Sally44

Anyone can have autistic traits. But surely it is on a sliding scale and if you have enough of them, in the triad of impairments, then you get a diagnosis. My understanding is that there is a suggested possible genetic weakness, along with possible environmental triggers. When talking to parents there are definately different feelings about when autism began to be evident and what they feel was the cause. For some children that regress immediately after vaccinations that is bound to bring questions from the parents. Would those children have regressed anyway without the vaccination, you never know. My son was showing some autistic traits before the MMR, but I only know that now with hindsight. As for family, well. We have a number of things going on, and the doctor explained it to me like this. He said that when you have an individual, or a family with something outside of the 'normal' (my words not his), eg. developmental delay, mental illness, chromosome differences etc - then there is a greater chance of other things being present as well. That is why children with an ASD have a higher chance of having a co-morbid condition. What surprised me in my family, was that I had assumed we were all okay, but post diagnosis of my son I found out about a number of diagnosis within my immediate family that I didn't even know about. And we all had to go for screening for a chromosome disorder that was found. Also, as part of the initial assessment of my son I was asked about other family members.

The fact he says he wants to be good and wants to go into school does seem to suggest that school is missing something. Something is setting him off which might be schools expectations of him when his daily schedule does not have enough routine, visual reinforcement etc. The fact that you say school is not following through is worrying. Is the behavioural unit only for children on the spectrum, or is it for children with behavioural issues whatever the reason?

Have OT been involved in looking at her classroom environment and in talking through and assessing her sensory needs? Are there any schools in your area that are mainstream, but which also have an autism unit? At my sons current school (Enhanced Resource) which is mainstream with around 5 children with ASD per class, around 2 classes that are mostly HF ASD and School action plus, and an autism unit - there is a fair amount of flexibility. For example some mainstream children go to eat their dinner in the autism unit because the smells in the main food hall are too overpowering and the noise too much for them. My son wears DIY ear defenders during assemblies and dinnertime, that allows him to cope. The Autism Unit has a sensory room and play equipment (ie. large trike) that my son and another boy to use as a motivational treat. There is alot of tweaking that can be done in a school that has experience of teaching children with autism. I know there are less options around by secondary age, but it is still worth looking around. As your daughter is taxied to school, I presume she is in some kind of enhanced resource environment??

When you meet this teacher, try to let her speak first. If you wade in saying that she is bullying your son, she is going to get defensive and may not say some things that could turn out to be useful. So ask her how your son is doing in her class and if she has any difficulties with him. If, for example, she brings up the fact that he is always fiddling with things etc, then that is something you can talk about, as from my experience having 'something to fiddle with' is usually a support strategy for children on the spectrum, and therefore is not something he should be told off about. My son is usually given something like theraputty to handle. Then explain to her what your son is saying is happening in class. And that might not be how it is actually happening. But I think it is important to consider that that might be "how he perceives it is happening" even if everyone says otherwise. For example if a teacher tells off the whole class my son can interpret this as the 'teacher is angry with me'. Or she may well be reprimanding him, but your son cannot tell from her words or tone of voice how serious the reprimand is. That is something the school and teacher may need to recognise and work on if that is the case. Is your son able to repeat to you what she has said to him? It is a pity about the social club. Is there no way that they can involve other children in this. Is he the only child in the school with a diagnosis? Although you say it is pointless just working with his TA, that might not be the case. It depends what they are doing in the social club. If they are teaching conversation skills, for example, then he can learn that with any age group. But what would be important is that any target or skill they are teaching in this group has to be generalised out into other environments and therefore he has to be observed and seen to be using these skills. First he may need to be prompted, then he needs to be demonstrating them independently. Try to stay unemotional and objective when you meet. Hopefully it will go positively. But whatever the outcome make sure you send a letter into school afterwards eg. "further to our meeting of xxx we discussed the difficulties my son was having of x, y and z and it was agreed that school would a, b, and c, and that I would d and e. If you feel that difficulties have been raised that outside professionals need to look at as school do not appear to understand them, then ask the school to do that and include that in the letter.

My son also finds it hard to recognise where a word starts or finishes and can mix up sylabels. So tonight for tea I asked him if he wanted pasta. He said no, what else is there. I said that mum and dad are going to have steak (its my birthday today). To which he replied, "I'll have pasta, I don't want any misteak." (as in mistake). I really wonder how his brain works sometimes!

That may well be part of it, as difficulties processing language are going to mean you are out of time with everyone else. And I know my son has processing delays as well. I'm just raising the question as to whether it might be a 'red flag'.

I am making a distinction between liking music and rhythms. My son likes those too and plays drums. But he has severe language difficulties, and I always wondered if his difficulties with understanding of speech was the reason why he never sang. He has just started saying some words from songs eg. "mama mia, here we go again". But that is because he has heard and understood the "here we go again". So I am specifically asking if severe language difficulties would also show themselves in a lack of singing. For example he never sang nursery rhymes, or indeed sang anything. Whenever there was or is singing at school he just sits through it. Eventhough he enjoys the music and the rhythm, he cannot join in verbally.

No I don't mean learning difficulties. I mean specifically speach difficulties ie. those using echolalia etc.

Our local authority has a benefits advice section that helps with the filling of all types of forms. You have to make an appointment to go and complete the forms. They are not employed through the benefits agency so you can talk to them without fear of putting your foot in it. But I don't know if all LAs have this??

I really don't know. I always saw it as just a fun/scary story. But reading it with my son, and bearing in mind his literal interpretation of stuff, I thought "this is saying that disobedience, crime and murder pays". I did check with him, and he did understand that stealing the hen that lays the golden egg, and the harp was wrong. But Jack does alright out of it doesn't he. I'm not looking to change fairy tales, it was just a sudden realisation of how they are if you just take them on face value and sometimes I think that me and my son are on the same wavelength, and then he says or does something and I think, Oh no he isn't!

I think parents need choices instead of feeling pushed into a provision they are not happy with. And alot has to do with current fashions or trends. My sister did fine special ed. She now lives and works independently with support. But to hear the inclusion officers talk now, they make you feel like special ed makes them totally removed from society!! Not true. At the time (early 1960's) the doctor told my mum 'if your daughter remains in a mainstream school she will always struggle and will always feel like she is at the bottom of the heap and may well learn nothing'. Does that sound familiar. In a special ed environment she was allowed to blossom and shine. She didn't pass any exams then, but she learnt to read and write. Through her work she has gained some basic computer qualifications. (I hope and pray that my son (who is actually more intelligent than my sister) will even reach the same level that she did special ed within the mainstream system). There are lots of different school environments for mainstream eg. girls/boys/faith only. I think we just need more options, especially when some LEAs are paying a huge amount of money per annum on paying private school fees because of parents that have won a private placement for their child because what the LEA offers is not suitable. I feel this is such a missed opportunity for LEAs to set up their own HF ASD only schools.

Sounds like my family too! I thought we were all so normal until my son was diagnosed

As my previous post was seen as confusing, I will just agree with this one.

Well I could have written any of your posts myself!! You could write to your local authority (find out who to address it to), and you could also copy in your MP. They should be made aware of parents feelings. I met with the Head of Commissioning at my LA and said exactly the same things, and was told that most parents want their child to go mainstream. However all the booklets about schools in our area, don't even have any advice about which ones have greater experience or expertise in ASDs, which I pointed out to her. In our area we do have schools that are called Enhanced Resource. This is a halfway house between mainstream and special education. But this is at primary level. At secondary level I cannot see my son copying at all, and the only alternative seems to be for lower functioning children - and I don't mean to offend anyone. But there are no ASD only schools for children who are higher functioning, but not able to benefit from the mainstream environment. And I too was told that my son 'would learn from role models'. Well how can he do that then? Because if he could he would have learnt from his family and siblings and wouldn't have got a diagnosis! Parents need choices. And I also said about how it must be more cost effective to have an ASD only school and how it would reduce the amount of parents going to tribunal. As each tribunal costs the LA about £10,000. But they would rather pay that and fight to deny our children and us an environment that I believe would work better. I know that our LA funds 5 places at one private school (for high functioning secondary age children who cannot cope mainstream), and the fees are around £42,000 per child. And that is only one school! Makes my blood boil. You can phone round and visit other schools in your area and see which ones have more experience and expertise in teaching those on the spectrum. I too don't understand why there is this need and constant pushing for conformity. That will all end as soon as they leave school. They need to be taught ways of coping and how to interact as and when they can. Not forced to such an extent that they are constantly under pressure, or full of anxiety, or having meltdowns and inappropriate behaviour. There is another topic about children not being invited to birthday parties. Who is kidding who about inclusion. Our kids are not included. Then, at other times when you actually want them to do something about difficulties they have, it is just ignored or taken as typical of being on the spectrum. I had exactly the same discussion about my son in his previous school about assemblies and school dinners. He sat with his hands over his ears the whole time. But they wouldn't allow him to sit it out in another classroom because he needs to get used to 'whole school experiences'. So I sent a pair of DIY ear defenders into school. And the school complained that they 'made him look different'. So I got the OT to speak to school about it. Then the OT said she wanted to start a programme to wean him off the ear defenders. And I said there are 100 things more important and more difficult for him that need addressing before we start on 'trying to make him look normal'. What are the priorities of professionals, and what motivates them? And when I asked for him to be supported in the playground because he would walk up and down the fence repeating TV dialogue to himself. I was told 'he needs to be allowed to be autistic'. Why, to save you money?? So I finally managed to get in his statement that they do have to support him during dinnertimes and breaktimes. And I have said that if he spends a significant amount of time stimming in this way that he is to be offered an alternative ie. "do you want to play", and if he says yes, which he usually does, this proves what he prefers to do and therefore they have to support him to ensure he is successful. But unfortunately there are too many children and not enough places. In the autism unit in my son's current school it should be for children like my son. But it is presently full of non-verbal children who are an overspill from the special education school. But why does my son have to miss out on that type of environment just because there aren't the places available. I did go to tribunal and to be honest, my son now has the same level of support (and in some areas more), than the children in the unit because I had evidence that that was the level of support he needed. But it was hard, and costly (because I had to resort to private reports and a solicitor). But I will have the same difficulties when we get to secondary age.

Let us know how it goes. Are you asking for an emergency review of the Statement? As it seems that either the provision in it isn't adequate, or the school haven't been doing what was required of them, or the placement is inappropriate. And if you are looking at alternative placements, you go on what kind of environment the child needs - not on the type of school environment that is available. Not having any places left is not a valid reason for you to accept any placement just to keep him in school. At Tribunal the Panel can make an award which forces the LA to make a further place. If your own LA does not have anything appropriate you can go out of county (I think Bid did that???). But it is very important that you read everything sent to you, and don't sign anything and check anything you are told via the agencies already mentioned. And one more thing I would add is whether you consider his inappropriate behaviour is due to lack of support, or do you consider even with the appropriate level of support that his behaviour might be inappropriate. I am saying that incase they offer you a place in a specific behavioural unit, and again that might, or might not be appropriate depending on your feelings about the cause of his behaviour and on the peer group within that, or indeed any placement.

This is something I am just curious about as to whether it could be seen as an indicator of the severity of a speech disorder. The reason I ask is that I have noticed in another parent support group, that as the language difficulty becomes more severe, the children tend not to sing songs at all. This doesn't appear to be related to whether or not they like to listen to music, or whether or not they play an instrument. I am assuming that this might be because song lyrics can be rather like poetry, and for someone with a language disorder, the words may not make any sense to them at all. Therefore there is no motivation to sing if there is no understanding behind it.

It can be a bit of a rollercoaster ride can't it. My son has issues with tastes, textures and smells of food. But he does eat a wide range of foods. But he will run away from certain smells eg. mushy peas! When he was younger smells and textures of food would make him vomit within seconds. (Also if he got upset he would vomit as a reflex action) - I remember well those years of vomit, always having to have a second pair of his clothes with me. Anyway, what I found worked, was to always let him have a paper napkin when eating, and to encourage him to smell and try food by putting it in his mouth. If he began to gag, or was even panicking about gagging, then I allowed him to remove it immediately from his mouth. This worked. It allowed him to try foods. Sometimes the next step is just seeing how it feels in your mouth, but the child can't cope with the chewing or swallowing of it. Being allowed to spit food into the napkin helped move him on enormously. And I also believe that anxiety is also a large part of it. Once a child has tasted something bad, or gagged, or vomited, they are afraid of it happening again. My son now eats brussels, cabbage, porridge, carrots, etc. I can't get him to try anything like beans, peas or sweetcorn, but he eats just about everything else. I think it is the outer shell coming off that he can't tolerate. But, i'm hopeful in the future. He also likes each individual food item to be separate ie. he doesn't like unidentifiable bits of food as in soups or pies.

Don't be upset. I know I wrote it literally, and you have taken it literally, but that isn't exactly, completely, what I meant. Of course this is a place for people to meet and discuss things, good and bad. I suppose, if everything were going well in my small circle, that I might still be here - probably would. But the main motivation at present seems to be coming out of a drive to find out more, and a need to understand the whole process as it does seem like a never ending maze sometimes. I also have the strong feeling that my own family were treated very unjustly, and I feel driven to inform any other parent who seems to be having a similar experience. I think it is just the stage in the process I am at.

Something I was thinking about today. I had read the story of Jack and the Bean Stalk to my son. On reading it, I became aware of the fact that this story is about a boy who doesn't listen to his mother and disobeys her, goes to another mans house and steals something to become rich, ends up killing the other person and the story seems to celebrate this! Set me off thinking about others ie. Goldilocks and the Three Bears. Why are the bears considered to be the bad ones? Goldilocks went into their house uninvited. Ate their food, and broke their furniture. Yet she is considered to be hard done by because the bears scared her?? So I did alot of checking with my son whilst reading this story as to what he thought about it. But I thought I'd ask other parents what they think.

No-one tells the truth all the time. Or if they do they probably get socially ostracised. There was an ad campaign run by the NAS in which it showed some work colleagues sat at break together, and one woman was asking a work colleague for her opinion as to why her boyfriend had ended the relationship. The 'autistic' adult in the room said 'maybe it is because you are fat'. I don't know how typical a response that might be. Obviously the NAS thought it was. I don't want this to come across as patronising as there are differing degrees of social ability throughout the NT and ASD communities. But I see the difference as being the difference between social animals and achieving social status and pleasing the social crowd. Someone on the spectrum may not understand those aims, or have those goals or be motivated to engage in that kind of chit chat. I think alot of the skills also boil down to abilities in the area of Theory of Mind. A recent example of my own I will mention is forgetting to get someone a birthday card. When I realised that I had done it I didn't own up to the fact that I had forgotten. I said I had left it at home by mistake. I did that to save the other person from feeling forgotten, and to save my own reputation from appearing as someone who isn't caring or who is totally unorganised.

I have one more comment before I get the kids ready for bed. Back to the original post about 'run in' in the playground. I just wanted to throw in a global view. If systems and procedures are so capable of solving difficulties I would mention Prime Minster Chamberlain when he returned from his meeting with Hitler with the famous piece of paper declaring that there would be no war. Which turned out to hold less weight than a piece of toilet paper. My point being that some people enjoy the power of chaos and violence and anger and aggression. And what about NATO. When 'piece in our time' is put at the feet of an organisation that declares that if any nation causes violence then the whole of NATO will retaliate with greater violence? Personally I do hold alot of weight with systems and procedures because I spent a large portion of my life working in a law firm. But if they worked as they should do, then this forum would be redundant. With that I'll take a bow and pull the final curtain. TTFN

If I had to try to explain autism, I suppose I would liken it to the wiring in a house. That leaves the house 'person' autistic. But that house can be any kind of house, it can contain many different rooms. Some rooms may have no wiring at all 'which I would lead to represent areas of severe difficulty', in other rooms there could be wiring all over the place, which I would lead to represent areas of excellence. But any one of those rooms could be dedicated to a different subject ie. music room, etc and I wouldn't say that the 'subject' of the room indicated the autism. I see autism as the way the person receives and perceives information, processes it and responds to it. BD, I understand what you are saying about music for example. It is true that if an autistic child is good, or brilliant at something it is considered an autistic talent. But I just want to throw in the whole area of the 'spiky profile'. Most children achieve to a similar level in most subjects, and therefore they are said to be on a developmental percentile etc. For autistic children there is often this spiky profile where there are areas of difficulty and areas where they do very well. For example, with my son his percentile scores range from <1, to 92. That is a huge range of difference. And in the areas he does well at and would be top of the top class, I have always looked at these skills as being so good because that is how his brain is wired. Which by definition is autistic (and professionals have told me these are typical areas of autistic ability). If he didn't have the autistic wiring would he do beter in his areas of difficulty, and in his areas of ability would he be less able? And I don't know if the musical ability you mentioned is even the same type of ability in NT or ASD children or adults. For ASD children it is usually tied to a learning 'type' and not just a musical ability ie. an NT child learns in a typical way and is also brilliant at music. An ASD child may not learn typically but can learn many things (not necessarily associated with music) through music because that is their learning style. But I do follow what you say and am mulling it over as I agree to it to a large extent, but there will be a loophole somewhere! I don't see autism as something like a wheelchair, or our experiences. What I mean is that autism 'is'. Every individual will have a different personality and experiences, and they will be the sum total of those experiences. But if you consider that autism is the wiring in the brain, then the person with an ASD will have perceived and interpretated the experience in an autistic way.

I think schools should be addressing any child's behaviour, regardless of where it is coming from. But I know of at least two parents who have had to move their children to another placement because the school was not doing anything about other children bullying their child. Alot is about motivation. No-one feels very motivated to intervene for a child that has a family that frankly doesn't give a damn, because the chances of any change are minimal. And many times the bullied child is assumed to 'have asked for it by being different'. (And, although this is a side line, until recently children of parents who were drug addicts were not even considered to be 'at risk' and social services were not automatically involved). But I also agree with bid's comment. Parents are responsible for bringing up their child, and sometimes have to take it on the chin when school, or anyone else, brings their own child's behaviour into question. As I also have an older sibling who is disabled and went to a special school, I clearly remember the things that were said 'as common slang' ie. spaz, mong etc that hurt everytime those words were said. And what do you do as a sibling, do you continually try to educate the word, or join in and laught, or walk away and keep your own company. I remember the comments made by other children to me, or being excluded personally or as a family. I also remember the ridiculous way that school used to treat me as the automatic 'pal' to any special needs child "because of my sister". Children have a very deep need to fit in and not stand out from the crowd. I firmly believe that each individual is the sum total of their experiences. I also believe that those on the spectrum, although of course they are individuals and are unique, have every aspect of their being affected by their diagnosis. In the same way I wouldn't say I was XXX with NT. I am NT. Isn't that what pervasive means? And in other posts we have covered behaviours by those on the spectrum, and I think that their diagnosis always has to be considered, not as a get out clause, but as a way of seeing how they interpreted the situation and therefore how they can be taught that what they did was inappropriate and shown/taught a more appropriate way.

Yes, it would be typical of a child aged 4. My son is 8. We had a discussion at a restaurant recently. My son dropped his fork on the floor and said an expletive! Which I told him was a rude word and that he should not say it. So he informed me that he knew another rude word. So I asked him to tell me what is was. And it went like this: "falling out of a tree and hitting a million branches on the way down." I said that's not rude. He began to get upset and said 'it is'. So I took my usual tack of asking "where did you hear that". So he says:- "I heard it on Basil Brush. On the programme, XXX came into the room and XXX said "You look like you've fallen out of a tree and hit a million branches on the way down. And XXX said that that was rude." I didn't even know where to begin to explain that one! He also tells me the punch line of jokes which he has heard on TV, but doesn't tell me the beginning of them!

Our sons final statement was only agreed in February, so we haven't had an annual review yet. But as your concerns are also about what is actually discussed at this review, and my understanding is that the annual review does look at the provision in the statement and whether that is still applicable, would it be worth involving the Parent Partnership to come along to the annual review? I know parents have differing opinions on the effectiveness of the parent partnership. But if you discuss it all with the PP prior to the AR, so that you and PP know what you want to discuss, and the PP can advise you on all those questions. Then at the meeting get the PP to take notes of what is said and agreed, and they can also challenge anything said by school or other professionals if necessary. But I would discuss the statement and your questions with the PP beforehand so you are more clear about what you want at the meeting. So I think alot will be down to planning beforehand. Otherwise the meeting can just drift along with none of the issues you want to raise being covered at all.