A difference of opinion with nursery
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Ian Sharrock i...@sharrock.org
Greetings everybody.
I'm sending this post to the newsgroup, which my good lady wife sent to the UK autism mailing list; I'd be interested in comments. Thanks to all the people on the mailing list that replied that also post here.
Ian ==================================================================== I have just collected Xavier from nursery in tears. It has took a lot of rocking and cuddling to get him to calm down and so I might not be seeing things clearly so I wondered if I could get some unbiased input.
At the moment nursery feels they are having a battle of wills with Xavier. He is following his rebeus timetable and basically doing what they want him to do, but various points in the morning he is refusing to co-operate. Today's problems apparently started when he did not want to sit and colour. They sat him at the table anyway and eventually he drew a picture. However, when it came time to wash hands for snack time he refused and when he was made to he threw himself on the floor in his standard tantrum, he remained tearful, refused food and drink and would not be placated. I am not sure why he was crying when I went to collect him but he was sobbing inconsolably onto his helper's shoulder and refused to acknowledge me when I went to take him from her. It wasn't clear from nursery's account how long he had been crying, if this had been ongoing since snack time or not.
Today has been exceptional I admit, so many areas where Xavier refused to co-operate. I don't think it helps that last Monday the woman who provides the support in nursery for him under the provision of his special educational needs started and she has no experience with an autistic child and the nursery had no clear plans how to 'use' her either. She was employed because the nursery could get an "extra pair of hands" every morning instead of a trained person for the seven and a half hours of trained help specified on his SEN. We are rather annoyed about this to be honest as we were led to believe by the school that they intended to employ someone with some experience. It appears nursery were not keen on this though as they would still be left with days that Xavier had no helper - his provision would cover 3 out of 5 mornings.
The main problem here is that I feel there is a breakdown in communication between themselves and Xavier. We know at home that we need to approach something Xavier does not want to do from different angles sometimes, before he understands and does what we want him to.
Nursery on the other hand feels that Xavier is trying to exert control over what he does and manipulate them using tantrums and tears. I am not saying this isn't always the case, as I am not there to see his behaviour. However, I think they overestimate Xavier's ability to understand language. For instance, up until recently if Xavier was disruptive in 'quiet corner', when everyone is expected to sit quietly and listen to a story for example, they would take him out and let him sit in another part of the nursery with the nursery nurse. However, they have decided that now he must stay in quiet corner, so when he wants to get up and go out they feel he is trying to get his own way.
They don't realise that they've disrupted his routine, which they have taught him. I personally think he doesn't understand why it is unacceptable to leave quiet corner when he doesn't want to sit quietly anymore because they always took him out.
At the moment we seem to be at a stand off. I explain to them I don't think he understands them and what they want and that he isn't simply trying to get his own way. They on the other hand say that they do the same things every day, that he knows that is what he does and so it must be a battle of wills. Today the nursery teacher did throw in that they had seen this behaviour before in Oliver (the only other autistic child in the school), as if to say they knew what they were doing because they had experience with another autistic child. I must confess this is a bit of a red rag to a bull as Oliver is *very* different to Xavier - he has been described as more 'severe' and is at the lower functioning end of the spectrum, even now at seven he has no language and is not prone to the emotional outbursts that make Xavier so uncontrollable. I feel it is unfair to compare the two as they are two totally different children, just because they are both autistic means nothing. Up until last Monday (when the helper started) the nursery always insisted that the problems were exacerbated by a shortage of staff - Xavier takes up one person's sole attention when he starts to tantrum. They can't say this anymore as they have the extra pair of hands they wanted.
Any ideas? My instincts say not to leave school to it, even though their attitude seems to be it is not for me to interfere.
Sorry for going on so long!!!!
Paula Sharrock ====== end of repost =============================================
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"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Paula, The behaviour you describe is called "Demand Avoidance" by my psychologist (also known as "Oppositional Defiance"). Put simply, it is the difficulty of an autistic person to cope with demands made upon them by other people (worsened significantly by semantic-pragmatic language disorders).
It is a behaviour problem extremely common in ACs and resulting from anxiety about the world. It is *not* an attempt to manipulate (autistic kids can't do that - manipulation would take too much knowledge of other people's states of mind to know how a certain behaviour would make them feel). It is *not* naughtiness, but more like a compulsive behaviour that the kid really cannot control.
The very *worst* way to handle demand-avoidance is attempt to force the child to comply (unless it is literally a matter of life and death).
Since the behaviour arises from anxiety, forcing the child to comply increases the anxiety. Hence, the situation where Xavier can be successfully forced to do one task he was demand-avoidant about, but had a meltdown on the next confrontation.
Added to this, Xavier cannot even understand the instructions clearly.
Semantic-pragmatic problems mean that he will interpret speech by picking out the salient nouns and verbs and trying to logically deduce the connection between them. This is hard mental work and likely to lead to many inaccuracies. That feeling not only of having unreasonable demands made upon him is worsened by the fact that he is not entirely clear what those demands *are*. The result is as if someone barked at illogical order at you in a language you only half-understood. You would either become stressed and anxious, or possibly defensive and aggressive. You certainly wouldn't become compliant.
These teachers *need* to understand autistic behaviour if they are to help Xavier and not give him major behavioural problems and major mental health problems down the line (anxiety and depression). It is not acceptable for them to argue that Xavier is being manipulative/naughty etc. because he is clearly displaying features of his disability.
Try to get some professional reports to back up what you are saying -
something on Xavier's semantic-pragmatic disorder (if that isn't formerly diagnosed yet, now might be the time) and something from a knowledgeable psychologist about Xavier's behaviour problems and correct management. Meanwhile, you have an uphill struggle to either educate the school, or find a school that is willing to learn. If it will help, I am willing to share with you the letters I wrote to the education authority about my Sam, which might read rather familiarly.
Good luck.
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Anna Hayward, Alien Visitor
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term ...@chartermi.net (termite)
On Mon, 18 Mar 2002 22:55:11 +0000, "Anna Hayward, Alien Visitor" I think you're mostly right about this, as my daughter does a lot of the same things Paula's son does. There's times when she doesn't want to wash her hands at snacktime, or go from one room in the school to another, and it doesn't seem to be manipulative or even based on whether she wants to do something or not. It's just that she's feeling overwhelmed by having to change activities.
But ... a few months back she was having trouble on the school bus.
She wouldn't keep quiet or stay in her seat and whenever the bus would p*** a building with a Pepe LePew like skunk, she'd cry "skunk!
skunk!" and drive the bus driver nuts. (The driver didn't know that answering "Yes, that's a skunk" would have probably quieted her.) Anyway the school had a meeting with us and we hit on the solution of giving her a book about Sasquatch the Skunk and a little skunk doll to be her companion on the bus. It seemed to work, but she wanted to take the skunk off the bus with her. The first week or so, she'd just try to take it and sometimes would make a scene when we wouldn't let her. Then she hit on the idea of hiding it in her backpack. This surprised me and pleased me. It was her first real attempt to decieve someone and showed me that there are times when she does have an awareness of other people and what they can percieve.
I guess what I'm leading up to is although most of the child's behavior can be described as avoidence, there may be manipulative or "testing of will" factors involved too. It sounds to me that the people at the school need to learn quite a bit about Oppositional Defiance and related things, but I wouldn't discount a manipulative factor at times. It's best to observe the environment and the behavior carefully and try to figure out what's really going on. They need to give him more thought than they've been doing, I think.
"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Termite, I was actually talking specifically about Xavier and Sam, but I expect a lot of it applies generally.
Yes, I agree it's an advance for an AC kid. Btw, how old was she? We're talking about AC pre-schoolers here, and I'm pretty sure that any AC pre-schooler with a diagnosis would not be able to deceive in this way.
I was about 8 or 9yo when I first learned to deceive, which is considerably older than NT children.
AC pre-schoolers cannot be manipulative - they lack the necessary pre-
requisites of Theory of Mind.
I would in the case of Sam and Xavier.
Maybe it would help if I define what I mean by "manipulation".
Manipulation is a kind of social slight-of-hand by which you do and say something in order to divert a person's attention or lead them to a certain conclusion that you wish them to draw. For instance, flattering a person before asking them for a loan. The idea in this case is to make them think well of you and be so puffed up with pride, they lose their critical faculties and so give you what you ask. That is manipulation.
You cannot manipulate if you have little idea of how another person thinks, or what effect your behaviour or words will have on their thought processes. ACs in general, but most particularly AC pre-
schoolers simply do not have the cognitive equipment to figure out if they do action A, you will react with action B. This is Theory of Mind -
knowing another person's perspective on events.
What people often mis-label "Manipulation" is actually closer to "brute force and ignorance". IOW, the child stubbornly continues demanding a cookie until the adult gives in, in exhaustion. This is not manipulation because the child actually has no idea about the adult's mental state (if they did, they'd realise that this is a poor long-term strategy).
The child simply has an idea in his head ("I want cookies!") and repeats it ad nauseum until he gets a cookie or something distracts him (which is not likely to happen with an AC kid!).
AC children will do this behaviour even if the adult *never* gives in.
An NT child would learn because the NT child (even at that age) would have some inkling of the effect this behaviour was having on the adult.
The NT child says to himself "Mental note: If I scream and scream until I'm sick, Mummy will give in and start apologising to me". Thus, with an NT child, if Mummy never, ever gives in, the NT child learns that this is a poor strategy. The AC child, OTOH, has a pretty foggy idea about the connection between screaming and getting the cookie. He may learn, by repetition, that it works, but by "working", we simply mean he gets the cookie. The learning has nothing to do with the parent's state of mind - the AC has not learned that "If I scream, I make Mummy feel bad and when Mummy feels bad, she gives me cookies".
I agree with that, but unless they have a much better understanding of how the AC mind works, they are going to continue to make incorrect ***umptions and treat the behaviour accordingly. If they believe that Xavier's tantrums are an attempt to manipulate, rather than a stressed-
out cry for help, they are probably going to get cross with Xavier and tell him off, when what they should be doing is taking Xavier to a quiet corner and letting him calm down.
A cl***ic example of such misunderstandings is when a teacher was putting my Sam in time-out for hitting another child (Sam doesn't like other children), and then Sam refused to leave the time-out corner!
She'd only put him in a quiet room with an egg-timer for company. Sam was in 7th Heaven. Talk about rewarding undesirable behaviour! Despite Sam's Theory of Mind deficiency, he learned pretty fast that if he wanted the quiet room with the egg-timer, all he had to do was hit someone. But that isn't manipulation - that's plain old logic.
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Anna Hayward, Alien Visitor
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Terry Jones terryjo...@beeb.net
When I read this, I thought that you were describing the behaviour of the people at the *school* :) until I read on to: To me is seems that the real problem *is* the behaviour of the people at the school, and that it's a problem in *NT* psychology - how to get people to do what they *ought to* but for various reasons won't / can't.
Perhaps an outside agency / advocate might also be helpful (if there is one available of course). Perversely "institutional people" (in schools, offices, etc.) often pay more attention to these, even though they are saying exactly the same things as the individual whom they are ignoring. Also it might help to have someone who is less emotionally involved in the situation.
Terry
term ...@chartermi.net (termite)
On Tue, 19 Mar 2002 09:58:20 +0000, "Anna Hayward, Alien Visitor" Just about 6.
Hmmm. OK, I've got to admit that I haven't seen my daughter do anything like that, either.
I think Sarah may understand this on some level as I've noticed she tends to be more persistent with her mother, who gives in more readily that I do. But I'd agree that it's pretty foggy for her.
Thanks for a good reply; actually, there's a lot I don't understand about manipulation, like, um, how to do it? (My Dad always said I needed to learn how.) I've tried and it's so transparent when I do it ... Guess I'm not necessarily a good authority on the subject.
"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Hi Termite, Lying and deceiving are actually excellent social skills that everyone has to learn to survive in this world (sadly). So from many POV, it is excellent that your AC 6 yr old has learned that art so "young".
I actually find it funny that Sam can't lie. I ask him "Who ate this cake?" and he says (without any attempt to look contrite) "I eat the cake. It was yummy!" He also does forbidden things right in front of me, instead of waiting until I wasn't looking, which could look like brattish behaviour if you didn't realise that he is incapable of understanding the concept of "sneakiness". It's actually quite refreshing.
See, people use terms like "manipulation" very imprecisely. It seems to have a social meaning that has more to do with the person's feelings than any accurate description of behaviour. But, like a lot of language, it betrays subconscious prejudices (the implication that the AC is somehow aware and in control of the behaviour and can stop it if they want to). I think we should avoid using it unless we mean it in its literal sense.
She seems quite able, like many female ACs. It is as if the autism doesn't quite over-ride the naturally more socially skilled female brain.
OTOH, it could just be that she's bright and has worked out cause-and-
effect, simply by trial and error. The behaviour in itself doesn't prove Theory of Mind.
Can't help there, I'm afraid. I have seen how other people do it and I'm not sure it's a skill I would care to acquire.
People say it's creepy when I try to do it, particularly when I try flattery. "Obsequious" was the description of my latest attempt!
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Anna Hayward, Alien Visitor
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Terry Jones terryjo...@beeb.net
But could this be simple behavioural / mechanistic learning rather than any type of "understanding"?
Terry
term ...@chartermi.net (termite)
I think on some level she's aware of us as people with different personalities/styles of dealing with things. I don't think she's too aware of other people and how they differ yet.
She's been getting more interactive lately, but still has days when she seems more wrapped up in herself.
Paula Sharrock pa...@sharrock.org
I whole heatedly agree!!!! I ended up in a meeting with school today and the only 'positive' thing that came out of the meeting is that the nursery teacher was as p*ssed off as I was at the end of it :-D I tried to explain about semantic pragmatic problems, lack of TOM as possible reasons for Xavier's non compliance, but she didn't want to listen. The nursery's position remains adamant that the issue is a battle of wills. The crux here is that the two areas of conflict are snack time and play time. (He refuses to wash his hands for a snack, their strategy of if you wash your hands you can have your snack isn't working because he doesn't want it and he doesn't want to sit. Same with play time, he refuses to put his coat on and often does not want to go out to play.) He has been at this nursery since September 2000 and so the nursery feels Xavier knows that snack time and play time are part of nursery, to let him withdraw from this activities is not an option as it is teaching him if he plays up he can control/change the routine. His teacher basically Xavier has got to learn he has to do as he is told in nursery and school, I don't think she can grasp that he might not be able to learn 'the rules'.
I can understand that they need him to follow the same routine more or less than the other children, I will not be a party though to forcing him to comply. I will not for instance, agree to them physically making him put his coat on to go outside as apparently they were given permission to be the mother of another ASD child. Instead, we have come to an agreement to tackle the hand washing issue and I have been asked to provide continuity at home, in this case to get him to wash his hands before meals. The fact that we have other issues at home which makes a joke of the idea of continuity and if they dealt with half the issues I had at home then they would have reason to complain!!! It is a gesture of goodwill and much politer than the one involving my index and middle finger that I would rather exhibit (tell them to f*ck off!).
We do have a transition meeting on Monday (I only found this out today) where the early needs team will be involved. The particular woman who is attending actually diagnosed Xavier and I am hoping something comes of this as she is the nearest we have to a specialist. In the past she has been able to step in when we have found nursery's strategies unacceptable. The only other resource I can think of is the Ed psych who did mention if I was unhappy with the school's approach I could contact him, but I have only met him once and don't know what he could do if anything.
I have ranted again - sorry! I am still mad that they upset him so much he cried for at least 15 minutes and he didn't quieten till I calmed him. I am still mad the implications made of my parenting skills.
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Paula Sharrock
Antonia Asps...@gmx.net
Don't really have any useful thoughts on the original questions, but...
I wouldn't be so cathegorical about that, Anna. I think I knew about things like that at about 5-6 yo. But I don't think I figured it out for myself, I learned it from children's books (that you could deceive people by hiding stuff from them) read to me. Also I think people played a lot of hide-things games with me.
Not manipulative in an adult or NT way, no. I think AC-preschoolers can try to be manipulative, they just aren't any good at it. (Applying the wrong technique for the wrong situation, very easy mistake if you learn about stuff like that from books.) I guess one could say that I was manipulative at 4-5 when I figured out that I would usually get an icecream when I went shopping with my grandmother if I just pointed out that they _did_ have icecream. OTOH I didn't learn to *ask for* icecream (or candy, or whatever) until I was 7-8.
I had picked up (from books I think) very early that you shouldn't be greedy and translated this to "asking for something=bad". By politely pointing out that something was available was a solution to that dilemma for me. (Not that it *always* worked - sometimes people missunderstood me, and that's why I had to revise the "rule" about not asking for stuff when I got a little older.) BTW, I still have trouble asking for stuff (in situations where I am not explicitly cued to do that, like when you get a selection).
Mmmm. I agree. What I was doing as a 4-6 yo with pointing out that icecream etc was _available_ was really to ask the adult to read _my_ mind - I had no thought for what _they_ were thinking.
I seldom did that as a child - I think it was explained to me very early that doing stuff like that was *bad*. I guess I might have done it at home a few times - when the stuff that I wanted was visibly there -, and perhaps also as a precursor to a general meltdown, that really hadn't much to do with the thing itself.
I really can't imagine how horrible it would be to be an AC child who *doesn't* reason and think about stuff. Or an AV child in an environment that doesn't try to _explain_ things (esp. other people's behaviour) all the time.
That was exactly what my parents *told* me, and in detail (explaining *why* it wasn't a good strategy, beside it being bad manners). I don't think I would have figured it out for myself until much later.
Good gracious, thinking about my childhood I discover that people were *constantly* explaining other people's state of mind to me!
"See, when you do x, people usually feel y, and then they do z, so it is better for you not to do x" and when I got a little bit older more complicated stuff, and asking me to guess about what people would feel/think.
At one stage my mother did a lot of role-playing with me.
Thinking back about it it really seems like intensive TOM-training ;-). It was usually fun, too.
Yep. As in me and the icecream, I had the notion that it was somehow greedy=bad to ask for stuff like that, so I had to come up with another way of communicating my wishes.
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"mandyque" a.hu...@ntlworld.com
Charlotte certainly understands basic things which are repeated to her a lot of times. We have mastered do you want a drink? She will bring a cup to me for that one. And the latest is 'Put it in the bin'. When she has a snack, I ask her to put the wrapper in the bin and she knows what it means and will do it.
Learnt behaviour is something that all ACs are good at, it just takes time to teach them. She will, with persistence, learn the actions to go with the words, at school it is 'timetable', then she has to go to her pictorial timetable to see what is happening next, the picture tells her so she knows what to expect. I think it probably is quite mechanical, but anything which bridges the gap between her and us is going to help a great deal as she is completely non-verbal. She is starting to be a little echolaic but without any meaning at the moment, hopefully we will get to the point further along where she will use speech but we are getting somewhere with communication in other forms.
Mandy
Ian Sharrock i...@sharrock.org
We're used to that behaviour (nothing could be done at all easily with Xavier if he didn't have his "routine"). As he grows older, he is learning to function better (in a socially acceptable way for *other* people, such as putting litter in a bin) but it's often down to routine, rather than understanding. It's not that he understands why litter should go in a bin - to keep the place tidy, for hygiene etc. - to him, litter goes in the bin because that's where it belongs.
Our problem isn't that it's teaching the routine, it's the *force* that's used. As far as nursery are concerned, it's just a battle of will - it doesn't appear that any allowance is made for Xavier's autistic traits. Their attitude is that Xavier is part of nursery, has been there for over a year, so he should know the routine and conform *absolutely*, regardless of his mental state at the time. If he's not conforming to their expectations at any point, it's not because of his autism - it's because he's deliberately choosing to be awkward. At which point his brain melts and ..... I expect that all the parents here know what happens next.
Their only other experience with a child with ASD is someone who is very low-functioning and quite compliant. He's totally non-verbal and doesn't seem to be very "interactive" (although I'm probably doing him a disservice saying that), so they could get him to do anything by just physically manipulating him - stick arms into coat, shove out into playground, no complaint from child. They seem to expect Xavier to react in the same manner (after all, they're both autistic, so they should act the same way.....).
They leave you with the feeling that his problems are down to Paula and I being bad parents - he wouldn't be causing them grief if we had taught him better manners, routine or conformance at home. I know I'm not the best parent in the world, but we don't deserve that attitude. It's almost as if they consider their own incompetence and lack of understanding is *our* fault in some perverted manner. Sorry, I'm ranting.....
It's just that when you've done everything possible to help them -
formal research, info about training from the local authorities, articles and information from our beloved "alien" (thanks Anna), you get *very* fustrated. The attitude that they're the professionals and you're just an incompetent parent is *really* annoying. My f**king granny knows more about ASD and ADHD than they do.
I don't know if "lucky" is the right word, but Xavier is quite high functioning, so he does have language (which was getting *amazingly* better before his therapy stopped at christmas). I know what you mean though - anything that promotes communication is great.
I suspect that Xavier understands more than he can express and that's where his communication difficulties cause problems. His "challenging" behaviour often stems from the fact he can't make his wishes understood
- a bit like a two year old child throws tantrums. It wouldn't surprise me if Charlotte is the same - understands to some extent, but can't communicate her feelings or wishes in a way that the NT world can interpret. Good luck!
Sorry for the rant everyone.... or maybe not. If there's one safe place you can let of steam it's here. You've all been there, done that.
Love to everyone :-) Ian
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"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Antonia, Pre-schooler = 3 or 4 years old, so your estimate of about 5 or 6 would concur with autistic development (which is delayed in that area).
Sam and Xavier both have significant Semantic-Pragmatic Disorder and language delay, which of course makes everything much harder because you cannot explain things to them in a way they can understand.
I haven't even observed Sam *trying* to be manipulative in the formal sense of the word.
I don't think that is manipulation, just cause-and-effect. You learned (because you were bright) that pointing out ice-cream often resulted in getting ice-cream. No manipulation there, just plain old, down-to-earth autie logic :o) Unfortunately, I lacked the social restraint to take this on board.
Consequently, I was a very greedy child!
Exactly, so it is not truly manipulation, although many adults mistake it for such.
You could not explain that to Sam or Xavier and I don't think Sam would particularly care if you thought it was "bad". The concept doesn't really enter his head. In fact, it is more like: getting cookie = good, not getting cookie = bad. He's a pretty basic creature is my Sam :o) I don't think my Sam is particularly unhappy with his lot in life - he seems pretty content as long as he's getting what he wants (which is most of the time). In a way, I think it must be easier for him than an older/more high functioning kid who can reason and think about stuff, but can also agonise and worry. Sam gets anxious about situations immediately happening, but I have never observed behaviour I'd call "worrying" (in the sense of thinking about anxiety-provoking things that might happen or are going to happen). He lives pretty much for the moment.
Like I said, you cannot explain things to a child who has poor language ability. Sam's tactic is to scream and hit until he's got his point across. It's usually pretty clear. OTOH, disciplining or directing his behaviour in any way is well nigh impossible.
My Mum did that too, which is why I cope as well as I do.
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"mandyque" a.hu...@ntlworld.com
No worries about the ranting, we've all been there! I know you have him in mainstream nursery because you think it is the best thing for Xavier but maybe it isn't. Charlotte is in an autistic unit in our local special school and thriving, I know she would never have coped in a mainstream setting. The government is trying to tell us that mainstream education is best for children with disabilities but it is definately NOT in many many cases.
Xaviers teachers obviously haven't get a clue so maybe it is time to consider whether a special education school may be more appropriate for him.
The teachers know what they are doing and understand children like ours and they get all the help they need rather than at mainstream where they may only get so many hours ***istance with a child who has difficulties.
It is a difficult decision for you to make but I would perhaps look at other schools who may have better facilities and staff who will care for Xavier in the ways that are best for him. You can always just look, you don't have to make a sudden hard decision, and if you decide against special education, it will be an informed decision based on your knowledge of your sons needs.
Good luck Mandy
"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Mandy, The problem is, as you know, getting a child into Special School is sometimes very difficult, particularly if your child is perceived as bright. Technically speaking, these Special Schools are supposed to be for children with "Moderate Learning Disabilities" (an IQ approximately between 60-80). There is no formal provision for children who have patchy abilities, such as the typical HFA kid, in most counties of UK.
So, you have to persuade the Local Education Authority (LEA) and a special school, that your child fits into one of their categories (Learning Disabled, Behaviourally Disturbed, Mentally Ill etc.). This can be hard or easy, depending on the LEA and the school. Somebody has to be persuaded to make compromises and squeeze your square-peg kid into round hole. Hence, I'm fighting to get Sam into a MLD school, and I'm trying to convince them he is LD with savant skills, rather than very bright with deficits (which is probably technically more correct). My friend has got her atypical HFA/ADHD kid into a school that *technically* caters to emotionally disturbed children (but we found out that 75% of their kids are ASD, and another 20% are ADHD or Tourette's, with only about 5% so-called "EBD" = Emotionally and Behaviourally Disturbed). Another friend got her socially vulnerable and severely dyspraxic HFA child into a school for physically disabled children!
I am currently fighting to get Sam into a MLD Special School, and the nursery has a place that he could use. However, the beauracrasy ("Beurocrazy" as I'm starting to call it) takes forever and a day and there is no way you can put a child into a Special Nursery without an Educational Statement of Needs.
To get the Statement, first of all you need to get your child formerly diagnosed. That can be difficult with HFA kids where the average age of diagnosis in UK is about 6.5 yrs. Then you have to persuade the LEA to ***ess your child formerly (they often turn you down at this point since they are not experts on autism and cannot understand the disability).
Then you get a formal ***essment and when it's finished, they decide whether or not to give your child a Statement. Then you get a chance to ask them for the Special School, but if there are not the places or if they disagree, you can be turned down and forced to "mainstream" your child. You can go to a tribunal (over 85% of tribunals round here are won), but that whole process can take 18 months, during which time your child could be suffering, or missing out on essential early years education.
Most Special Schools do not have specialist autistic units, and those that do don't cater to HFA children. I was not impressed by my "local" (ie. 45 minutes drive away) autistic unit - the children were mostly p***ive, non-verbal, not HFA/ADHD like my kid. Ironically, the MLD school has a better approach for a kid like Sam.
Particularly children with ASDs and other emotional/behavioural problems such as severe ADHD, plus conditions such as severe Tourette's Syndrome, severe epilepsy and even low IQ (Learning Disabilities). I know of a Down's Syndrome child in high school who sits at the back of the cl*** and does colouring in. I am angry about it because she is *not* receiving an education and is not being enabled to reach her potential.
I consider her a victim of this government's Political Correctness, but her parents don't seem to be able to question what they've been told is best for her.
I have no problem with mainstreaming if the environment is appropriate or can be made so, but for many of our kids, the standard model education system is just not appropriate. Our kids are disrupting cl***es, being punished for stuff they can't help, bullied by pupils and teachers alike and in the end, they have a nervous breakdown or are excluded. Even a "good" mainstream school could not handle my Sam - he is just too demanding and his learning difficulties mean he needs very specific, one-to-one teaching.
Personally, I think there is an education time-bomb in this country. So many kids are not receiving the education they deserve and it's all about money (short term money, what's more). The government pretend it's about equal rights, but it's nothing of the sort IMHO.
Personally, I'd get Xavier out of that school ASAP. I think he'd be better even at home.
I agree that people don't generally think highly of Special Education, but most parents I've met who actually have kids in Spec. Ed. rave about it. I think I would have been so much happier in a Spec. Ed. school.
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Anna Hayward, Alien Visitor
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The alt.support.autism FAQ is at http://www.ratbag.demon.co.uk/anna/asa/
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Ian Sharrock i...@sharrock.org
You've seen the comments from Paula and I about how we feel Xavier has been getting on in nursery earlier in this thread. Severely unfair, but I've just received this email from the healthcare professional that's in charge of the special needs department that controls provision for Xavier. We have a meeting with this person and school/nursery on Monday coming to discuss his provision. Comments and advice *welcome*. Reading the email reduced Paula to tears.... :( I don't want to antagonise this person - we've had pretty good help until this year, but the wording "if we allow him to be Autistic"....
<sarcasm> F**king hell everyone, she's invented a cure ! (if I come across as stressed, then you're dead right - I am).
Oh - it's unedited (apart from removing the name of the person involved), so any mistakes are not of my doing.
Ian ============================================================== I also feel it is an area we need to adress and I am concerned that Xavior is not always being challenged regarding his behaviuor which is still often on hios terms only. If we are to make a success of mainstream school we really need to have his compliance ALL the time not just when he feels like it. I will expand more on this in the meeting on Monday but it is vitalthat the staff really take this on board as if we allow him to be Autistic he will and yet I feel he is very able and bright and we can move him on a long way but we need to get rid of the avoidant behaviuors which are a barrier to his learnig and social interaction.
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Ian Sharrock. Permission to send unsolicited commercial e-mail to this host is explicitly *withdrawn*
"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Ian, I don't think she should cry - I think she should threaten to rip the head off this idiot! If I were you, I'd get in contact with the NAS as soon as possible, if not before and get an advocate. This person should *not* be in charge of autistic children, any autistic children, with that attitude. She's positively dangerous.
Ask her what her qualifications are regarding autism, and try to get an actual autism expert on board. I'm sure somebody out there would be prepared to support you, from a professional POV.
Of course it is. He's autistic. Maybe you could get some documentation to support your POV?
I agree with that. If Xavier is to cope in mainstream school, he needs to outgrow this behaviour. Which is why I won't put my (very similar) Sam in a mainstream school. See, the other way you could read this is "Xavier won't cope with mainstream", which is nowhere near as threatening, IMHO.
The thing is, whatever this person suggests, it *won't* cure Xavier's demand-avoidant behaviour. So, whether it takes a long while, or a short while, they'll have to accept that Xavier has to do things on his own terms.
Great line. She should be a comediene. It sounds very much as if you've come across one of those "Refridgerator mother" dinosaurs. She should really get with the program.
Yes, if you cure his autism I'm sure he'll do just great :oP This person seems to believe that lack of social skills are caused by demand avoidance, which in turn is caused by being "allowed to get away with being autistic". Autism, presumably, being a result of crappy parenting :oP Paula and Ian, please don't get upset and self-blaming about this. I read in another post that you thought you were "OK" as parents. You are not "OK", you are brilliant. This shows through clearly in your posts and emails - no one could ask more of parents to an AC. Don't let these ignoramuses guilt you. It's not fair and it's not right and in the long run, they're going to be the ones with egg on their faces. But do consider getting Xavier out of that poisonous situation - I can see no good coming of it, and my mother agrees (I read your posts to her). She says that she can envisage Xavier obtaining any benefit at all from this pre-school and she is concerned for his future education. No child learns anything in an environment where they are constantly criticised and punished. She also says she has the impression that the school don't like your little boy very much. I don't know if this is just the impression you give, but if it is true, do consider the consequences.
She and I wish you all the best and my mum reminds you that these situations invariably sort themselves out in the long-run, as long as you stick with it. It took my mum 34 years to be vindicated about me (I was diagnosed with AS 18 months ago), so she knows what she's talking about.
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Anna Hayward, Alien Visitor
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The alt.support.autism FAQ is at http://www.ratbag.demon.co.uk/anna/asa/
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term ...@chartermi.net (termite)
(slaps head!) That's where I went wrong! I allowed my daughter to be autistic!
My sympathies, Ian. You appear to be dealing with idiots. Perhaps before they get around to "curing autism" they should cure idiocy first as it seems to be a more prevelant problem.
First, they're going to have to get a real understanding of the problem, aren't they? They need education badly and you need to find new people to deal with if at all possible.
"mandyque" a.hu...@ntlworld.com
thanks for the comments Anna, I happen to think that special ed is the best thing that has ever happened to Charlotte, but tragically it seem that it depends on where you live as to whether you get good quality services and education.
Our school has the autistic unit for those severely affected with autism, usually learning difficulties too, then also cater for the higher-functioning auties in mixed cl***es with children with other disabilities. The cl***es are ability-related rather than age like in mainstream school which I feel would be a good thing for mainstream schools to do as well, my son is the brightest in his year in mainstream but is held back by those who are less able and this affects his AD/HD making him fidgety and disruptive. That is what I know to be the case in mainstream school so if they cannot cope with a child with a *milder* condition, they will never cope with a child with disabilities.
I am lucky to have Ash Trees, Charlottes school, locally and it makes me angry that it is not made compulsory for every child with special needs to be entitled to a place in such a school if needed.
I do agree that some children who can cope with mainstream education should be at an ordinary school but it depends on the quality of the school, my local mainstream schools leave a lot to be desired.
Our present govt in the UK is so keen on inclusion, that those who will always need special education and/or support in school are getting forced into mainstream schools which are no good for their needs and the schools are ill equipped with resources, skills and support for them. Yet again it is a veiled attempt at cost-cutting in special education which is causing suffering among children who are not getting the help and support they need.
That is why I suggested that Xaviers parents perhaps could look at other education options as the present situation for them is not acceptable.
Mandy
"mandyque" a.hu...@ntlworld.com
'ALLOW HIM TO BE AUTISTIC'?????????????????? What planet is this idiot from????????? Would she say to a physicallydisabled person 'If we allow him to have cerebral palsy'???????????????????
Autism is a disability, not just an excuse to disrupt her cl***es and it is obvious that this stupid ***** is stuck in whatever point of view she has and will never understand what autism really is. Pull him out immediately!
I tried to be gentler in my last post but this is the most appalling attitude I have ever come across. Don't get upset, get angry, she has no right to treat Xavier this way and I do believe that if this went to a tribunal, she would be sacked.
The report from school that you have shown us makes me SO ANGRY and something needs doing to protect any other children with special needs whose parents are considering placing their child in this nursery.
Sorry for shouting but this is the most ridiculous thing I have ever heard, especially from someone who claims to be experienced with autistic children ( I would get the other child out of that school too if it was up to me!) Mandy
"Anna Hayward, Alien Visitor" A...@ratbag.demon.co.uk
Hi Mandy, first, a housekeeping request: do you think you could please put a blank line in between each paragraph - it makes it much easier to read (that is, press the Return key twice at the end of a paragraph).
I believe that if you are prepared to fight hard enough, it is usually possible. The problem is that parents aren't always aware of what educational provision is available in their area, and there is an awful lot of prejudice in parents about Special Schools. I wish I knew why this was - perhaps it is the final confirmation that your child is "abnormal"? Perhaps some NT parents who perhaps held this view at one time could explain it to me?
For instance, I know a little girl who is severely autistic and non-
verbal and who's mother was perfectly happy to "mainstream" her - which seemed completely nonsensical to me at the time. Later, the child was found to spend most of the school day hiding under the table and actually regressed, so she was transferred to a Special School. After a few weeks, she'd made tremendous progress, thus proving it was the right placement for her. What was the mother thinking? I tried to ask her, but it was not possible to be direct and she didn't get my hints (or chose to ignore them).
See, what I want in an ideal world is a separate cl*** for HFA kids, but since one isn't available, a mixed special needs cl*** will have to do.
My local special school puts kids in cl***es roughly equivalent to their actual age, although they are much less rigid about it than a mainstream school.
I went to a school that did that, way back in the 70s. It was not successful because of the developmental differences between children, regardless of academic ability, and it was discouraging to me to be an almost-8 yr old in a cl*** of largely 5 year old. In fact, it convinced me I was stupid and my mother said my behaviour regressed and I became more immature (probably in an attempt to fit in with my younger cl***mates). I was later diagnosed dyslexic and given special, one-to-
one help out of school hours. I was put back into a cl*** of my age-
peers and it was a lot better (I was also bullied less).
That is the gifted child's dilemma wherever you are. My daughter Alice has decided that it is possible just to "get by" without straining anything (what I call the "Homer Simpson method"). She could be a high-
flyer if she actually bothered, but at school she prefers to sit in the corner reading and colouring the odd picture, whilst gossiping with her mates. This is somewhat worrying that at 5 years old, Alice has discovered that bright people don't have to work, and I'm hoping Year 1 will be more of a challenge for her (that's when they start the National Curriculum proper), but if the worse comes to worse, she's exactly like my sister so I suppose she'll just have to go into law :oP I don't think it's the "mildness" of a condition that is the deciding factor. I think it is the type of condition and the type of child.
Not to mention schools using the Special Needs money to build a new gym, or whatever. Or Statements that say a one-to-one LSA is provided, in areas where recruitment is so poor, they can't get anyone.
It's the "Care in the Community" policy all over again. Remember that, a few years ago, when they decided to empty the long-stay psychiatric hospitals and homes for mentally handicapped (as they were then called), but provided no community support for them? The homeless charities *still* report a vast proportion of street homeless as former long-stay mental patients.
So adults with Severe Learning Disabilities get thrown onto the street, or made "voluntarily homeless" because their behaviour problems get them evicted; and children with Learning Difficulties get to have no education and excluded for having behaviour problems. And both policies saved money in the short-term, but have caused/will cause major social problems in the future, which I suspect will cost far more (but by then it will be a different government, so they can blame the present administration).
I agree, but Ian and Paula haven't come back to us on their opinion about that idea. I believe it can be quite shocking for some parents to be confronted with this kind of thing, made 100x worse by the way it is being handled in their case.
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Anna Hayward, Alien Visitor
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The alt.support.autism FAQ is at http://www.ratbag.demon.co.uk/anna/asa/
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Terry Jones terryjo...@beeb.net
Depends how much emotional "investment" she has in this. But *sometimes* when someone has done / said something silly, it helps to let them "save face" by going on as if it hadn't happened.
Perhaps you could respond by sending her a new email (not a reply, which would acknowledge that you had received hers) - detailing *your* concerns for the coming meeting and asking for her help?
Which mainly appear to be: The school seems pridefully determined to ignore input from a "mere" parent - even when that information represents the most current advice of world acknowledged experts.
The school refuses to accept modern understandings about Autism, but continues to act on the basis of the archaic and discredited idea that it is purely a behavioural problem.
Instead of *helping* him to find ways of working around his disabilities, the school persists in trying to *punish* him for being disabled.
At least that would give her the chance to rethink things.
You may (or may not) want to ask her what agencies to bring in if the school does continue to be uncooperative. - Not sure about this bit, "hints" aren't really an Aspie thing <g> Terry
"mandyque" a.hu...@ntlworld.com
OK, sorry about that one. I thought you were going to tell me off about the pile of laundry in the kitchen lol!
When I was a child, the local special schools were labelled (very offensively) 'spakker schools' based on the old name for cerebral palsy (spasticism). I know now that this is appalling but when you are a child and everyone else calls them that, then you accept that it is the name for those types of school. It is pure ignorance and I feel annoyed that my parents and my friends parents never explained to us about disabled people, we never came across any in our everyday lives so how else would we know?
This image of special education sticks in peoples minds in adulthood unless they actually go to one and experience what wonderful places they actually are.
<space> :) I know now that this was very wrong and through my own daughter needing special ed, I have come to realise what valuable work these schools do. I realise that 50 years ago my child would have been written off as 'mentally handicapped' and put in an institution or ostracised from the community. It is only through working at it that we have changed this attitude but there is still a lot to be desired and a lot of stigmas to destroy before special schools are finally recognised for the good that they do.
This is why I worry that Xaviers parents are maybe still influenced by these stigmas and are reluctant to consider special ed for their son because they believe that he will be stigmatised. I just wanted to point out to them that there are options which they may need to consider for Xaviers good.
Mandy
Suzanne s.removethis.da...@uclalumni.net
Ian Sharrock quoted somebody clueless on the concept when he wrote: If we allow this supposed "professional" to be ignorant and arrogant she will continue to be ignorant and arrogant. Yet, I feel she is very able and bright and we can move her on a long way, but we need to get rid of the misguided behaviors which are a barrier to the children's learning and self-esteem.
Suzanne
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