Sally44

Is this relating to a child or adult? And what is their functioning level. And can you give specific examples?

I'm not in the London area, so don't have anything personal experience of groups to give you. The only thing I can think of is if you contact the National Autistic Society as there must be local groups in London. Whether you would want to volunteer some time to the NAS itself, and meet people that way - or if there is a specific NAS group in the London area that meets for social purposes?? Let us know if you find anything.

Glad, and interested, to hear how they sorted out the dental work. Ambulances with gas and air is worth knowing about. I think alot of peoples experience is that something like that would be offered as the very last resort. That means the child/adult on the autistic spectrum has to fail to access what they need [dental work or hospital operation etc] for quite a long time before this would be offered. Often that leaves the child/adult in pain or discomfort during the process. And gives them a number of negative experiences of trying to access services and failing, which can make them anxious about any dental, GP, hospital visit and refuse to cooperate. I think the difference was the gas and air, and also you being involved. Glen knows you [and you know Glen], better than anyone else. It is about getting a balance of your involvement - because you do want to be involved with Glen, and for the staff to see how you do things with Glen and how Glen responds to you. It is very important that those on the autistic spectrum get to know and trust other adults that support them. But that can take years to achieve.

I think that firstly you need to find out IF you should be being charged at all for this service. My understanding is that the government is legally required to provide "short breaks" by law. And I don't know if that can cover respite. Respite can be for the individual or for the family members. Again I don't know what the criteria is for this, and whether you could get it free another way. For example, Direct Payments? Then you pay for the respite with the direct payments. You are not charged for direct payments. If your son is unemployable, is ESA the right benefit for that? I don't know as things have changed so much. If he is unemployable, I presume he also gets Disability Living Allowance? And is he getting that at the right level? If your son gets DLA that makes you eligible for Carers Allowance, and may help reduce your Council Tax bill etc. I would suggest that you have a complete benefits check. There maybe someone at Citizens Advice that is an expert on benefits, or sometimes there is a independent section at your local authority that can look at your situation and finances and check that you are getting all the benefits you are entitled to. They should also be able to tell you if it is right that you are being charged for respite. This is a link to another website that should also be able to give you some good advice. They helped me to get Social Services to carry out a Core Assessment on my son and also a Carers Assessment for myself. Social Services are supposed to assess on need, and provide a service or Direct Payments. We are not being charged for the respite we have, or the Direct Payments we are finally going to receive. Remember that all local authorities can have their own "criteria" for accessing services, and for charging for those services. But that might not make them legal. If they are failing to provide what you and your son are legally entitled to receive, then the Ombudsman will step in. But first you have to prove that you have followed your own local authorities complaints procedure. So I would recommend you contact this organisation, http://disabilityrightsuk.org/how-we-can-help and also your local Citizens Advice. I understand that you are wanting to raise awareness of your situation. But that is not going to change the situation you are in. You need to get organisations involved that can tell you what you are legally entitled to and whether your local authority has acted legally or not and what you can do about it.

Why are they charging for respite? My son gets respite and isn't charged for it. How old is your son? And if he is on ESA how come he needs respite because that sounds like he is not employable? Find out if you can complain to the Local Governments Ombudsman. They can investigate complaints against local authorities and their employees [which includes social services]. And if they find in your favour they can order the LA to pay you compensation. Our local authority delayed the implementation of respite and were ordered to pay us £700 compensation.

As they are local authority employees who have not assessed and who are charging you, you can complain to the local governments ombudsman. You would need to lodge a complaint first with your local authority and follow their complaints procedure, and then contact the LGO. If it is an NHS related charge you can complain via the Parliamentary and Health Ombudsman. You would speak to them for advice on how to lodge a complaint. I believe you have to write to your MP first and they send it onto the Ombudsman. But please check. My understanding is that Social Care is required to provide respite or Direct Payments. How have their explained the charge?

I think it could be especially useful as part of the OCD maybe these sexual thoughts. Have you queried about OCD with CAHMS? Because he does sound like he has it. I suggest you bring it up and ask that he is assessed for OCD to rule it in or out. I'm not sure what a "thought disorder" is. OCD is a thought disorder relating to anxiety. And without a diagnosis of OCD [if that is what he has], he will simply be given another 'diagnosis' such as a "neurosis" or "psychotic episode". OCD is very common with those on the spectrum. Many just have traits, but not enough to be clinically significant to the extent they are affecting the persons life. Your son's life is being effected quite significantly.

Then OCD needs to be recognised and diagnosed. What you need to consider is that Childrens Services will look at how your son is vulnerable, and how he might be a potential threat to other children at home or in school etc with the things he is saying?? So you will need medical evidence that what he says is not what he wants to do. If you look into OCD you will find that alot of people with OCD have sexual thoughts that they maybe paedophiles or other types of sexual thoughts. That does not mean they are going to act them out. That is what OCD can be to some people. Have a look on www.ocduk.org on the discussion forums to see what kinds of worries and obsessions people have. This is a link that gives a brief outline of what OCD is and it includes sexual thoughts. http://www.ocduk.org/obsessions-compulsions There is alot more to OCD than being an obsessive cleaner.

Does your son have a Statement of SEN?

Cathcart is right about the funding of residential being under the Statement and Education. However we found ourselves in a situation where OCD was causing the school refusal and low attendance, which is a mental health disorder. OCD is affecting his ability to access education, but the LA have refused to fund any residential. The NHS has also not agreed to fund any residential eventhough OCD is a health disorder. So that left Childrens Services, who can only fund a certain amount of residential via respite. After that they can only fund further residential under a Section 20, and that means there has to be concerns by Childrens Services about the child's safety and capacity of the parents. You may find yourselves in that position. As said above, fostering is not going to resolve any of the issues. It will make them worse. You need the right placement for your son, probably a weekly residential with your son coming home at weekends and during holidays? That is what you need to be seeking. Be very careful of Childrens Services involvement because they do assess very differently to other professionals and they don't necessarily agree with or even consider other professionals opinions and advice. You need a definate answer from the ASD school about whether there is a place available for your son and what support he would get in school via his Statement - as you may well need to go to tribunal to get the placement and to get the right level of support and therapy into the Statement too.

My understanding is that if it does go to Court ie. Childrens Services decide he should be a Cared For Child and that parents do not have parental capacity, then your son can get a solicitor to represent him and because they are representing a child, you do not have to cover the fees. The problem in your case seems to be the fact that your son is saying he does not want to be at home. So you may need to prove that your son does not have capacity to make that decision. But I am not 100% sure on that, so get advice from The Family Rights Group.

Childrens Services are supposed to provide services and support to keep children with their families unless there are safeguarding issues relating to neglect, abuse or parental capacity. My son's SW talked about fostering. We think that was said to try to scare us. In our case our son has ASD and OCD and has been refusing school. Then he did something that potentially could have resulted in him seriously injuring himself. Because we had been asking for support for our son and help for us and nothing was being offered, I had said that due to increase in school refusal we were unable to be at home to supervise him and he could potentially be left home alone. That caused Child Protection Meetings to start and CS offered to fund 5 nights residential a week under a Section 20, with us retaining parental capacity. Anyway, things seem to be getting back on track now. I have said that he has never been left alone. And CS seem to accept that. But I had basically put us in a dangerous position where my son is vulnerable, and then he had done something where there was potential to injure himself and I had said he is left alone. Not a good idea. But at the time I was desperate for professionals to actually do something instead of continually fobbing us off and not supporting our son so that he could access education. So basically I had lied to try to get the support my son needed in place. But it could have backfired and he could have been taken into care. I didn't realise the seriousness of what I had said at the time. I just said it out of sheer frustration, not thinking how Childrens Services would view the information I had given them. Childrens Services are a law unto themselves. They do not seem to listen to any other professional. I have had to complain about this. For example, CAHMS Psychiatrist has said that the OCD compulsions my son has to cut his hair and eyelashes is due to OCD and is not self harm. Childrens Services continue to be of the opinion that it is self harm and that parents are being negligent in not removing all items that he could use to self harm with. Our argument is that he can use the hairclippers and sissors safely. If we remove those items he will still have his OCD compulsions and will try to cut his hair using something else, that might be more dangerous than using hair clippers. Regarding fostering. We argued that our son is on the autistic spectrum and therefore he needs consistency. Changes in those that care for him and changes in transitions will cause him more anxiety. Our son has never said he did not want to be at home. Yours has. Childrens Services will be listening to what your son wants. So what is your argument against what your son is saying to Childrens Services?

I would also advise you to get in touch with the Family Rights Group. They are a charity that specialises in giving legal advice for families where Childrens Services have become involved. We have been in a slightly similar position, but for different reasons. Firstly, why do Childrens Services think that fostering is going to be of any benefit to your son rather than him staying with his family? Is any professional attributing any of his behaviour or thoughts to issues at home? Are Childrens Services talking about a Section 20 residential placement in school? Are Childrens Services questioning parental capacity? Has any professional talked about the type of placement your son needs? Can you get a definite answer from your parental choice of school as to whether they could meet your son's needs? Can you be a bit more specific about what it is your son has said that they are so concerned about? Why was your son refusing to return home and running away from home?

If at all avoidable I don't want to move my son again. He has been to mainstream primary, enhanced resource primary and now his current placement. The individual staff and therapy team are great. BUT no-one seems to communicate with eachother. So you agree with one staff member to proceed in a certain way, but no-one else seems to know or do it. The Deputy Head, SENCO and Head definitely don't like the fact that I have complained about how they handled the AR. And that I have written to the LA stating that my son has not made any progress this year. Last week is when a member of staff told my son he and his family could get into trouble if he did not attend lessons. In that instance they were asking him to do something that is one of his OCD obsessions. There is no way he would comply. But in general he always does what he is told because he likes to follow the rules and he does not like to get into trouble. By school saying what they did to my son that caused him to lie down and refuse to move. And although school say he had a good day apart from that - which I don't dispute - the fact is that my son refused school the next day because he believes he will be forced to do things his OCD say will contaminate him. So I asked school if they thought how their member of staff had handled the situation had had a positive outcome when it caused him to show negative behaviour and refuse school. School replied by saying that they want a GP's note for every day he refuses school. I don't think the GP will even do that. And I don't think the school can insist on that. The SW has said it is not workable. Things have deteriorated to such an extent that I am now using a dictaphone to record every single telephone conversation I have. I've told school that THEY are causing alot of his school refusal. School seem to be accusing me of not trying to get him into school! I'm not sure what the implied benefit is to me to have him at home all day out of school. I seem to have the Social Worker on my side with this - that is amazing in itself. But school don't like it. I will be glad when this year is over. I hope he has a different teacher next year.

I am really unimpressed with how my son's school have handled the Annual Review and also his diagnosis of OCD. No recommendations were made at the AR, eventhough he has not made any academic progress last year and has fallen further behind and deteriorated in some subjects. Attendance is around 60% at the moment. The Head has written saying that they provide more support for my son than the Statement details. No Decision Letter from the LA yet. My son is really struggling with OCD at times, and the school do not seem to recognise it for what it is. Had an incident last week where a member of staff told my son that "if you refuse to attend lessons, you and your family will get into trouble." This was because they were having an 'art lesson' in a field, and my son has contamination OCD and refused to go onto the grass. Medical advice to school is not to pressure him to do things he cannot do due to OCD. So, due to fear of getting himself and his family into trouble, he did go onto the grass. But he refused school the next day. So I asked school if they felt their approach had been worth it. There is another school closer to home that we are going to go and have a look around. I just don't really want to move my son again. It takes him years to settle in. But I am sick to the back teeth of how the school are responding. They've also said that from now on they want a sick note for each day he does not attend school. Even Childrens Services have said that that is unworkable. School have a diagnosis of OCD from CAHMS and a letter from the Paediatrician stating that his bowel problems are due to anxiety. What more do they want? I really expected much better from a specialist independent ASD specific school. I don't know whether to take it higher and lodge a formal complaint.

Don't listen to what the school say. SEN law does not say anywhere that a child has to be 6 years behind before they get any help. All professionals for just about every diagnoses you can get, will say that the earlier the need is identified and supported the better the prognosis. Letting a child fall further and further behind, leaving them to get frustrated and lose confidence and have self esteem issues - how is that in the best interests of the child? It is just about the LA saving money. The SEND Panel will not be impressed with that at all. That is your local authorities own criteria, not SEN law.

The best time to have any independent reports done is when you have lodged an appeal and you have the appeal date. You need your independent reports to be the most up to date ones submitted to SEND. But do search now for who you think you would want to do those reports if needed. In the meantime, yes you can ask the NHS OT and SALT to re-assess. The excuse the SALT gave was just that, an excuse. It was said to make you feel bad about the time you were asking for your child when they were telling you they had other clients "with much more severe need". The Statement is supposed to detail each and every need in part 2. Part 3 must quantify and specify provision for each of those needs including school staffing arrangements, therapy in terms of hours per term/1:1 each week. Plus additional time needed to plan, observe, train, take notes, carry out annual reviews of assessments and submit updated report for the annual review of the statement. When the provision is quantified and specified in the Statement the LA becomes responsible to fund that. So if the NHS does not have a suitable SALT available, or your child needs more than the NHS typically provides, then the LA has to fund the difference. That is why it is so important to get the Statement right because it ring fences the amount of money your child needs to fund their Statement. The SEN Statementing process is changing, I think from September. I would seek clarification on what those differences are going to be. Somewhere like www.ipsea.org.uk should be able to give you that information.

I think the thing to take from this diagnosis is that your daughter is obviously capable to have crept under the radar for so long. Now you have the diagnosis [and also specific learning difficulty], you should get the Statement and if you get that as tight as you can for it to be meeting all her needs, legally binding, and in the right placement, then she should go far. Feel free to have a cry, and go through the emotions you will undoubtedly have now that you know that all your children are on the autistic spectrum. Then give yourself a big hug and congratulate yourself and your husband on having managed to get to the stage you are now at with all your children. Try to take some time off to relax and have some time with your husband before the next stage.

The most basic ones are being punctual and being reliable. We are a small business with just 5 employees. It has a major effect on the daily running of the business if you cannot rely on your employees to turn up on time, or even at all. In our line of business [food] you have to have a real interest in the work. So I recognise that "following your passion" could potentially help the individual find work that they want to get out of bed for. I know some interests can be very specific. But gaining a good GCSE in their specific area of interest may help them get work in a related area? I think that GCSEs in any subject simply demonstrate potential. So going for ex-curricular subjects is not a problem for me, as long as that subject does demonstrate real skills. Afterall, how many of us use any of the O Level information we learnt in our day to day lives? [showing my age there]. But getting good O Level or A Level grades demonstrated potential to employers. You only need to have specific GCSEs if you are going for a particular professional degree and career such as a doctor or lawyer.

Every service has had funds cut back. BUT a Statement of SEN is a legally binding document. So whatever is in the Statement MUST be funded by your local authority and provided in school. That also includes therapy from NHS services. For example, a local secondary school might have a budget of 5 hours per term for an educational psychologist to come and give them advice. If your son's Statement says that the EP must see your son and give advice to school on a termly basis of 5 hours, then the LA must fund that. If a speech therapist report says that your son needs 1 hour a week 1:1 for speech and language and social interaction skills, then the LA must fund it. So it is all about getting professional advice in writing and getting that into the Statement. Currently my LA pay for my son to be at an ASD independent school, and they also pay for a specialist dyslexia teacher too [as he has dyslexia as well as ASD and OCD] for 6 hours a week, and they also fund some overnight stays. My son's school has occupational therapists and speech and language therapists employed on site and they see him nearly every day. The total cost to the LA is around £60K. And the whole point of providing this is so that he is more able as an adult so he can be a productive member of society. Special Educational Needs law is changing. Organisations such as www.ipsea.org.uk can give advice on educational issues and Statements, so can the NAS and an organisation called network81.org. Contact the NAS and see if you have a local group and if they are holding any educational seminars about statements etc. Do not wait for the help to be offered. It never will be. You have to be proactive, and get a Statement for your son and a placement at a school where he can access education, reach his potential and where they can also meet his anxiety and OCD needs.

If your son is 12 has he just started secondary school? Is he at a mainstream school? What are his academic grades like? What are his social skills like? If he is refusing school that is for a reason. My son is 13 with ASD and OCD. We went to an educational tribunal in 2011 and moved him to an independent special school for children with an ASD who are cognitively able. He refused school at the Local primary and was out of school for a year. The OCD and increase in OCD will be related to stress and anxiety and that is most likely happening in school. But he will also have his rituals at home too. What we do is we do not let him control us at all. When his OCD is bad he will try to get me to carry out compulsions to reassure him. He will also ask for reassurance alot about whether something is clean or contaminated. We just pass the question back to him "what do you think". We also tell him that OCD is "just a thought" ie. not real, although to the OCD sufferer it is very real indeed. I have found the OCDUK.org website very helpful. I would say take demands off him. There is no point offering rewards or punishments for a medical condition like OCD. The World Health Organisation ranks OCD as one of the 10th most debilitating illnesses there are. Is your son under CAHMS? Have they followed the NHS NICE Guidance and referred him to a Clincial Psychologist for Cognitive Behavioural Therapy? Ideally this should all be included in your son's Statement of SEN. We are seeking CBT, but for it to be delivered in school and at home. I cannot over emphasize how frightening OCD is for a child, nevermind one with an ASD as well. What type of OCD does your son have? The only thing that worked for us [and sometimes even that is not enough], was the move to his current school. However when his OCD is bad his attendance drops, currently at around 60%. And eventhough my son has a Statement we have still had to fight to get CAHMS onboard, and get a referal to ClinPsych, as they kept refusing to accept the referrals from CAHMS and School. They were not following their own NHS NICE Guidance. I contacted Patient Liaision Service and they liaised with ClinPsych and that caused them to change their mind and accept a referral. There is the Maudsley Hospital where they do have specialists in OCD and ASD. So if there are no local services, you can ask your GP to refer you on to the Maudsley. Our son also went through a phase of getting very angry/upset. Hitting me, and also stealing from the supermarket. Clinical Psychology said that it was all to do with low self esteem and struggling due to ASD and OCD. Soon after that he totally refused school for a year, and personally I think he had some kind of breakdown. So it is really important that you take demands off him, and if he is not coping that you get professional help and do not force him to do things he is obviously not coping with - and that might include a reduced timetable in school. He may become too ill/anxious to attend school. What other schooling options do you have in your area?

Yes, through the NAS I went to the "Help" seminars that helped enormously in trying to get a grip on what autism was and where my son seemed to dip in and out of the 'spectrum'. Another person who had a profound affect on me was Olga Bogdashina. She talks alot about the sensory perceptual and processing of those on the spectrum. And it became very clear to me that alot of my son's "autistic" behaviour was due to sensory perception and processing. We just need to be thankful of those people that dedicate their lives to researching and passing on their knowledge.

It is a joke isn't it. That is why I always bang on about Standardised Assessments. You cannot dispute them. So every professional involved should be asked verbally and in writing to carry out standardised assessments. From those scores you can identify what cognitive ability the child has, you can identify all the strengths and weaknesses a child has, and just as important, you can measure what progress they make year on year. Telephone conversations and observations are not going to identify each and every need. Who was the telephone call with?

I think that if those with an ASD can gain a GCSE in a certain subject, which maybe along their interests, that can only be a good thing as it demonstrates ability. But I also think that alot of Universities and Colleges have courses that are irrelevant as qualifications as they are not recognised by the relevant industries. So swings and aroundabouts. As an employer myself, we find that young adults often do not have the skills needed to be employable. And i'm not talking ASD either. Just mainstream kids.

So this is still a local authority maintained school. Is it mainstream or special needs? And what cognitive ability are the children at this school. Remember that places are always limited. So if there is any hope of the current school working, the LA will push for that. So you need to be saying and proving that XXXX school is the ONLY one that can meet your child's needs. And if they are saying it is full, start looking at independent ASD schools, they are much more expensive, and the LA would prefer to pay for a maintained school placement, rather than an independent one. Just wanted to ask, are you being realistic about your child being reintroduced mainstream at 16? Usually things get harder as they get older. And if your child is not able to reintegrate, what are the schooling options then? Sometimes it is better to argue that xxxx school is the only one that can meet your child's needs, and they can remain at that school up to age 19. Remember that transitions are very difficult for our children and it can take then years to settle in to a new school.