Sally44

My son also has an Anxiety Disorder and OCD. He was out of school for primary year 5. He is now at an independent ASD specific secondary school. It took them 9 months to get him in again. Recently he has refused school again. The way, we have found, is to reduce things to a level where he does feel able to go into school, even if it is for just an hour. You say he's already had a reduced timetable? My son is just doing english, maths, science and SALT and OT therapy. Try to meet each and every cause of anxiety. For example, my son struggles to recognise people from their face or remember their name. So each situation, with an adult is NEW to him even if he has worked with that adult for years. So what we have done is arrange for ALL the adults in his class and therapy team to wear a yellow star, so that he knows they are part of his team. That has helped. He also stays in class with an adult for break, and goes over and collects his lunch and brings it back to class for dinner. And he goes to adult supervised dinner time clubs. He has lots of breaks throughout the day. He watches a DVD every day. He gets lots of 1:1 from staff. He still refuses school sometimes. And I am currently driving him in. He goes to school for 11.00am. We too thought of full time boarding as we thought that it would remove the anxiety around transitions, getting into the taxi etc. But he loves his home, and due to OCD he finds it hard to be in different environments as his fears are about contamination and also intrusive thoughts. He became fearful that we were going to make him live in school. He said he did not want to board in school. So boarding would not work, although we have been offered full time residential. Currently he sleeps over for one night a week. We did get it up to 3 nights, but then he refused school again. We would like to increase his residential stays slowly as he gets older. But it would be torture for him to be kept in school in the very environment that triggers alot of his OCD. Friends really did not understand and said that I should just do it. But Anxiety/OCD is a mental health disorder. Making him board when he did not want to would be like having him certified. It would take control away from him again. It would break his trust with us as his parents. It is VERY important that trust is built so that your son knows that he will not be encouraged or made to endure more than he can. We have also taught him a hand signal to use that staff know means he has had enough and they need to stop, or remove him from the environment, or distract him etc. The sign means his anxiety has taken hold again. And by giving our son control, that does reduce his anxiety. Because for him it is all the "What if" scenarios that make him anxious, and some of those fears are very mundane such as "what if someone speaks to me. What will they say. What will be expected of me. What will I need to do/say." This was an area we never even thought was causing him anxiety. We too tried medication, up to 200mg sertraline/day. But we found it made him like a zombie with a flat depressed mood, and did not help with the anxiety at all. So we've slowly taken him off that. Sometimes all you do is the best you can, and it just takes time. Anxiety is a horrible thing. Your son needs to slowly learn to manage his anxiety by 'feeling anxious' and just accepting that and being quiet, and using any other techniques to help, until he calms down again and sees that nothing bad happened. Could his anxiety be OCD based?

If the GP is calling you in for a routine appointment, then it is probably not related to the psychiatrist at all. Definately go and see what it is about. Regarding the property you have inherited. I would advise that you see an accountancy firm that can give you advice on how best to use that property for income and what tax you might become eligible for. You need the advice from them, and then from an independent organisation about what support or benefits you are entitled to. Because some benefits and support are means tested. Which means that depending on how that capital [bricks and mortar or money] is invested, will affect whether you have to pay for certain things or not. But if you have a 'disability' you should be entitled to DLA, or the scheme that is replacing DLA, and could use that money to employ someone to help you manage your daily life. Regarding your finances, especially your inheritance, I would not leave that in anyone elses hands other than a company such as and Accountancy firm, if you are happy with what they propose you do with your inheritance. There are ways of doing things that will significantly reduce your costs. For example I borrowed some money from my sister, who has a disability. She works, but she also gets a means tested benefit. If I repaid her back monthly, she would lose that benefit money as that would be viewed as 'income' by them. But if I give her a payment once a year it is also viewed as income, but just a one off payment. So she can invest that money in an ISA, for example, and not lose money on any benefits. So I would advise you to write down all the questions you have about your daily living situation, inheritance situation, benefits situation etc so that you can go through them with the person from the CAB. Also ask them to put their advice in writing so you don't have to try to remember it all. Then, if you go and make an appointment with an Accoutancy Firm [or any other professional such as a solicitor etc], ask them to quote for the advice they will give you and quote, in writing, for the work they would carry out for you. And a quote should be stuck to. You should not be charged above the quote unless there is a significant change in what you are asking them to do for you, and your permission for that increase should be sought and agreed.

I have always found this organisation very helpful http://disabilityrightsuk.org/ Make sure the request for an assessment of your brother is put in writing. Disability Rights UK helped me to word a letter correctly so that my son was finally assessed by Childrens Services. Once you have a letter, with a date, you can lodge a complaint if they don't assess. And you can involve the Local Governments Ombudsman who will ensure that adult services did go through the correct procedures. And it sounds like currently they aren't doing anything. The LGO can order the LA [adult services] to do what they should do, and can award compensation. If he has a diagnosis he is a vulnerable adult. Include in the letter exactly what is happening ie. eviction, unable to cook, clean, shop for himself? Mental Health Assessment needed etc. I presume he is not working? If he was fostered, then childrens services must have been involved. Can you contact anyone involved previously to get advice on who to contact now? The Charity Mind may also have some advice.

I definately think your son needs assessing for a sensory processing disorder. He shows so many signs, including the rocking and covering his ears to noise. Once you get the concept that your child maybe experiencing things differently to you, then you are on the path of discovery. With my son he was really surprised when I told him that other people do not see, hear, smell, taste, experience tough as he does. He obviously assumed everyone was the same, but for some reason other kids could do the things he could not. That made him label himself as stupid, weird, a loser etc, which does nothing for self esteem. I believe that with most, if not all, autistic "behaviour", there is a reason for it. Here is a link to a woman called Amanda Baggs. This video is very powerful as your perception of her ability to function is greatly reduced in the first half of the video, and then she uses the computer to speak [as she is totally non-verbal], and you realise how intelligent she is. Makes you think about how we judge the functioning ability of individuals.

I know it is hard to know or understand the 'cause' of many things our children with or without autism do. And we don't always get it right. But the fact that we try, means we are able to make adjustments if we need to. I absolutely agree that there must be rules. But I think that we can get a 'gut' feeling about whether our child is being naughty or disobedient or not. My son is now 13, and I still don't always get it right. He really struggles to go to school because of the autism, because he also has severe dyslexia, because he also has OCD, because he also has dyspraxia, and because he also has sensory processing disorder. So on so many levels, going to school is sometimes something he just cannot do. And that is hard to take. Especially when many people are saying he just has to go QED. It isn't that simple. I can see myself that he cannot do it. And when we make adjustments at home and in school he does agree to go in. And he has been given alot of control over when he goes on, and how long he stays. And some people who do not know him or the situation might say he is being given too much control. But when he has control he starts to slowly go back into school. He does want to be there. Currently his OCD is quite bad. And his anxiety is high. That causes his sensory issues to increase. What I love about this forum is that people can come on and ask questions and get answers. Sometimes those answers are very different. But they have worked for those people, usually with their own children. I hope that the information posted by others is useful to you. I found that as my son grew up, he became more able to talk to me and explain what his experiences are - just like dotmarsdot.com has done. For example my son told me how anxious he gets going into school just thinking about what people might say to him. He finds that really hard to deal with. He is verbal, but he has a severe/profound speech and language disorder. The thought of what people will say, what will I have to answer, what will be expected of me, will I be understood, will I be believed, will people laugh at me, will I be able to find the words, what if I don't understand - the list goes on and on. And we just don't have those issues. We just take so much for granted that is so hard for our children. I would love to be able to experience what my son does. I do have some sensory issues myself so I think I do have some insight. I specifically have tactile sensitivity. And I remember as a child my mum used to make clothes for all of us. And I remember a number of those dresses, and how I refused to wear them. On one occasion I missed a party because I would not put it on. My mum thought I was being awkward and so said I would miss the party. But I could not wear that dress. It caused my physical pain. It was a synthetic fabric and synthetic lace. I felt like my skin was on fire. Labels and tags in clothes cause me physical pain, like a needle being stuck into my skin. I HAVE to cut them out. I cannot wear certain fabrics, and sometimes just touching me hurts - and the hurt sensation can stay, sometimes for minutes at a time. I have problems with socks, shoes, seams. I don't comb my hair EVER. But obviously what I did not know as a child was that my perception and sensory processing was DIFFERENT to other people. I also have auditory processing disorder. In a crowded room, or with some types of background noise, I cannot hear what is being said. If the TV is on and I answer the phone I cannot hear the person on the phone. I often appear deaf and my family members have to touch me to help be 'zone in' to what is being said. In a crowded room my ears pick up different words from different conversations, so I get a mish mash of sound and words, but none of it makes sense. Sensory Processing Disorder is complex. I think your son should be assessed by an occupational therapist. You will find it hard to get via the NHS, but not impossible. If you can afford it it might be worth getting an independent assessment. Some independent ASD specific schools have OT and SALT employed on site. And the OT should be qualified to deliver a sensory integration programme that really does make a different to the child.

Yes children with or without autism need rules. The only thing I would add is that this rocking and rolling could be a sensory thing. If it is sensory seeking then he maybe less able to 'control' it. Simply because he 'needs' to do it. And the reasons for that need could be many. In the same way that we need to open our eyes to see. It could as basic a need as that, to self calm, to get feedback from his core muscles/bones. He may need to rock and roll in order to get to sleep and that is why he is falling asleep on the mattress on the floor - because the rocking and rolling calms him to enable him to sleep. Has he ever been assessed by an occupational therapist for Sensory Processing Disorder? Does he often seek movement, or like to be squashed etc? My son has alot of OT input in school. I also have things at home that he can use to get the sensory input he needs ie. punching bag, trampette, peanut ball to sit and bounce on in his bedroom. He uses them. And he needs to use them. It helps him control his anxiety, it helps him get the sensory input he needs. Previously he has broken his bed. He has also chipped off large areas of plaster on his bedroom wall because he was hitting the wall with things to get the 'sensory feedback' from hitting a solid object such as a wall. Obviously that is unacceptable. But you can find out ways that he can carry out the things he 'needs' to do. There is a difference. If it is just being naughty, then he would not use something 'appropriate' that you gave him to get the same sensory input. But my son is using the things given to him, and is using them appropriately, and no longer damaging household furniture. I suspect your son maybe the same. And get an Occupational Therapist assessment for SPD.

Have you tried phoning the National Autistic Society and getting their advice. And asking them for an Advocate, because you need an adult to support you in making the decisions you need to make about how to move forward, and how to get the help you need. Or is there a disability organisation within your city? Your Local Authority maybe able to give you a contact telephone number. Or you could phone Adult Services [Adult Social Services] direct - again you could get their telephone number from your local authority. But it might be worth waiting until you have seen someone at Citizens Advice. It sounds like you need adult help, and it would be adult social services that would assess you to see what you need help with. So, currently you are living in the family home? Was it owned by your mum? Was the mortgage paid off. Or is it rented accommodation? Did your mum leave a Will and who [solicitor?] is sorting out the financial side since she died. This is a disability organisation that should be able to give you some advice. http://disabilityrightsuk.org/how-we-can-help

Do you or your daughter have any interests that you could use to meet other people? Do you like walking, could you join a rambling club. Would your daughter be interested in something like Scouts - where there is a peer group and adults supervising it all? I think almost everyone can go through times of feeling and being lonely. I also don't have any close 'friends'. I also tend to spend most of my time with family [husband, children, mum, siblings etc]. And you can become isolated if you have a special needs child. Obviously that can depend on many things. For example my son goes to an independent school, which is great for supporting him with autism and OCD and other diagnoses he has. And he is with a peer group with similar needs. But it is not a local school, so he does not have any friends locally. So weekends and school holidays are spent in his bedroom. But please do not make any conclusions about how things are now and how they are going to be. Nothing is written in stone. There maybe a parent support group in your area run by the National Autistic Society. I would also suggest that you find out about their "Help" seminars, which are for parents of newly diagnosed children. When I think back to how I was at that stage it was a horrible time. We had spent years trying to get answers, and then we got the diagnosis, a leaflet and that was that. I was all at sea emotionally, my son was not coping in school. Things are alot better now. It has taken years of learning about the system, and years of fighting to get my son in the right school with the right level of support.

Lovely to hear things are going so well. My son also moved from P scales to a level 2 in english, 3 in maths and 4 in science in 18 months. It has not all been roses. He's had another bout of school refusal after the summer holidays - all new staff and therapy team. But the school are working with us really hard and we are gently getting him back in. That is what makes all the difference. This year he is one of 5 children in his class.

You will need to meet with them as that shows you are trying to resolve the issues. I know what you mean about revealing too much. Try to remember that you already have lots of questions they need to answer. So try to always put the ball back into their court. They do know what they are doing, and they are doing it deliberately. Don't answer questions like "what do you want". It isn't about what you want it is about what your daughter needs to make progress and that will require a Statement. The SEN Officer has said your daughters needs can be met from the schools delegated funding. Ask them to explain HOW they will meet each and every need she has. Is there anyone you could take with you to the meeting?

Okay, so type up a letter about that meeting, and include everything the SENCO said, as you've stated above. Just start the letter something like "Thank you for meeting with me in school on xx/xx/xx to discuss my daughter. You informed me that ....... etc. Including the hours of support she has, how that is delivered, class sizes, no SALT or OT on sight and SENCOs recommendation that those professionals should be employed on site at whatever secondary school your daughter attends. If your daughter is average cognitive ability she should be going mainstream. But she cannot go mainstream with her diagnosis, and the SENCO saying she "nearly" knows her 200 HF words! How would she access mainstream secondary education. You can phone the secondary school your daughter would automatically go to and ask them if a child who does not consistently know the first 200 high frequency words be able to access the curriculum without support. And how could she. She obviously cannot read or write yet. Have you had a meeting with the SEN Officer? If the SENCO wants to add or deny anything they will respond to that letter. And that letter is your record of evidence that you can submit at your next appeal.

Okay. So how much of that £10K is currently being spent on your daughter? And on what provision. That tells you what she is currently getting, which is not meeting her needs. Write to the LA about the SALT input required and diagnosis of an ASD. They do need to be specific [quantify and specify], what support is currently being provided and what that costs otherwise the LA cannot know if her needs can be met within that £10K budget. So ask the LA for a breakdown of how her needs will be met over and above what she is currently receiving. Your daughter will need a Statement for any 1:1 speech and language therapy as that is only funded via a Statement. Get confirmation from the school on how much 1:1 SALT and specialist teaching your daughter could receive as part of that £10K delegated funding. If they don't accept she needs specialist teaching is that in writing? If not ask them to put it in writing. And ask them how the school will access specialist teaching so that your daughter makes progress and ask about remediation [additional support to help her catch up]. You really have to push them for the specifics. If they refuse to give them to you lodge a complaint with the LA. Make their life difficult.

The SALT report placed her 4/5 years behind. She needs a speech therapist to assess her, not a specialist teacher or EP. Each professional has their specialism. So the school, or EP should refer to the NHS SALT. The Primary school should have a referral process to SALT, or a budget for SALT input/assessment. Or contact the Community SALT department yourself, and ask to speak to the Speech Therapist in charge, and ask them to assess your daughter and provide a report - or, as you have a NIL, don't bother at all doing that and just appeal and see what the Panel have to say about the SALT report, and their advice for the school to seek Speech Therapy input and how both the school and LA EP failed to do that. Mainstream secondary schools do not have a budget for SALT. If a child goes to mainstream they are supposed to be able enough not to need this type of therapy. If 1:1 SALT therapy is detailed in a report, it must go into the Statement and must be delivered wherever the placement. As the LA have issued a NIL you can either have a meeting with the LA representative and detail all the things the school/LA have not done and which require a Statement to be delivered. Ask the LA representative to confirm to you in writing within 14 days if they are going to issue a Statement. If they do not issue a Statement, do not bother speaking with them again and detailing yet again what they have failed to do. They know they have failed to do it. They have done that deliberately. Just make sure that it is all included in your case Statement about how you have had to fight every inch of the way with the LA refusing to assess, then not fulfilling the requirements as per the previous Tribunal and issuing a NIL, and how your daughter is now heading to secondary xx years behind her peers, her speech and language xx years behind, with a diagnosis of x, y and z and how both the school and LA have failed to refer your daughter to the appropriate professional and how they are failing her and how you have no faith that they will properly assess, or quantify and specify and that is why the only placement that can deliver all your daughters needs is xxxxx secondary school. And good luck. I know it has been very downheartening how they have behaved towards your daughter, put lay all this out to the next Tribunal Panel as an example of what you have been enduring for years and how your daughter now needs the placement you are seeking as the ONLY placement that can meet her needs, and provide the therapy and remediation [the professional input to help her make progress] to reach her potential.

I was thinking the same about diagnosis. Aspergers children are supposed to have typical language development up to age 3. If your son is not talking, communicating, or not appearing to understand language, then that is not Aspergers, it is more likely to be diagnosed as autistic spectrum disorder - or it is more severe, then the diagnosis might be autism. Have you also been referred to an Occupational Therapist to see if any of his behaviour is sensory related? Google sensory processing disorder/autism and read about it. Finding it funny to hurt people is again quite common. He is very young, and being on the autistic spectrum means he will have difficulties understanding language, voice tone, facial/body expression/gestures. He may find it hard to process/link emotion to behaviour so if someone is hurt and shouts out he might find their reaction "funny" and not realise the reaction is due to that person feeling pain.

What do you mean "the specialist teaching service and the schools EP did not know what to do"?

What amount of 1:1 specialist teaching is detailed in the dylexia report? And what level of qualification have they stated the teacher needs? They need to be qualified to both teach and assess, which I believe is a level 7. No specialist teacher within the school or LA will have that level of qualification. If the LA have anyone, it will be a teacher that has had a training day, nothing more. I cannot over emphasise how important it is to have specific information/advice about your daughter and what she needs and very specific information about what the school can provide. I would not wait until September. I would have that meeting with the SEN Officer asap. Take someone with you to take notes. And ask specific questions. "The SALT report states my daughter must have 2 hours a week 1:1 speech and language therapy. Can the school provide that under delegated funding? etc. If they cannot, they have to change their mind and issue a Statement. Or more likely leave you to appeal again. Did the NHS SALT assess her? If your SALT report did not state "2 hours a week", and just said something like "access to a SALT" the LA could correctly state that your daughter would have access to a SALT without a Statement. That would be via the schools budget for speech and language therapy, which would be less than 10 hours a year for the whole school. But that would still meet the recommendation for "access to a SALT", if a report is as vague as that and does not quantify and specify. The SALT report alone requires funding for around 80 hours per year of 1:1 SALT therapy. That can only be provided via a Statement.

You need very specific recommendations, otherwise the LA cannot be tied down into including it into the Statement. That is the whole point of paying for independent reports, because they should quantify and specify. Having a "dyslexia background" means nothing. Any mainstream can say they have a member of staff with a dyslexia background - which might mean they've been on a training day. The specialist teacher needs to be qualified to a Level 7 [PATOSS Website], so that they are qualified to both teach and assess. They need to be able to assess so that progress can be monitored. Was the schools response about delegated funding in writing? If not get it. If they again try to avoid the question, write to the Head of the school governors and ask them to give you that information because you have a SEN child and you need to know what the school can provide. If they don't respond lodge a complaint with the LA. You have to have every detail available to you. The inclusion officer cannot be vague. She has issued a NIL. She has said the school can meet your daughters needs without a Statement under their own delegated funding. She must know what that funding is to have made that decision. If she does not know, then I would write a letter to her stating that. Ie. you have issued a NIL and state that her current school can meet her SEN needs, yet you cannot detail to me what SEN funding the school has per pupil. "Please detail how you have issued a NIL for my daughter as she has a diagnosis of an ASD and Dyslexia. We have reports that quantify and specify SALT, OT and Specialist Teaching input in a school where there is a SALT employed on site. Her current school do not have any of those therapy staff on site and they confirm that such input would require funding via a Statement. Please confirm the delegated funding available at xxxxxx school in terms of hours of support, 1:1 therapy input from SALT, OT and Specialist Teacher and £K per pupil costing.

Delegated funding to a school does not include any therapy. School have a budget for therapy for the whole school. But if a Statement specifies xx hours of OT/SALT/Specialist teaching that cannot be funded by the school. It has to be funded via the Statement paid for by the LA. Did you write to the school asking for the delegated funding budget? Did you write to the LA asking what the delegated funding was for that school? I would suggest speaking to, then writing to the LA inclusion Officer who said the school can meet your daughters needs via the school funding. If they are certain of this, they need to prove it. So ask them verbally, and confirm what they say, or confirm the request in a letter. If they don't respond lodge a complaint. This information is not supposed to be a secret. Any parent can ask any school that question and they should be able to tell you immediately. Then, when you have the delegated funding details [of £K? per child, or hours of support per child - and ask specifically if it funds any 1:1 therapy to be specified for any child] - detail all the therapy input that is quantified and specified in reports about your daighter, and ask the LA Inclusion Officer how the school is going to fund that therapy without a Statement. Tell them she is now diagnosed with an ASD. Then post back with their repsonse. "Small class sizes" needs to be more specific. She is currently in a class of 12 and not making progress. The Statement should say "small class sizes of no more than 8 pupils". That describes a special/independent ASD type school, and rules out mainstream. "small class sizes" is not specific enough and could mean anything slightly smaller than a mainstream class size. How much 1:1 SALT therapy is specified? What about life skills?

You need to know the maximum amount of delegated funding the school can use for your daughter. It sounds like they were not using all the delegated funding [which is usually about 15 hours a week??], which may have given the LA the get out clause of saying school can do more. [but that also beggars the question of why the school were not doing more if they had the funding based on her lack of progress.] But no point arguing that point now, as you are focused on getting a Statement and then appealing that Statement for the secondary placement. So get school to detail exactly how they will meet her needs under delegated funding including the OT, Specialist Teaching, [any speech and language therapy?], etc. Get in writing how much funding is the maximum and that that is the level they will have to provide, AND there is no way that that funding will include any therapy such as specified OT, specialist teaching or SALT hours, so any report specifying that is needed. So you need to appeal the NIL to get a Statement and then appeal the finalised Statement [parts 2, 3 and 4], and include in that appeal your parental choice of placement for secondary school. They are making you jump through hoops aren't they.

It might be worth speaking to the Local Governments Ombudsman about the "assessment process" and if you can lodge a complaint with them. But I suspect the LGO will say that because you have recourse via the SEN Appeal process that they cannot get involved. But definately lodge a written complaint to the LA, and ask all the questions above and get specific information. Because if your daughter has been receiving xx hours of delegated funding and that is the total amount available under delegated funding, and she has not made progress, then the LA cannot justify their NIL saying that the school can do more, when the school confirm they cannot do more without additional funding which would only be provided via a Statement. Is she to receive specialist teaching from a qualified dyslexia teacher? Who is going to fund that? And is she on the autistic spectrum? I thought she had been recently diagnosed? Was that diagnosis included in the assessment?

That is why I want you to get something in writing from the school, and then arrange to have a meeting with this SEN Officer at the LA. The LA cannot say that her needs can be met under the delegated funding for the school IF the school are already providing the most they can do under that funding. The funding would definately NOT cover 1:1 TA time [or if it does get the school to confirm that]. If there is only one TA for another Statemented child, they cannot use that TA for your daughter. And the LA know that. So if your daughter needs 1:1 TA time how will that be funded by the school under their delegated funding. If school confirm they cannot fund that, and they confirm it in writing, that proves she needs a Statement. So you go to the LA with that letter from the school and ask them to explain how the support, specialist teaching? and anything else she needs is going to be funded by the school. You need a meeting with whoever made the wishy washy recommendations and get them to quantify and specify. That is what they are required to do under SEN law. They haven't done that. What year is your daugther in this September? Who made it clear in writing that no mainstream secondary could provide what she currently receives? And do you have anything in writing that details what she currently does receive, and which is not producing progress? That is why you need to get very specific information. That is why standardised assessments are essential. And I believe the LA EP opted out of doing those types of assessments? That enabled them to give a wishy washy report. Standardised Assessments give precise information which makes it very clear what type and level of support/therapy/specialist teaching is needed.

This is a link to the Dyslexia Action information about the changes to SEN law. http://www.dyslexiaaction.org.uk/files/dyslexiaaction/guide_to_help_parents_and_carers_navigate_the_changes_in_special_educational_needs_and_disability_provision.pdf It might be worth talking to them, or the BDA or Ipsea to find out exactly what you need to do to move forward with this. For the local authority to have come to that decision it seems to suggest that the school do have something additional to offer that they were not offering before?? So can you get that confirmed from the school. Ie. ask them what they can provide that is additional to what was provided previously, and ask them why they did not provide it before. Because if the LA believes the school can meet her needs, they need to put on paper how exactly they will achieve that and what additional input they are going to provide to ensure there is then progress. It might be worth not mentioning to the school the NIL in that letter. Just ask the school what they can provide for your daughter that is significantly different or additional to what she has been receiving to ensure she makes progress, and see what their letter says. The LA have used a common get out clause, ie. that the school can do more. So why weren't the school doing that? For my son we ended up in a meeting where we had to pin the school down to finally admitting that there was nothing additional that they could provide. And we were recording the meeting. And in the meantime you proceed with the appeal, in the hope that before the actual tribunal date the LA does decide to issue a Educational Need and Health Care Plan. But you must feel so angry, deflated and totally let down by this system.

So does that mean that the LA are saying that her needs can be met by her school under School Action Plus? Is she not already on that? And falling further behind??

You do not need to wait until he is 12 for respite. You write a letter to the Head of Childrens Services at your Local Authority ask that a Core Assessment of need is carried out on your son and on you as a Carer. Childrens services are legally obliged to carry out assessments when asked to do so. But make sure the request is in writing to the Head of Childrens Services at your Local Authority. Ask for him to respond within 14 working days. If you get no response, or a refusal, lodge a complaint via the Local Authority complaints procedure. If you still get no satisfaction go to the Local Governments Ombudsman who will force the LA to assess. Is your son under any medical professional at the moment ie. educational or clinical psychologist? Or does his special school have access to an OT? You need to ask a medical professional to come to the house to see how he is, to observe him and to give you advice. It maybe a sensory issue in the house where he is getting overwhelmed by sensory stimulus and therefore is too hyper at home. You probably know that for autism "less" is "more" [unless he is hypo sensitive and needs more stimulation - but does not sound like that!], so remove lots of visually distracting things, noisy or smelly things [vaccumn cleaner, house fresheners etc] If possible ask school if you can "shadow" him with his TA/teacher for a couple of hours and see what the school environment is like and what his behaviour is like in school and what they do/say to get his attention and for him to comply. This is a link to an organisation that can help give you advice on how to get an assessment for you and your son for respite and other support for out of school hours, or for respite in his school [if they have that facility]. http://disabilityrightsuk.org/steps-getting-assessment-social-services

I think your situation is quite common. As there is probably a genetic link to autism, if is common to find multiple family members with the same diagnosis, although how it affects each person maybe different. Have you talked about your thoughts with your parents/siblings? You may find that they understand you better than you think. What do you hope to achieve or gain by getting a diagnosis as an adult?