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<'> <'> It's hard when you're faced with such reports but they do tend to focus on what's wrong and not balance it with what's right, hopefully it will get the support your son needs. A's Doctor always puts a little note in with these reports saying that she knows it seems unduly severe and pessimistic but in her experience little is gained by emphasising how well things are going.

I have seen two GPs at my surgery with A. Both admit that they know very little about AS and will only see him for unrelated medical matters. However, they are both very good with him on these matters and treat him with consideration and empathy and do take account of his AS. Both have told me to tell the Receptionist to book his appointments as the first of the day so he doesn't have to sit in the waiting room and any problems with doing this to speak to their Secretaries who will make the arrangements. Anything related to his AS or anxieties I deal directly with his Consultant. Whenever I see my GP, which is extremely rare, he is always anxious to ensure that I am getting the support I need with A and always offers to try and circumvent the system if I'm having problems.

Wow Lauren, for a week that you needed to sort yourself out in as you were but not in a good way, you certainly achieved a lot. It's a great deal that you've hammered out for William and fingers crossed it all works out for you both. I think it's great that schools are starting to work with parents and agree to innovative approaches and it must be a great relief to you to know that William's new school is prepared to listen to you and work with you. Enjoy your half term of home ed and I really hope the flexischooling works out for you and William in Secondary school.

Well done Stephanie. Just did a search and found and read your article. I'm sure that someone reading it will recognise the signs in their child and it will help.

A's OT decided not to reassess A's fine motor skills when she was asked for a report for statutory assessment. She did however assess his sensory profile and gross motor skills. Her reasons for not assessing his fine motor skills was that it was obvious to everyone that he had significant problems that didn't require an OT assessment to identify, that he'd already had the standard intervention(sloping desk tops, propriceptive, sensorimotor handwriting programmes, specially adapted writing equipment, general finger, hand and shoulder exercies) that had failed to show any improvements and due to his anxiety and his dx of dyspraxia, she felt the time had come to say he needed to use a lap top to access all his work. She refused to advise on any other interventions because she felt that this might give the impression to the LEA and the school that A did not need a lap-top and that his problems could be overcome in some other manner.

Hi Jonathan, If you're happy posting on the boards is there any reason for you to leave? Please stay and continue to post, we'll miss you if you go.

The term pupil referral unit can be used to cover a wide range of different scenarios. In my LEA there are two types of PRUs. There are a number of PRUs which are for pupils with EBD who have been or are at risk of exclusion and there is a PRU which is exclusively for children who are sick or school phobic, the aim is reintegration and only a limited curriculum is offered. I personally feel that both are unsuitable for children with ASDs because they don't relate to the specific problems encounteed in autism and neither have staff with the specialised training and understanding required to deal with the difficulties encountered. Our LEA wanted A to attend the PRU for sick children. Even without the sensory difficulties that he would encounter, I felt that it would be unsuitable both because of the limited curriculum and because A needs continuity of people around him not things that are constantly changing. More generally, I don't think it is possible to say that PRUs are the worst possible place for children with ASDs. I think that you have to look at each case on its merits, looking at both the specific needs of the child and the specific set-up and ethos of the PRU in question.

Do you think this is related to visual perception as well as tone of voice? A also has a thing about calling people evil if they tell him off or disagree with him. Always has done and it's no better now that he's a teenager. I remember when he was at Infant school he would insist that his teacher was evil and no amount of talking to him would convince him otherwise. This teacher was loved by all the other children. Many years on, he still often tells me that he has nightmares about her and that she was truly evil, it was in her eye (never eyes, always eye) everytime she told him off and her whole face would distort. I am convinced that for our child sound, emotion and vision are often interlinked, their perception is just different. A tells me that people's faces will often blur, distort or disappear, it's all part and parcel of his prosopagnosia, but he insists that their attitude, character and intentions affect the way in which this happens. I don't profess to understand it all, but now A is feeling able to explain things to me, I'm beginning to see that these situations are often more complex than we originally think.

Hi, A has great difficulty at night for all the reasons that you list. Whilst melatonin no longer helps him to sleep, it does help to calm his anxieties. Having realised that he is not going to sleep, whatever we do, we also allow him to play his games on the internet or his games consolesand this also helps because his attention is focused on something other than the noises. We don't have to worry about unsuitable sites because A vets these for himself and now only visits those he's comfortable with. We still have problems, but before we took this stance nobody slept at all at night in our house, now my husband and I do get a small amount of sleep and A is far less fraught. We no longer have to change A's bed a couple of times a night because of sweat caused by anxiety and his mind doesn't race with thoughts of inadequacies or how he could have handled situations better because he's focused on something more pleasant.

A is having some difficulty with his English GCSE. The problem is that he cannot see that a picture can be viewed from any other viewpoint other than his, so a photograph of Beckham celebrating a goal that he has scored with Roy Keane is just that. He cannot see that because no goal or ball is shown that there might be an alternative storyline. In an attempt to get him to understand I want to show him some of those pictures that will be viewed differently by different people. For example there is the famouse one of the woman, some people see a beautiful young woman, others see an old hag. Problem is I can't find any and I don't know the proper name to google for. (Edited to say just found the old woman/young woman one and one of a duck/rabbit but any others would be helpful). Any other ideas on how to get him to see that there can be many different interpretations of a static picture, particularly if he already knows the full story attached but isn't supposed to? Can anyone help?

Do you have a child with ASD who is passive or pretends to cope? A has always been a passive child who tries hard to fit in and behave in the way that is expected of him. When he first started school, he struggled to understand the complex rules and was always in trouble. He didn't like this, he hates to be the focus of attention so he quickly learnt to internalise his problems and became extremely introverted. As a parent, I can recall thinking that it was as though somebody had attached a vacuum cleaner to him and sucked all the personality and vitality out. Of course, the school loved this. He became the ideal pupil. He was intelligent, was quietly invisible and had a mum who quietly sorted all his problems out at home and who even taught him what the school were failing to teach. He didn't really explode at home either. He would just lodge himself in his obsessions but he was extremely anxious, had moments of extreme hysteria, times when he'd refuse to go to school and never slept. We were also aware that he was being bullied and that he was having problems with his sequencing his work and maintaining friendships. How do you get your child's difficulties recognised by professionals? I stopped trying to sort all his problems out quietly myself and sent weekly emails to the Deputy Head detailing all his problems and either suggesting resolutions or asking for intervention. Instead of telling A that he had to put up with the actions of other pupils, I reported every incident. I followed up on every email and made sure that my concerns were being taken on board. Everything that was a concern to A was reported in writing, no matter how small. Have to say that I didn't get round to doing this until he sustained a broken wrist due to bullying at school, this was some 8 years after I should have started and it was the Educational Welfare Officer who told me to get a dx and write to the school on weekly basis to get him support. I had spent 8 years verbally trying to convince his schools he needed help without success. The dx was easy once I got the GP to refer him, but that required a letter from the EWO saying that he was at risk in the school environment and that she thought he had an ASD. I had spent years telling the GP there was a problem, but he merely shrugged his shoulders and said that we were coping so didn't need a referral. Do you think the child who is trying to be invisible wants attention or would rather stay invisible? I can only answer for A but he wants to stay invisible. Initially, he hated me for bringing his problems to the school's attention but as my persistence started to ease the pressure on him, he started to see the merit in bringing his difficulties into the open. Fortunately, the Deputy Head realised that A wanted to fade into the background and was as discrete as possible. Should the LEA put provision in place for a child who is coping or appearing to cope at school? If the child is only pretending to cope, provision should be put in place. I started sorting things out too late for A and he eventually had a break down and started self-harming. All experts and the LEA are agreed that had he had support from Infant school it is unlikely that his anxieties would have got this bad. When I started emailing details of all his difficulties to the school the Deputy Head took the time to get to know A. I sat at meeting with the LEA a few months back and heard him admit that he was shocked to discover that as he sat at the back of classes watching this child, who everyone considered to be an ideal pupil with no behavioural problems, it became obvious to him that this in fact was a child who had very severe difficulties that no-one had noticed. Once he was allocated some one to one support it was obvious to the one to one helper that A could not cope at all in a mainstream environment but had effectively conned everyone into thinking he could. How do you convince the LEA that the child is only pretending to cope? By documenting all the problems no matter how small and enlisting medical support. Also try to find an ally within your child's school who will help you fight for their needs. For us it was the Deputy Head, but it could be a SENCO, HOY or a teacher. Look around until you find someone in the school who will help you, don't assume the first person you try or the person who should be helping is the one. Be persistent. If plan A doesn't work, have a plan B and plan C ready.

A's Consultant wrote a letter to the school SENCO who suggested to her that A had no real problems because he had a dx of AS which in the SENCO's words means he's mildly odd with no real difficulties that couldn't be overcome by trying harder to get on with people. The Consultant told her that whether a child with autism was high or low functioning bore little relationship to the severity of their condition and that in her opinion A was severely affected by his autism and was unable to live a normal life because of it, which meant that he was severely autistic despite his normal appearance and high intellect.

<'> <'> <'> Hope your son recovers quickly and is able to come home soon.

I have to say that my family treat me and A exactly as they always have and are brilliant. Having said this, I can see that A's autism came from my side of the family and that me and one of my brothers and one of my sisters clearly display traits, and that my father and grandfather when alive were clearly autistic, so they just accept A as he is and understand what is happening and so know how to deal with him. However, since we live over 100 miles away from them it really doesn't help very much. My husband's family and his friends are very different. I often find myself very hurt by their comments and lack of understanding and I have to be honest and say that we have both distanced ourselves from them as they have revealed a total ignorance and lack of compassion and empathy. I could understand if their comments were based on A's behaviour or what they know of him, but they base their attacks on their incorrect understanding of what autism is and not the reality of what is facing them. Got to say that I'm not bothered that we are on our own, but I do feel sorry for my husband who is really far more social than I am.

Well done Auriel. Taking 4 A levels is quite an achievement, the specialist AS school has obviously been exactly what Auriel needed. I'm glad it's all sorted and that everything is working out for you all. One of A's current obsessions is Tim Burton. He did a multimedia presentation on Nightmare before Christmas for part of his ICT GNVQ work.

The schools actually work to the regulations laid down by the Joint Council for Qualifications for all public examinations. You can access the regulation document HERE This document is my bible at the moment. Every time that A's home school says something can't be done, I use it to tell them why it can. It's a lot of reading, but I would suggest that anyone with children coming up to GCSEs or A levels read it and familiarise themselves, particularly watch for deadlines for applications and whether it is advisable to ask for dispensation at the start of the course.

I asked a similar question some time ago HERE is the link to the thread and responses I received.

Curra it's a great article isn't it? Clearly shows that the child isn't deliberately avoiding difficult situations. I've used this one in the past to help the school understand the problems that A is having. Just read it again and think I'll print it for A's home tutor who seems to think his shutdowns are due to lack of sleep - hopefully it will help her understand the real reasons. Then again, it probably won't but can but try.

It stands for Time And Relative Dimension In Space I'm not looking again. Supposed to be teachimg A maths!!!!

defencelessness ? Is that a word?

I would have believed in myself more and not allowed so called experts convince me that I was wrong. My biggest mistakes have been when I haven't trusted my instincts and so have procrastinated too long.

Hi PSA They are trying to find out if there is any unidentified medical problems which are causing the educational difficulties and for which they need to make provision. The doctor also makes a note of current dxs and says what the medical implications are of this. So normally you are asked about recent eye and hearing tests and offered these if appropriate, listening to the heart and chest, looking in mouth and ears and just generally speaking to you and getting a medical history and listening to your concerns. We were lucky, A's Consultant was also the school Doctor who did the medical. She explained to him at one of his appointments with her what would happen at the medical and told him he could refuse to let her examine him, which he did. She just noted that he would agree only to a very limited examination, which was entirely consistent with his dx and wrote a separate report in her capacity as his Consultant with relevant info. Your son's Consultant should have been invited to do this any way as part of the assessment process. EDITED to say - just seen your update. Good news, that's the best way forward.

Hi Curra, I agree with the others that you should speak to your son's Consultant because there is a possibility of tourettes and/or epilepsy. However, just to give a slightly different perspective. A develops both motor and vocal tics when he is tired or stressed. He also has complete shutdown periods when he is completely unable to respond, very similar to petit mal fits, these are recognised in autism and if you google for autistic shutdowns you will find information on them. A's Consultant did test to rule out epilepsy and other neurological problems likely to cause tics and fits but all came back clear. Her solution was then to sign A off school sick, since this was the source of the stress and the tics have disappeared and the shutdowns are less frequent but still apparent since they were due to sensory problems. Hope you get something sorted soon. Going back to school to stop you getting into trouble will just increase the stress for your son, hope his Consultant can sort something out.

I think you will always be welcome to post here and hopefully in future get the support, friendship and advice that you deserve. I'm sorry that things have been so difficult for you. I really hope that things improve soon. Keep posting, all are welcome here.

There's the Tony Attwood article on the passive child at school, it's in his book but Nellie always used to be able to find the link to its transcript on this site, so maybe try a search. There's also this article that Nellie posted a little while ago:- Shaz I have found this for you. Taken from: Meeting the Needs of Children with Autistic Spectrum Disorders By Rita Jordan and Glenys Jones When life at school and home is going well for the pupil, and parents and staff are receiving positive reports from each other, it is likely that parent-staff relationships will be easy to develop and maintain. However, both staff and parents need to prepare for times when the child's behaviour or performance might be viewed as a problem either at home or at school. Staff-parent relationships might then be more difficult. It is possible, for example, for each to blame the other for something they are doing or not doing with the pupil. It is important in these instances to gather information on the nature of the problem and on the factors which might be contributing to this at home and school. It can be easy to take the quick route and guess what the cause might be, without making adequate enquiries and getting clear, factual information from all involved. Engaging in speculation is not helpful and is likely to lead to the apportioning of blame and ineffective solutions. This is particularly true when the child's behaviour appears to be very different at home from his or her behaviour at school. Pupils may pose no major behaviour problems to staff and be very undemanding and well behaved in school. When they arrive home, however, they may engage in challenging behaviour towards their brothers, sisters or their parents. It seems as if the pupil manages to contain all the anxieties and difficulties experienced at school and releases these on returning home. For some children, the reverse scenario is true, particularly when the child first starts attending school. The child may be relatively easy to manage at home, perhaps because the environment is faily constant and familiar and there are few demands to be sociable or to engage in tasks which are not interesting to them. In school, they find themselves in what is to them a noisy, confusing, social environment where people attempt to communicate with them in ways which they often do not understand. In additon, they are encouraged to engage in tasks which may hold little interest or meaning for them. Their reaction is to try to sabotage the activity or to escape or to do nothing, all of which challenge the teaching staff. When parents and staff hear very different accounts about the same child, they may find it hard to believe or they can be quick to blame the other. It is important to acknowledge that very diffferent behaviour at home and school is a phenomenon found in some children with ASD (as it can be in others). Further infomation on this subject. ' Be aware of two characters' is on page 39 of Tony Attood's book - A guide for Parents and Professionals. Be aware of two characters The child may be very conscious of the necessity to follow the codes of conduct in the classroom and to try to be inconspicious and behave lid the other children. This pressure to conform and retain self control can lead to enormous emotional tension, which, like a compressed spring, is released when the child reaches home. Here the child is a different character, almost a Jekyll and Hyde. This is a feature of some children with Asperger syndrome and not necessarily an indication of the parents being unable to manage their child. It will help for the classroom teacher to have a range of relaxing or solitary activities for the child just before they return home. Parents may also consider a period of relaxation or energetic activities when the child comes home to dissolve their tension from a long day at school.