teachermum1

You know that I know the difficulties with having a violent child who needs routine - our boys are very very similar and always have been. I too have no family help and often find it impossible to keep my J safe. I guess the difference is that SS have put support in here, at home (because I have never wanted J in residential, and he's soooo young, not just in age but in behaviour, so they HAD to find an at-home solution, if you know what I mean) which means that J is off on activities with his play worker for a few half-days a week and also with the local autism service-again, with workers who he knows. This means he gets access to activities but then comes home for his home routine. I get time with him, but also time apart - like you say, most children do other things in the holidays and I agree that our children should be able to too. I just think it's sad for you and him that they haven't found a way to support you to have him at home more, but if you're happy with it, that's the main thing.

It's a shame they can't put anything in place at home though. If he's at residential all term and then in respite 4 days a week in the holidays, you hardly see him. Glad they're offering more support but maybe they could think more creatively about how to help you have him at home.

J is gifted in many areas and probably has a very high IQ (if he was testable). His reading age is 6 years above his actual age and his computer skills are beyond those of most adults. His dx is autism. He scored virtually full marks on his ADOS test i.e. very severe. There is NOTHING in the official DSM-IV or ICD-10 diagnostic criteria about high intelligence precluding an autism dx!

It doesn't mean there's nothing wrong, and I'm sure it's not your parenting - ADHD might make sense. I would say though that if his ADOS came back as no ASD stuff, it's probably right. The point about autism is that it's pervasive - they're not just autistic some days and not others, and the ADOS is designed to spot very subtle signs. Yes, we know our kids better than anyone, but the psychs are the experts in autism. That's just my view. I hope you get some answers soon.

Do appeal! It's dead easy, even if it gets to Tribunal - the form is only like 4 pages! In the last 15 months, J went from mid rate care and low mobility to NOTHING to mid rate care and low mobility again to high rate care and low mobility to high rate for mobility and care!

I haven't, but hear that it's most common in potentially high cost cases e.g. for v expensive private schools. The DD ones are less likely to have a legal rep for the school because, sadly, even if the school lose, the only compensation they will have to give is an apology/ reinstatement/ staff training, so it doesn't cost them much if they win or lose, so they don't seem to bother paying out for a legal rep!

J was also on an IEP at 3, at nursery. It was called a Play plan, but it was just the same as an IEP and they're talking out of their bums! J was on a Statement at the age of 4 , so if you can Statement them, you can certainly IEP them,as J had IEPs to go along with the Statement. If you have a parent partnership organisation, might be a time to involve them. Good luck.

It took a while to be accepted by the Disability Team as the dx wasn't yet formalised when we first applied in 2007, but I actually quite rate them now. The SW arranged a play worker to go with J to leisure activities twice a week year round (and she's ace) - it was a choice of that or 5 hours of direct payments, bought J a weighted blanket, offered 4 hrs respite a week (though I didn't think he was old enough so declined) got an OT team round to do an adaptations assessment and has generally been really supportive at reviews etc.

I didn't mean why were you worrying in a bigger sense - I totally get all that and have been through a Tribunal myself, but if the teacher is already supportive, why is it panicking you? Not trying to be unsympathetic, but I genuinely don't understand why it's panicking you if they already said the right things the first time - why wouldn't they the second time?

If the teacher has already written a supportive letter, presumably she'll just repeat that in the school report? Why does this worry you so much? The school can only report on what they see there BUT your evidence evidences what you see at home and they can look at both things together.

For me, this forum has been very helpful. I think I would agree with baddad that the polarisation tends to be over issues where people perceive autism being used as an excuse vs. people who are very bruised by society's failure to make adjustments for autism - and both sides see the others' views as an attack on them. Also I agree that the generalisations about social workers/ teachers/ school etc. aren't helpful, especially when some of us are in those professions as well as being parents. People take their own experience and assume it is how things are. I think that's human - but not always helpful. I suppose it's like something I was teaching my pupils today about different viewpoints on situations: 'it's up to me', 'me against the world' and 'the world's against me'. I guess I go through phases with them all - most of the time, I feel that J needs to be parented in a way that respects him enough to realise that he has choices, that his autism isn't all he is. He can usually choose whether or not to walk out of the room or to stay and hit someone now - didn't used to be able to, but mostly can now. So I expect him to make that choice if possible. But equally when the school talk about him 'choosing' to do x, y or x when I know that there probably wasn't a lot of conscious choice in it, I will expect there to be understanding and not criticism from the school. I may accept or even give a punishment for J, but only if I feel it is justified - as he gets older, I know that most of it is justified because it has helped his behaviour improve (it is working) and he is able to make better choices, so rewarding him for good choices and giving consequences for bad ones works. I sometimes find it hard to see which is a choice and which isn't, but rarely. I usually know. I hope that I am being a good parent by trying to push him to live beyond the definition of a static autistic kid who is just the way he is. I expect the world to do a lot of adjusting for J, but equally try to help J make some adjustments for the world he lives in, ideal or not. But I know some people disagree with me and would see my position as a challenge to their own. They may even feel defensive. Perhaps we're all so used to fighting something, even if it's only an internal fight, that it carries across into here. I think the mods do a great job and I hope people's perceptions improve. Me, I like a debate and to hear others' opinions. If I wanted just mine, I'd talk to myself, but I can see that people bruised from their real life battles might sometimes find it a bit stressful and will try to bear it in mind.

Yep, J has a social worker and it's not remotely about care proceedings! She's a disability team social worker, not a child protection team one, and most autistic children round here have access to one! Like any situation, there are some good and bad parents, good and bad teachers, good and bad social workers...while we can only go off our own experience, we can't generalise about any group of people based just on that. Edited to say that J's social worker is brilliant - has organised all kinds of opportunities for him that we'd never have had otherwise

I don't think that it should be left to the school to request Statements as some wouldn't bother as they would know they'd be expected to fund or provide more support than they wanted to. BUT I think Statements of SEN should only be for those who need it most - not necessarily because they're x many years behind or because they're out of control, but certainly not just because they have a diagnosis of something. It should be done off need - how needy are they and how much more help do they need than that which can be provided for by the school? Schools will always have an input because if a child is functioning OK at school (medicated or not, if they're doing OK ,then they're doing OK) then they don't need a Statement. Statements have always been intended to be for a small number of children with needs which cannot be met by the school by itself. If the school can meet a child's needs, there is no need for a Statement (though the system needs to be tightened to ensure that schools provide enough help without Statements being needed)

J gets high rate mobility (after a Tribunal) on the basis of severe mental impairment and severe behavioural problems. BUT that route is very hard to prove (took me over a year) and the unable to walk due to pain/ physical problems seems to be easier to prove. Good luck

JsMum, they're trying for the EBD school because there's nowhere round here for academically bright ASD kids. It's either a school for lower-functioning, non-verbal kids (and J is far far too verbal) or a school for generic learning difficulties or an EBD school. Or a private school an hour away which will cost �80,000 a year. So that's why he will stay in mainstream, because I want him there (for good reasons) and the LEA want him there (for bad, financial reasons, but hey - suits me for now)...at least I hope that's how the LEA will respond to the Annual Review recommendations. While there's something in school that J likes (and he openly says that he loves school and his friends), he will go there.

Just to clarify punishment: if they 'punish' J (or if I do) it's usually be removing a privilege like computer or TV time, or at school, not allowing him to do something he loves like taking back the register. Consequences are very very clear and usually written down and always warned about and are used in conjunction with clear rewards. I don't punish him for behaviours that he has little control over (e.g. if he lashed out or had a meltdown because an alarm went off, I would be sympathetic not punitive and school would be the same. Ditto stuff like shouting out in class - he has ADHD as well as autism and so these are things he can't massively help yet, though obviously it is reinforced that these things aren't acceptable.) BUT he can often make choices, like all of us, and make a bad choice, and I think it helps him in learning to show him that bad choices lead to bad consequences/ punishments so that he learns to make the right choices more often. He DOES learn in this way. For example, he used to get up throughout mealtimes the whole time and then I introduced a consequence/ punishment if he got up more than twice. He eventually accepted this and now rarely gets up. Ditto the biting/ hitting thing - he loses privileges when he does this because he has to learn not to do it...but only if he bit or hit consciously to get his own way rather than during meltdown or something. It's a hard distinction to make, but people who know him well can do it - judge when he's behaving consciously and therefore needing punishment or consequence or when he's in need of sympathy and help. Humans and animals learn this way. Everyone has to learn to make links between behaviour and reward or sanction. I would never use punishments like smacking, naughty steps etc. but seeing consequences to his actions are really important if he is going to change. Re: schools. Well, they're a bit artificial but much closer to the real world of work that a high functioning child will live in than a home-ed situation. Coolblue, you said that "I'm not sure how exposing children to social situations they can't cope with prepares them in anyway for adult life" but I think that ALL children find school difficult, not just ASD ones, and ALL need support to cope at times and yes, adult life is hard too! Part of what children learn in a good school with the right support is how to cope with difficulties. I appreciate that your son didn't have the right school or the right support, but in a different school with the right support, things can be different. It just does take an awful lot of work to achieve that - and believe me, it has taken years and years of battling really quite hard and I'm nowhere near there with this new school. It's not about being lucky, trust me - it's been about sheer determination that my son will stay where he is happy and has friends. I'm not trying to say that you didn't bother or didn't try as hard as me, by the way, but I'm saying that my situation is different because I got different things for J. Maybe things would have been different for your son with more help at school and a school with the right attitude - and I'm sure you tried for that and it's shocking that it didn't happen and that it doesn't happen for all the children that need it. My son's school are trying to force him out to an EBD school and I am refusing because I want him to be with mainstream children (who he is learning from and adapting alongside them because he wants to be accepted, and who are learning from him that everyone's different and that he's still fun even if he is different from them) because that's how society is composed when adulthood comes for HF children who will be expected to integrate, and segregation or withdrawal of SEN kids from the mainstream now is such a shame for the future of this country. Hope this makes sense.

I do get what you're saying and am sorry that your boy had such a bad experience. I guess the difference for my son is that the other kids DO accept him and are helping him make progress much more than the adults do. He has a group of very very strong minded girls who stand up to him when he's trying to be in total control but also support him and show him care. He's learning to socialise and that's what I mean about formal education providing real world experience. It's the adults in his school that need adjusting (like you, his Infant school were great, but the Junior school are much harder work). It is a battle getting them to understand and make adjustments for J, but I can handle fighting the adults to change. But if, like you, it was the children doing the damage, I can see why you would take your child out.

I'm not just saying this because of what I do, but I think that Baddad's posts are always very considered and very measured and considered rather than knee-jerk reactions. For me, home-ed would never be an option because I want J to be part of mainstream society and so he needs to learn to socialise with others. I would far rather put my energy into making school work for him than withdraw him. I guess this links also to other posts of BD's that I've seen, about schools adjusting to autistic children or vice versa. I feel that schools need to learn to make far more adjustments, particularly in terms of their attitudes (and my colleagues are as guilty of this as in any school, to be honest) BUT the learning experience for children with autism must be about being taught to follow the rules of society too, if they are to live in it as adults where the rules will apply. For my son, that learning is more important than his academic learning. So I think schools have a lot to offer if you take that perspective that the real learning is about being with other people. J has a full time statement and yet his school are still finding it hard to cope. I will continue to expect them to make adjustments for him and to remember that much of his very difficult behaviour is because of his autism BUT he can often make good choices and doesn't. I see it at home - sometimes, he just wants his own way and has a kiddy tantrum, not a meltdown, to get his own way, and he is punished for that. So I'll support at school if they punish him for just being defiant and wanting his own way, because he does have to learn that life isn't all about getting your own way! Ditto with the violence, which is much less under his control when happening during meltdown, BUT he has to learn that he can't do it or he'll end up in prison as an adult. I think Home Ed has to be an option for some children, but schools also have to be forced to be more inclusive so that children get to live in the real world with their peers and aren't forced into isolated, artificial education. People shouldn't be forced to home ed because schools can't be bothered to be inclusive. Jeanne, sorry, have gone off on one a bit. One thing I was wondering is if you could get your son to rate various things thumbs up or thumbs down - like various staff, kids, activities, times of day, rooms etc. and see which are his thumbs down things to try to get to the bottom of what's causing it. The other thing would be to get staff at the school to note down exacctly what had been happening for the 30 minutes prior to any of these behaviours to try to identify a trigger. Good luck and hope things improve.

The higher the score, the greater the severity of the ASD. There's an ASD cut off and an autism cut-off. Think J's was out of 21 and he scored 20, with 7 or something being the ASD cut-off and 13 or something being the autism cut-off. Hope that helps.

My son had this, last year. He is 7 now and was dx'd ADHD at 4. CAMHS started to query was it also autism at 6 - I'd not had a clue. The psych said the ADOS might not show ASD as he is so verbal and we'd taught him superficial social skills which she felt masked a lot of his difficulties - she said he was so high-functioning that he might come out as borderline. Well...he had the ADOS and was completely himself - refused to co-operate, kept trying to leave the room, wanted to be totally in charge, wouldn't really have a conversation etc.etc. He ended up scoring almost as high as you can get (the higher the score, the more severe the autism - in theory!). He IS very high-functioning in many ways, but behaviourally he is severe. What the ADOS does is picks up on the subtleties - the odd eye contact, the eogcentric talking, the oddness of detail picked out when looking at the book on one of the tasks, the quality of rapport, the give and take in conversation, the normality of facial expressions and gestures...even a high functioning kid will have social and communication defecits, because those are part of the criteria for having ASD, and that's what the test picks up on. I think it's a good test. It got the right dx and the right dx led to the right support. Good luck.

The authority HAS to fund it if it's the only school that can meet her needs.

The first thing to say is that schools don't need to apply - you can, and it gives you more control if you applied rather than school. However, if she is in Y11, I can see why they're saying there's not much point, as, by the time it came through, she'd virtually have left school anyway. The problem is that Statements only count AT SCHOOL, unless there are exceptional circumstances. So it wouldn't transfer to college anyway, which would mean an awful lot of fighting for a couple of months of benefit. It seems she is getting appropriate education, so I'm not sure what else a Statement would bring her. Sorry not to be more upbeat. Good luck.

Once we actually got taken on (J was referred by consultant paed at 3, but they don't see kids under 5), the first psychiatrist was nice but only able to offer medication for the ADHD. We declined meds so 6 months later were written to and told we'd be discharged as we didn't need anything else from them, but things were at crisis point so am glad that I got back in touch and said we wanted to trial meds, at which point we met... The second psychiatrist. Who noticed that J actually had autism as well as ADHD and who has been an absolute godsend in terms of getting the ADOS and correct dx sorted, filling out Blue Badge and DLA forms, attending reviews at school etc. etc. She's really good and perhaps she is unusual in that she actually seems to be bothered about J getting what he needs. Having said that, we only see her for J's ADHD meds and apparently most parents of 'just' ASD kids just get the dx and a goodbye - so we only get seen because of the meds. There are no other services on offer. She gives advice when we go or if I ring, but there's no services for ASD kids/ parents. I agree with Js mum about out-of-hours advice and easier access to therapies.

If the school are backing you, your best evidence is a teacher who knows your child and can say why they need a Statement. Failing that, the headteacher for the same reason. If your child has a paed or psychiatrist or anyone consultanty or CAMHSy, they would be good witnesses too. Remember that the ed psychs are employed by the LEA and so will NOT be on your side, whatever they pretend. They can't be on your side even if they want to be. Some people pay thousands for private ed psychs and therapists to write reports and be witnesses. I wouldn't have thought that you'd need that for this, as it's only for assessment for s Statement and I would bet that the LEA will give in before Tribunal. It's no hassle to them to assess - they can just write a ###### Statement or issue a Note in Lieu of one. That's when the private reports might be needed. Good luck. If it helps, my LEA have backed down every time (twice) I have put in a Tribunal application. They seem to tend to when they know they will lose as it looks bad for their figures!

Yep, part 2. Part 2 is the only place I've ever seen it when it's only in one place. J also has ADHD in Part 2. However, on J's statement, he also has ADHD in Part 5!