas. I feel so uplifted by Tom's story, especially since his mum said 'prove me wrong', and he set out to do just that. Kirsty, you have such an infectious giggle, I loved watching you. And Alex too. I do hope you manage to see more of each other. I really hope something turns up for Oli; my feeling was that he has a lot to offer but it's difficult for employers to see that. Lizzie x

Yes, me too! It might not turn out perfect but it's a step in the right direction, I hope. Lizzie x