tom'smom

Thanks for your suggestions. The SEN dept at school have asked for LEA assessment for both but have been refused. Eventually They agreed to take my son onto the casebook as he has a diagnosis but they won't consider taking my daughter. I may try for second opinion at GPs, the problem is they have such high staff turnover that we have no one who has really got any idea what her history has been; until now we never really considered AS to be the problem and she's not sick often so her medical records don't show anything useful. Current GP has written to CAMHS, as have school, but CAMHS say they are not commissioned to provide services for ASD so referred us back to the clinical commissioning manager. GP and school wrote to her too but there has been no reply after several months and a follow up request from GP. The GP group Practice routinely turns down all but emergency referrals out of county so that is out of the individual doctor's hands. From talking to SEN staff and head of pastoral care at the school it seems they are aware of this diagnosis/care gap for autism/Aspergers teens locally and it is causing them as much of a headache as it is me. Even the local NAS staff are telling me private is the only option, or move to Essex.

Hi Bluebottle, I am experiencing exactly the problems you mention. We live in Felixstowe. I have a 12 yr old son with HFA who has received a little, time-limited help since diagnosis at age 8, though this has now ceased as far as the NHS is concerned as they have signed him off; when problems arise we now rely on suggestions from Autism Suffolk - this also will cease when he turns 14. We have finally managed to get the Ed Psych to accept him on the caseload but she warns that she will not work with him but with his teachers, so no direct assistance here either. However this is what we have come to expect and we struggle on; thankfully he is at a good school where teachers are made aware of his problems. A much bigger problem exists for my 14 yr old daughter, who we and her teachers (same school) suspect has Aspergers. She has been the subject of a CAF process following repeated social problems at school and their inability to deal with her exceptional IQ (she joined Mensa at age 12) and her GP has requested referral to suffolk CAMHS, supported by school, which was refused on the grounds that Suffolk CAMHS has "no mandate to deal with cases of ASD". They referred back to Child and Family services, who refuse to accept anyone for potential diagnosis past the age of 11 (indeed they signed off my diagnosed son when he hit 11, just before a major upheaval in his life - transitioning to high school.) The GP will not refer out of county as it means a major hit on the group surgery budget. The National centres for ASD/HFA will only accept a CAMHS referral so that is no option. We are willing to pay for a private assessment although we expect the LEA to refuse to accept it, even tho they are not presenting any alternative. So yes I think we have been severely let down by the NHS in Suffolk and I am happy for you to use this case to forward your own. If you could contact me directly to discuss potential assessment costs etc i would be very interested -assuming you could do so without requiring a CAMHS referral of course.

Hi Jade, I'm no expert but I am mum to Tom (10) who was diagnosed with High Functioning Autism 2 years ago and I can sympathise with your family's problem. Unfortunately until you do have a formal diagnosis many schools will be reluctant to give you any extra help, even though they are supposed to; they think they can bamboozle you into thinking you have to have a Statement of SPecial Educational Needs, which actually you don't (although it can help). And although there is a lot of help out there, finding it can be a nightmare. What I can suggest is this (I don't know where you live so can't be more specific): 1. Use the NAS website (www.autism.org.uk) to find out more information about the condition and also to find your local NAS support group. They will be the best source of help to you because they will know the local schools, local groups that are available to help your brother etc. They will happily talk to you without you having a formal diagnosis. Most local groups have family advisers who will come out and talk to you, and also a huge amount of resources, books etc that you can use. 2. Get hold of your local education authority (county council education department) and ask them to give you the number for Parent Partnership in your area. These are trained semi-voluntary people who work on a family's behalf to ensure the school is doing all it can to support the person with difficulties. You do not need any form of diagnosis to access this service, its free, and it is a great help when it comes to dealing with schools. They can come with you to school meetings etc and help with paperwork. I've found the school has completely changed its attitude since PP came along with me, they no longer treat me like a paranoid mother! 3. If there is a local NAS group, go along to it and chat to other parents, siblings etc. You will get invaluable local insight here, as they will all have been through the same thing, although obviously autism being a spectrum disorder their children/siblings may well be very different to Kai. You don't have to go every week or commit to doing anything to help, but it is often a first step to feeling that you are not alone and are supported. Many areas also have activities organised for young people with autism or similar conditions; these parents will probably know what's available. THey are also a great help when it comes to filling in forms etc, of which there will be many! 4. Go to your local library and ask them to help you locate any books that explain autism and ask them if they know of any local groups - libraries often have lists of groups and activities that go on in their district. You may find that many of the books are very scientific and hard to read; just chuck these and keep going, there are lots of really helpful books out there. Tony Attwood's are the best, and one I've found especially useful is How to Help Your Autistic Spectrum Child: Practical Ways to Make Family Life Run More Smoothly by Jackie Brealy. Disregard anything American or anything that promises a special diet can cure autism. It can't. 5. If and when you do get a diagnosis, register your whole family with the Autism Research Centre (http://www.autismresearchcentre.com/) as by doing so you can help scientists discover more about autism, how it develops and potentially how to treat it. 6. See if there is a Family Carers or Young Carers organisation locally. If your brother is diagnosed with autism, or similar condition, they can provide help and support for you and your family. In our area, for example, my daughter who is 12 registered with Young Carers because she often has to help look after her brother and their relationship can be quite fractious so she needs some extra support. They have been into see her in school and arranged counselling if she needs it, plus they arrange days out, have a monthly club where other young carers can meet up etc. This is not autism-specific, many of the young carers have family members with cancer or mental health issues etc, but they are all quite supportive of each other and understanding of frustrations etc. I hope this helps somewhat; good luck with the diagnosis. Helen

Hi Diane, I know how you feel, my son (10) is the same with school, complains like mad about it, stresses and hates everything about it, refuses to get dressed or do homework etc, but tells teachers all is fine and he has no problems. I hate that! It makes me look like a paranoid parent when I have just written to the school saying how stressed out he is! He also screams that he hates me and I ruin everything several times a day, and throws or kicks things. When he's calmed down I speak to him about it, he apologises and can be very sweet until the next time I tell him something he doesn't like (i.e. time to switch off the computer) and then immediately does the same thing again. It can be very wearing and demoralising, people tell you to ignore it or they don't mean it they're just blowing off steam, but it still hurts and after a while you start believing it. I've tried applying logical consequences/punishments but it doesn't stop it happening the next time, he just can't seem to stop himself before the words have left his mouth or the object has left his hand. My younger son started copying a lot of Tom's behaviour but the consequent punishments do seem to work better with him so this has become less of a problem. I don't have any easy answers I'm afraid, but one thing you said struck a chord, that his Dad has gone to the UK for a week. My husband works away from home and I have found Tom's behaviour worsens when Dad's late/staying away. As soon as Dad comes in, great excitement, then all is sweetness and light (until told it's bedtime). Recently we had a breakthrough. Tom told his psychologist that he is very scared of dying because he saw a bad train crash on Newsround. This didn't initially make sense as he only goes on a train about twice a year and he quite enjoys it. However my husband commutes by train. The psychologist thinks that Tom can't say it is Dad's train he's worried about, because that might make the bad thing happen (ie Dad's train to crash). Tom doesn't understand the probability of a train crashing is very small so he blows it out of proportion and whenever Dad is late, he thinks the train must have crashed and he's dead. So (sorry this is a bit longwinded) my point is that if your son is similarly 'wired' it may be that he is worried cos his Dad is away and doesn't know when he will come back, but doesn't want to say that, so the anxiety comes out in bad behaviour. The psych suggested letting Tom text his Dad when he's worried to see where he is. Can your son communicate with Dad when he's away? It might help. I know how exhausting and frustrating all this can be so feel free to PM me any time. I may not be able to help but I'm always happy to listen! Helen

Hi Mariana, Are you only interested in adult participants? If you are able to take children I can promote your study via our local NAS group in Suffolk which supports children from 1-12 with ASDs; as it's quite local you may get more interest. Good luck with your research. Helen

I have been asked by Leanne Swain and Ed Sucksmith of the Autism Research Centre to publicise this research project. Thomas and I took part earlier this year and it was very interesting. Now they need at least another 20 families, preferably with 2 or more children with a diagnosed ASD. Brief details follow; if you think you may be interested please contact Ed at es504@medschl.cam.ac.uk or Leanne at ls574@medschl.cam.ac.uk and they will send more information. They will cover expenses and are quite flexible on where you can meet with them. Please do help with this project which will help further understanding of family links in autism. Personality characteristics and cognitive abilities in children with an autism spectrum diagnosis and their parents You are being invited to take part in a study at the Autism Research Centre of the University of Cambridge and the Open University in Milton Keynes. Please consider taking part in this new research project. What is the purpose of the research project? The aim of the research is to examine to what extent children with autism resemble their biological parents on a series of tasks. This study may give us important insights in which characteristics are shared between parents and children and which features are not. Who can take part in the study? We are currently seeking the participation of very special families, who have two or more children with an autism spectrum diagnosis. The participation of such families is of extreme value to our research study, as it will help us to better understand the similarities and differences between parents and their children with autism. Please note that only one of your children will need to take part in the activities and tasks, in addition to both of you as parents. What will happen? The study will involve the completion of some questionnaires and assessments on a couple of mental tasks. Prior to the testing day, we will ask you (as parents) to complete some personality questionnaires. Depending on what you prefer, the testing day can either take place at your home, or you can visit our testing rooms in Cambridge or Milton Keynes. The testing session will take about 3 to 4 hours in total and you can take breaks during the session as you need to. We will start with a detailed interview that asks about your child’s social and communication skills. You will then be given a brief IQ test, and we will ask you to complete three mental tasks. One task involves solving puzzles and two tasks concern the recognition of emotions in other people’s faces. Before you do each task, full instructions will be provided and you will also get the chance to practice. Whilst you are completing the tests, we will also ask your child to do an IQ test and to complete the same tasks. Lastly, we will assess the strengths and difficulties of your child during a standardised assessment.

Yes it works, I did it and got to the end. Hope the research proves useful, I'd like to see the results when it's complete. For anyone out there who doesn't already know, if you are interested in helping with research into ASD you can also register with the Autism Research Centre (ARC) and complete various questionnaires and tests to help further understanding of ASD. You may even, like my son, get invited to Cambridge to take part in research projects. He absolutely loved it. Website link is http://www.autismresearchcentre.com/arc/default.asp Helen

Hi, I got refused first time too, within a couple of days of them acknowledging receiving the form (though a good 3 weeks after I'd sent it). I too was gobsmacked cos I had provided 16 pages of additional information, reports, copy of diagnosis etc. Local NAS said to ring them and ask for more information as to why they refused, and then ask for a reconsideration. They also said everyone seems to be getting refused first time for autistic disorders unless lacking in speech and bodily function control. I spoke to the DWP office on the phone and they were actually really helpful (tho it does depend who you get), they told me it was because of a report they had had from the school. I asked for a copy and then rebutted each point the school had made - basically they were denying he had a problem at all because the head doesn't want to be made to provide any resource for him (i.e. if she agreed he had needs, she'd have to provide solutions). She had even said on the form that he had no problems with road safety - she's never been out of the school with him so how would she know!!! When I wrote back to the DWP I asked them specifically to contact his consultant and addressed each of the points in the school's report individually in a separate letter. They contacted the consultant paed within 3 days and eventually wrote back saying I could have mobility allowance but not personal care. From talking to NAS this is an unusual combination and I could appeal, but to be honest I haven't yet cos I have too much on at the moment. I decided to wait until we have more reports from Ed Psych, OT etc to bolster my case for personal care: it seems you can reapply at any time tho you have to fill the whole form in again Anyway this is a long-winded way of saying ring them and ask them to reconsider. Ask for all the reasons why they refused your claim, they should put this in writing, and then address each one. Either ask your consultants etc to supply letters you can send in, or ask DWP specifically to request reports from them. If you want a report from the school, tell them specifically who to address it to (maybe class teacher, SENCO?) and write to the school telling them you have done this. I think DWP give you a month to get as much info in as you can, from the day you request a reconsideration. Then they take up to 6 weeks to decide. It seems from talking to other people that you may then get some, but probably not all, you think you should get; at that point you have the option of taking it further to appeal, but then may lose what they have given you as well, or getting more. It seems a bit of a lottery to be honest. HTH Helen

No! And his isn't even long enough to tie back, just below collar length thanks to my late-night snipping. Maybe I should send him in tomorrow in the clingfilm? With a box over the head to keep the other kids at a distance? Unclean! Unclean!! I must admit, considering how he dislikes anyone getting close to him and rarely plays with anyone at school it is a mystery to me how he picks them up so often, especially as I've drummed it into him not to touch heads with anyone. He does do circuit exercises each morning at school on mats with a group of other kids so maybe the lice are getting onto the mats? Helen

Thanks Justine, I do treat all the family (except hubby who is almost bald -- nowhere for them to hide ). I have given up on washing/dry cleaning pillows and duvets, each time he (or one of the others) gets them I just buy cheap new ones and wash all the bed linen on hottest possible wash - and towels. Thankfully we have leather furniture and wooden floors so that's one less expense Its the friends he's getting them from: some of the parents freely admit to have stopped bothering even with wetcombing as lice are so endemic in the school. I spoke to two of them since getting the phonecall and neither of them has had a call, even though they admit their kids currently have lice. I think it's a bit unfair we're being blamed just because Tom's hair is long and often messy. What I really need is info and tips from anyone whose child has major sensory issues with their hair who has had to convince them into being treated and convince the school that it's not as easy as 'get his hair cut short', which is what they are suggesting. Meanwhile I've conditioned and clingfilmed us all and told them not to answer the door Helen

I've just had a phone call from Tom's school complaining that he has head lice and needs to deal with them. Uh...I know he has, I told the school 3 days ago that I'd found them in his hair and treated him AGAIN - about the fifth time this school year. Today they have finally got around to sending out a nit letter, and now they're blaming him! It's a nightmare cos he has sensory issues with his hair: he hates having his hair touched, normal combing is a huge battle each day and he point-blank refuses to have it cut (it's now shoulder length and would be longer if I didn't occasionally trim it a little while he's asleep). He will lock himself in the toilet for hours if I so much as mention the nit comb. I have had to bribe him with rewards and do a little at a time over several hours (which probably defeats the object as they probably scurry from one side to the other ). It leaves both of us exhausted. I've explained that having shorter hair would help, but that freaks him out even more. I've tried chemicals, conditioner, tea tree, oil. Numerous combs. He's got tons of hair and its very fine, so the eggs just slide under the comb and have to be picked out Finally I get him clear, manage to hold him down long enough to comb him again 3 days later, clear, then within a week he's picked up more. He gets so distressed at the thought of combing (he doesn't mind the lice, calls them his 'pets' ) it is horrible. And obviously others in the class aren't treating or he wouldn't pick them up again. Should I persist or tell the school to go bother someone else? Helen

Wow, thanks Sally there is loads of info there. It's good to know that other kids seem 'normal' at school and different at home, I really was starting to believe I was the problem i.e. not doing a good job at parenting. My elder two are at an excellent Catholic high school that has really good pastoral care and SEN provision, so we are hoping to send him there unless it seems he will need more specialist AS schooling. I've a friend whose son is AS and he's well supported there and is much happier than he was at my son's primary. I think any high school is going to be a huge issue, with all the changing from room to room and squashing in the corridors. Let alone the biology practicals! Hopefully this meeting on 15 Feb will clarify what's happening with assessment etc, and I can discuss possible statementing with the various people that are there. Helen

Oh well done, first hurdle over! Don't get too fretty about it just go along and see how it goes. It's worth a try. Plan a treat for afterwards so you've got something to look forward to (I find the promise of a hot chocolate and a big slice of cake makes anything better ) Good luck Helen

I'm hoping to raise this with the AST team at the meeting, he certainly has elements of both. I had initially suggested it might be dyspraxia but they seem to have gone off that tack since diagnosing ASD, maybe because OT didn't think he had a problem. Your comments re handwriting sound so familiar, the teachers used to do the felt tip thing with Tom too but stopped when he left the infants. I persisted for a while but there was little improvement. Now the teachers are saying it doesn't matter as long as its legible but that attitude does seem to vary from one teacher to another so next year he could get one who nags him about it again. Hey ho. Helen

My thoughts exactly! She's also extremely patronising which totally winds me up I have been trying to get this across to the teachers, they just don't seem to get it (or care). I am keeping notes on behaviour and triggers so hopefully they'll look at that. Not sure whether its School Action or not, it doesn't say on his IEP although someone told me recently it should do?? I will query this with the school. It all did! Thanks Helen