Tez

Service dogs are available for people with Aspergers in the UK. I'm just starting to look into the supply myself. I had a conversation with an advisor from Autism West Midlands whose won daughter is on the spectrum and has recently been provided with a dog which has accompanied her to university. Look at any of the charities supplying dogs to people with disabilities and see what their criteria is. Some of those I looked at require the recipient to go away on a residential course for training with the dog. This is so that the dog can be trained to meet the needs of the recipient and a relationship can be developed in a structured environment. This would not be appropriate or possible in my son's case. However, when I phoned the charities they did say that there were ways around it.

As you may be aware, it is sometimes difficult to get a diagnosis of AS as an adult. However, the important thing for employment purposes is not the diagnosis but a recognition of the difficulties that any individual experiences on their medical records and that this has a substansial permanent effect on their ability to carry out their normal day to day activities - this includes communication. Once this is documented, the individual may be covered by the DDA and reasonable adjustments should be made by the employer provided that they are made aware of the difficulties. I agree with the previous comment that the starting point is the GP, but don't worry too much about whether an official diagnosis is given, concentrate on explaining the difficulties that your DP has and how these difficulties affect him in his day to day life including his warning at work and his action plan to improve, but be quite clear that you don't see it as a get out of jail free card.

As I'm on the spectrum I can relate to what you're saying, but the way I look at it if it was me, is that it's a question of problem ownership and in the same situation as you, I would consider it my problem, not your sisters or your friend. I'd wish them well and hope that all turned out to be perfect for them and then deal with my own feelings in private. I have been in a similar situation where I felt this way about something my mother did. Rationally I knew she'd done nothing wrong, that it was absolutely nothing to do with me, but it went against my rule base and caused problems for me. I've never told her the problems it caused me. I smiled told her of course she should go ahead with what she wanted to do and wished her well. Sometimes it still hurts me inside and it's years on, but why should I make it anyone else's problem but mine. I think if I found it too difficult to cope with, I'd know that I would need to speak to a Counsellor to help me, but I would never want my rule structure to stop someone else having a chance of happiness.

I've only recently returned to looking at posts on this forum after some years' absence, so maybe I can add an outsider's view. I personally don't think from the recent posts I've read that there is a culture of blame on the forum. I think that the management of any forum will set its direction and feel and that anybody searching for on-line support will find a home with a forum which suits their style of communication and working and will leave those where they feel uncomfortable or unable to relate to others’ experiences, support or advice. You can't please all the people all the time, so just create a niche working with your strengths and experience. For me, this forum's strength is how it supports using the statutory processes that are supposed to underpin the services which we receive. It's a safety net, which in cases where things seem to be going well, says I really do trust you and thank you for all you've done, but I want to do this one by the book. I think that sometimes this is taken as a criticism of schools, medical profession or what ever. I don't think it is; I think it's just a sensible belt and braces approach, just in case the situation has been misread, and all is not going quite as well as the parent might think. I think the advice should be neither trust nor distrust, just ensure things are done properly. If utilised properly this method shouldn't undermine any relationships or understanding between parents and professionals. However, we are all human and sometimes this approach is seen as threatening and unsupportive by the Professionals on the receiving end. I think there is a dilemma in responding to any post as to exactly what you say:- 1. Do you just answer any questions specifically asked? 2. Do you read between the lines and answer what you think may be behind the question but not specifically stated? 3. Does the post sound warning bells to you, and do you want to suggest some element of caution or a more formal approach? 4. If so, how do you give this information? Based on my own personal experience, I would have wanted any potential problems that I was over looking pointed out to me. It would then be up to me to decide what I wanted to do with that information. As a parent who is on the spectrum herself, I was at times too trusting and socially naive and at times thought I was being supported and helped when I wasn’t, and as such left myself wide open to problems and delaying tactics. It was only when I adopted a belt and braces approach with the full understanding of my Champions within the system; that many of my child’s problems started to be understood and resolved. Those Professionals who backed me, found my belt and braces approach also helped them. I just made sure that I spoke to them about what I was doing and ensured their understanding of why I felt the need to take the action I did. It did not sour any good relationships I built up. It strengthened them as they were still built upon mutual honesty and understanding. This forum taught me to do that.

Thanks Both. Bid, I remember that you were just starting out on the road to dx when I stopped visiting the forum. Hope having the dx has helped you. Glad to hear that things have improved for your son. Kathryn, I hope things are better for your daughter too. We're about to enter a whole new stage with my son as he's now 18 and things haven't improved sufficiently yet for him to cope in a regular educational environment or even a work place. As for me. The day the Educational Welfare Officer told me to read up about Asperger's as she thought it might answer my questions about my son - was the day I realised I was on the spectrum.I 've never really felt the need for an official dx, but as I've always had problems with anxiety, maybe a proper label will help. Ironically I didn't see the Consultant with a view to getting an dx for Aspergers, I'm sure if I'd try to seek a dx I would have found it practically impossible to get.

Hi Everyone, It's been some years since I've visited this forum and so many things have happened in the meantime. I found everyone's help invaluable just after my son's diagnosis and whilst I took a route few others go down for his education, it was the advice on this forum that helped give me the confidence that I was the expert who knew what was best for him, not the system. Some years down the road, he's a much happier and secure person than the boy who had a complete break down at 13. I've had an appointment myself today and the Consultant thinks that I may be on the spectrum. No surprise there to me... I already know, but she wants to see me again in a month's time before she makes any official diagnosis. Seems strange that at the age of 50 I might eventually have a formal diagnosis and at a time when I'm probably coping better than I ever have in my life.

I hope you get a positive response. I can fully understand your concerns, my son has just had to write a similar piece for his English GCSE coursework (A life in the day of AK an autistic teenager), but he's refusing to hand it over because he says it's too personal and people won't understand. I'd love to see your article. Could you PM it to me and would you mind if I showed it to my son? Enjoy your lunch tomorrow.

Hi, My son was dx'd at 13 and I attended a NAS Help programme when he was 14. The one I attended was specifically aimed at parent's of older children. Most of the parent's had children around Secondary school age. It was well worth attending.

My LEA are always coming out with statements such as these, obviously believing that they're right they even put them in writing to me, despite my son's statutory assessment identifying the problems as part of his disability and outside of his control. Big mistake! The fact that I could prove that such things had been said made it a disability discrimination issue and something that the DRC were prepared to take through tribunal for me. You could try giving them a ring for advice if you can't sort it without having a bit of ammunition.

Wlcome eldars angel. I'd suggest you just browse through the forum and get a general idea for now. If your friend has any particular concerns or wants answers to specific questions you could use the search facility or start your own thread. Lots of useful info. Try looking at the thread on DLA :- Here and Here

Glad you got your dx. Take care of yourself. It's a funny time, even when you're expecting the dx it can still be a bit emotional, but at least you now have the dx to aid understanding and get support.

Hi PSH, CarerQuie is right. We were in the same position as you. No school could meet A's needs because the changes they would have needed to make to the environment in order to meet A's sensory needs would not have been considered reasonable adjustments or compatible with the needs of the other children. We used that to get the LEA to pay for A's education at home. Regardless of what the LEA's letter eventually says I'm sure that there will be something you can use to your advantage. If you're absolutely set on the mainstream school you named, go and fight for it. If you'd rather have specialist provision use the mainstream's refusal to have your son as ammunition. Sorry they're still messing you about, I know how frustrating it can be, took me 11 months from when I first got A's provisional statement to getting his educational provision sorted and agreed. Even finalising the statement didn't get the provision that had already been agreed! Thinking of you. Let us know what the reasons for refusal are when you get the letter.

I think Emum, BusyLizzie100 and others have said it all, but just wanted to wish you good luck and if when you see the copy for approval you're not happy and you can't the adjustments you want, just veto it; after all the intention is to help you, not make matters worse. Hopefully it will be the turning point you're looking for and will bring about a little more understanding at work. Good luck.

Hi, Both my son and myself go through periods like this when our anxieties are high and trying to stop them just agitates them. From my own experiences, and the advice I've been given by A's psychiatrist, its no use dealing with the symptoms, the obssessive tendencies, unless you also deal with the root cause of the anxieties, otherwise you are merely papering over the cracks and are setting up the conditions for an exploding time bomb. The problems may seem to disappear with medication but this is rarely the case, they're hidden below the surface. You obviously think that school is at the root of your son's problems. I'd suggest going in and talking to them and seeing what you can sort out to help him. At the same time, I would see your GP and get a referral to CAMHS for help.

Hi Nutty nemo, I can really emphasise with this one. A was severely bullied at school and the school, despite their best attempts - they created safe areas, gave him support etc. - were utterly powerless to stop it. We involved the police in one incident which occured in school during school time and where A sustained a broken wrist, but there were many incidents that happened in front of teachers because the bullies just didn't care, for instance, A was kicked continuously in the private parts in a drama lesson in front of a teacher. A did nothing to provoke the incident and was so badly hurt that the school had to phone me to fetch him home. At one point the bullies even kicked the door of the safe room off its hinges. Things got so bad that A's mental health suffered and the school finally admitted that they could no longer ensure his safety and asked me to keep him at home until they could make alternative arrangements with the LEA for his education. Thankfully, this turned out to be the right thing for my son. He now has a statement and is educated at home with my LEA footing the bill and adminstering and managing his curriculum. A is a completely different child and on the way to recovery. It has been a long fight - taken about 18 months but we got there. Whatever you do try to use the situation to your advantage. What happened to your son is terrible, but try to use it to get what you want for your son through the statementing process, if EOTAS is not what's in the best interests of your child fight for what is, be it full time 1 to 1 support, private school whatever, and try to use the school's admission that they can't keep your son safe to get it, using the EP and your son's doctors to back you.

A was a model pupil as well. He'd be awarded a prize every year for being the best pupil in the class based both on academic achievement and behaviour, he was never, ever in trouble, but as you so rightly say that doesn't mean that the child doesn't have problems. It took me many years to prove that, and a very nasty bullying incident before anyone would listen to me and even then, the only person who would listen was one particularly diligent and kind Deputy Head who made it his business to get to know A and observe him, much as an EP would, and who then supported and helped both me and A. Got to say my husband wants to nominate him for an award, but basically I think that you do need a champion within the education system to back your comments and support your case.

Academically my son had no problems in school. However, he had numerous emotional problems due to the unsuitability of the environment and how they impacted on his anxieties, sensory integration problems and asd. It was a bit of a fight, but our LEA did assess his needs and based on the expert advice that he needed to be educated in the home our LEA finance and manage his home education. I'm sure the same could be obtained for an independent school provided that you could prove that it was the only way that his needs could be met. If an ordinary state school could meet his needs, even though it might not be the best school for him you'd be struggling. I'm also not sure how you'd stand as he's no longer in an LEA school, not sure how the LEA stands regarding the assessment process. You could try giving IPSEA a ring and seeing what they advise.

A has been registered at a virtual school since April of this year, our LEA foots the bill and it's written into Part 4 of A's statement together with support from the mainstream school that he remains registered with and some 1 to 1 tuition in the home. Whilst it's millions of times better than being in a large mainstream comprehensive, it's still far from ideal. Due to A's sensory problems and particularly his hyperacausis he can't access the online lessons. Although the students do use text talk to communicate in class, there are occasions when microphones are used and interactive white boards with student participation are used frequently. The teacher delivers the lessons via microphone and white boards but also communicates privately or openly via text. A actually finds some of the text talk irritating, and it creates the same behaviour and discipline problems as in a mainstream school. He also finds that the set up tries to imitate a school classroom too closely and he finds that very off putting. However, he has developed a good relationship with the tutors and they have virtually created a separate set up for him, they email him power point presentations and keep in contact via email, which for him works much better. In general, the standard of teaching and feedback is variable, the Science tuition is excellent and has enabled him to work to a very high standard and the teachers are more than willing to answer the questions he posed. The virtual school that A is registered with does not require the pupils to log on for 5 hours per day. Each pupil is registered for a range of subjects, it might be only one, it may be more. Live lessons are scheduled for those subjects and the pupils are expected to attend. Each lesson is 45 minutes long. However, if for any reason they don't, the lessons are recorded and can be downloaded and viewed off line at any time and even used for revision. Based on these lessons, there are follow up assignments to complete by set deadlines which are submitted and returned electronically via the virtual school website. The actual virtual school tries to foster a social relationship between those pupils who are registered, there is a common room, and the opportunity to chat and intereact before and after lessons. A is definitely not interested in this side of things, but it does give other pupils, such as those with ME the opportunity to talk to people of a similar age or those with similar interests. Based on this understanding, our LEA have now registered him with a distance learning company as well, which delivers the curriculum via correspondence material and individual tutor support, but which is specifically aimed at 13-18 year olds who are home educated. He's still registered with the virtual school and continues to access his Science in this manner, and a limited amount of English and Mathematics.

The Educational Psychologist would have been well aware of the LEA's stance when they recommended you applied for a statement so your child must need the extra support. Chances are that when the assessment is carried out the hours will be in excess of 15 and if not and a statement is not issued appeal to SENDIST. It is not unusual for a child to need more than 15 hours support, even if they are highly intelligent and well behaved.

Suze, Hope all goes well for you and your daughter today. Will be thinking about you. <'> <'> <'>

Yes Canopus mainstream schools can teach them, it was discussed between the LEA and A's school at a meeting I was present at.

They can offer non-European languages. I know from when I was looking for GCSE courses for A the other day that AQA offer Panjabi as a language option for non-Panjabi speakers at GCSE and I believe that other exam boards do as well. Not sure how many mainstream schools actually offer it as an option though.

Sensory diets are explained on these websites:- Sensory diet activities Sample sensory diet There are lots of other websites if you just google sensory diet.

The really sad thing about Ashley's story is the local education authority still hasn't learnt. There is still no autism specific provision within the LEA involved, the teaching staff have no asd awareness and they are completely unable to cater for bright pupils on the spectrum. Ashley was not an isolated case, this is my LEA and I know that there have been several other suicides amoung asd pupils still at school, that whilst shocking the LEA officials at the time hasn't brought about any changes. Karen <'> <'>

If you really don't want your son to have the test, then you could always just tell your daughter, when the time is right, that there is a possibility that she may be a carrier of the fragilex gene and leave it to her to decide whether or not to have genetic testing prior to having children. I don't have a great deal of knowledge about fragilex, but would having it officially identified help your son is any way? Thinking of you, and I know that whatever you decide it'll be the right decision for you ande your family.