Sally44

I thought that professionals could not give a dual diagnosis of attachment disorder and ASD?? That is why a wrong diagnosis can be so potentially harmful, because once you are going down the path of a diagnosis of Attachment Disorder you are not meeting any ASD specific professionals and ASD is not even going to be investigated. It is very hard for parents to be dealing with a diagnosis, whilst also having to learn about the SEN system and access to support/therapy etc that their child may need, when their very involvement and insistence of finding "what is wrong" - and that insistence is often needed to get even basic things done and put in place - can then be questioned by professionals as possible MSBP, Attachment Disorder, etc etc. I don't think I have ever come across a parent where they child was flagged as possible ASD, assessed, diagnosed, supported in school and provided with appropriate therapy and placement - with no parental involvement needed to secure any of that. It is just such a shame that it is just not seen for what it is. I suppose that questions of abuse or neglect have to be raised and answered. But going through that process as a parent/family is very very hard. Some children are misdiagnosed and some parents are wrongly accused and lose custody of their children. And having come to that conclusion it is so much harder to try to undo it all and get back onto the right track. It is a very hard system to navigate and I understand how so many just cannot do it. It should not be like that. All I would recommend to any family is that if they suspect autism spectrum disorder that they seek a referral to a multi disciplinary team that specialises in diagnosing ASD. Usually that is a specialist speech and language therapist, a Clinical Psychologist and a Developmental Paediatrician or Psychiatrist.

Thanks for the post and the important advice to ask what the background and specialism is of any professional you are referred to. My son has a diagnosis of ASD, and other diagnosis including OCD. The OCD side is causing us more problems than ASD, especially with school attendance etc. SS became involved and ruled that his OCD behaviours were due to our neglect. We also had MSBP mentioned, until school pointed out that my son admitted to doing certain things and that being ASD he would not have the ability to lie to try to protect family members. SS are now just about out of the picture. But their approach to how they assess and write reports is so bizarre and not the way a report would be written by medical staff, that I would seriously avoid getting them involved ever again. CAMHS are now on board. But again I am not sure what advice/support/therapy they will provide for his OCD. Especially since it is in school where he is not receiving the level of support he needs. At one point SS said that it may benefit our autistic son to be fostered out! And at his school they had a child psychotherapist who said he did not believe my son had OCD and that his behaviours were due to him not having a stable adult support system within the home. These opinions were totally the opposite of the advice we had from CAMHS Psychiatrist and Clinical Psychologists [both who had expertise in ASD and OCD]. Our child was put on child protection for nearly 2 years, with all the added stress that caused. We are still picking up the pieces of that.

You could look into sensory processing disorder. A woman called Olga Bogdashina has done a number of books/seminars about this subject. If your son is very precise about what he hears/sees, does that tie in with what he could have heard or seen? Or could it be things he has seen or heard earlier [hours days or months before], but is processing them much later and mixing them up?

Do you have something in mind?

No I don't, but wanted to reply so you didn't think your post was just floating around in the ether. My son has had various anxiety medication too. Some of them have caused him to have diahorrea. When we stopped the medication the bowel problems stopped. We are now trying fluxotine again. If tests have indicated an infection, then that needs to be identified and treated. If he is impacted and constipated isn't that contrary to Crohns? Medications can all have side effects. Is it possible to gradually wean him off them all and wait and see what he is like totally off medication? As well as having continual loose bowels, our son also practically stopped speaking and stopped doing things he liked. The change when we stopped medication was huge. BUT due to his anxiety and OCD we have started again on a low dose of fluxotine to see how he is. Could his fluctuation in eating etc be due to a sensory processing disorder? My son goes through phases of always seeming hungry, and then not appearing hungry at all.

I think you need to find an advocate. Then you need to find out what amount of money you could be receiving. Then you need advice from specialist accountany firm that deal with Tax issues and advice, and who have some understanding of the benefits system. As far as I understand it, any savings above a certain amount mean that you would cease to receive any benefits until your savings fall below a certain level. So you need to think about what you want to do with the money you could receive. Buying some propery, or investing it somewhere where it will NOT affect your benefits is what you are looking for. Otherwise the money you receive will slowly be eaten into until you are back to square one, with no money and seeking support again. Think carefully about whether to buy where you live. What is the accommodation like. What is the area like. Can you see yourself living there into old age ie. are there stairs you might not be able to manage etc. Is there a more modern type of property, maybe with a warden service, that would be more appropriate? As far as I know [which is not extensive]. Any money in a bank account is seen as 'earnings', so money over £8,000 savings may mean a stop of benefits until that money falls below £8,000. However the SAME amount of money in an ISA is not seen as 'earnings'. So you would continue to receive benefits UNTIL you cashed in that ISA and that money moved into your bank account. THEN the best way to use that money is to think about what you need or want to buy BEFORE you cash in the ISA. So that when you get the money from the ISA you spend it immediately on the things you need/want, so that it does not affect your benefits. Again, an accountant that specialises in tax issues is what you want. Especially if they have experience of working with disabled clients and/or those on benefits. So what you are aiming for is maybe to buy a property in your name? Then invest the rest so it is not seen as earnings. But be able to cash in that money in amounts that will not affect your benefits, or in larger amounts that you spend immediately so that it again does not affect your benefits. Hope the above is useful and easy to understand?? I also have Fibromyalgia, so I know how bad that can make you feel. Try to keep yourself as healthy as possible. Stress does not help. And try to get a good nights sleep and some exercise daily.

Hi and welcome. My son is 14 today and has an autistic spectrum disorder, dyslexia, dyspraxia, sensory processing disorder, anxiety disorder and more recently a further diagnosis of OCD. He was out of school for the whole of primary year 5. He now attends an independent special school [part of the SENAD group]. Your son is 15. You need to apply for an Education and Health Care Plan [the new form of Statements]. They go up to age 25 and must detail each and every educational and health need and MUST quantify and specify the provision, support, therapy and specialist teaching needed for each need. Have you looked at the Priory group independent schools for children with Aspergers? Why does your son say he does not want to go to school? Is it bullying. Is the teaching approaches not understandable to him. Are the constant changes of classroom, teachers and peer group overwhelming. If his current placement cannot accommodate him and meet all his needs, then look at somewhere like a Priory school. And ask them which college they feed their students into. Most independent schools are also boarding schools, which can sometimes be helpful with lifeskills and attendance. BUT it has to be in the right placement with the right support etc, otherwise boarding is more like a prison. It is difficult having a child that is out of school for whatever reason. It isolates the family and affects everyone. We are self employed and I cannot get into work because I have to drive him into school every day. My son is currently on a part time timetable from 11.00am onwards. We are trying to get therapy and support for his OCD, which is the main reason he is refusing school. He is simply too anxious and cannot cope with the OCD obsessions and compulsions. But getting a Statement is the first part of the journey.

What do the school say about if they think he will cope in mainstream college. Would the school support him staying and what would be their reasons for that. Do they have a college that they feed their pupils into and what kind of support package would a pupil get. Could that be provided at your choice of college. What is his level of support currently. What are the class sizes currently compared to the mainstream college. How would he cope with "self directed" learning [which is how most learning is now]. How would he cope with different classes and different teachers and different peer groups each lesson? I think you need the EHCP anyway. That requires a "re-assessment" and not just a re-write of the Statement. The EHCP should help identify the type of learning environment he needs post 16. At the college of your choice how many students do they have with Aspergers and how do they get funding for students with EHCP and the provision it details.

Nice to hear from you again. Can I ask why you don't want him to stay on at the Priory school until age 19? His Statement should cover whatever costs there are and the new form of Statement - EHCP - goes up to age 25.

Yes I agree with what you say. But the NC only applies up to end of secondary school. After that children can choose what they want to do. And there can be adaptations to the NC already. Some children do not do all of the subjects because they struggle with them and would not get any grade worth mentioning in them. Even for the most academic pupils, the NC is really just a nationwide framwork from which to judge abilities and skills. Most things learnt are not used again out of school. But the principles behind the learning usually are. I think it would be impossible for a mainstream secondary school to deliver the vast differences there would be if parents were able to choose what and how their children were taught. That is why there are different types of school. Because some children just do not thrive in a mainstream secondary. I have a very academically gifted daughter. And I have been to parents evenings when teachers have been very open about how good she is and have not mixed their words in saying that she needs to be in an environment with similar peers. One even said that those less capable were just bottoms on seats! They didn't know that I also have a child on the spectrum obviously. So "inclusion" as far as I can see is just a word, that is not really implemented or believed in. I do agree that those on the spectrum may need additional lessons and skills to be taught in those areas they do find difficult ie. social interaction etc. But I don't think a mainstream secondary can cover everything. My son does get the academic and social skills taught at his school. The only thing we miss is keeping in touch with local children that he knew in primary. But we had to make that choice years ago due to his anxiety and failure in school - and then total school refusal in primary year 5. In an ideal world, yes I would have liked him to remain at a local school. And for him to have received the teaching and therapy he needed. But it would not have happened. Or if it did happen it would have been threatened at every Annual Review as that provision is over and above what that type of school typically provides. Where he is placed now there is no fear every Annual Review, as he receives those things as part of their standard fees. And there is no way they could move him to another school as there is no evidence for it. And parents not knowing or caring what school does, can apply to any child. But it would say it would usually apply to maybe a parent that did not do well in school themselves. Or it could go the other way, and because they didn't do well, they take a greater interest to ensure that their child does do well. It maybe that at the higher end of the private school and paid fees that parents are less interested in the academic side, and just interested in the "name" of the school being on the CV for the connections and doors it opens?

How verbal was he before? Was he going to a mainstream or special school? Does he have any interests or hobbies? How long has he been on medication for depression? Is he better or worse on it? You can always work with the psychiatrist and slowly reduce his medication until he is not on anything to see if that makes any difference. My son has high Anxiety and OCD. He was on sertraline for a couple of years, and that actually made him depressed and he almost stopped talking. So we weaned him off it completely and now we are trying something else. The only other thing I would add is to stop doing things for him unless he communicates that he wants it. You can start with pictures to begin with eg. what would you like for dinner [two pictures or words], and he chooses what he wants [unless choice was something he also struggled with alot]. He also sounds like he has a severe sensory integration disorder, which was probably made much worse by experiences in school. Will or can your son leave the house for you to drive him somewhere? Or can the OT give you some OT equipment for him to use at home and do some sensory integration work with him at home? When he was talking did he give you any ideas of clues as to what he was struggling with? How long has he been like this at home?

Maybe an assessment by adult services might help as they could provide those services for help with daily living skills. If you don't want Adult Services to provide the service they are legally obliged to offer Direct Payments instead. Best to ask for as much as you can, as they always give you alot less. So maybe 4 hours a day to help with personal care, household chores, food preparation/cooking and shopping etc. Then see what they offer. They might also be able to help to rehouse you. Why the hold up with PIP?

And at the moment there is the NC, with children with SEN getting additional therapy, teaching etc added onto that, or differentiated for them. Imagine if every parent was submitting to school what they wanted the school to teach their child within each lesson or skill set. The number of permutations of what the parents could ask for would be mind boggling.

I hope your diagnosis is useful in getting you some support, some social life and an appropriate place to live [if your current place is not meeting your requirements]. All in all it sounds like a hard up hill struggle. But on the positive side you are doing it and getting some results. Do you get DLA or PIP? Due to diagnosis and health needs you could probably get money to buy in support so that they could take you somewhere for a beer - and hopefully the person taking you would be of an agreeable nature and someone you would like to have a beer with. It is a shame how people get isolated - for all kinds of reasons.

If the Statement says he needs a computer, then a professional must have given that recommendation. Which professional was it. Why was a computer recommended - for what need. What is the computer to be used for and what kind of software has been recommended? Are all or some of his lessons to be on the laptop. Really you should be getting answers to those questions and speaking with school and the professional that recommended it to come to a decision on what type of computer would be best.

I'm not sure how many weeks it is, but it is a number of weeks. Can you have a look on their website or phone them? It is also about identifying things that they can provide that your child needs. And you need to be specific and think carefully about what you are asking for as often the money you are awarded is for just that one purpose. For example we received a grant to get a new bed frame as my son had broken his. However, due to his OCD, he started obsessing about his mattress and would not sleep in his bed until he got a new one. In the end we mended his bedframe, and we could not use the grant for the bed frame towards a mattress. I did get a grant for a new tumble dryer as ours had broken and my sons OCD requires that his clothes are washed and dried every day. It was a huge help for us. What did you and the assessor identify as things your child needed.

I think it is quite difficult to put all the onus onto parents to state what they think their child needs. What I think we do need is an assessment process that is carried out by professionals that are not employed by the service providers. So many times, especially regarding NHS services [sALT, OT, CAHMS etc], they don't want to commit to anything because of 'funding issues'. So because they don't specify, the child's needs are not clearly identified and the provision needed to meet those needs is not quantified and specified. So how can a school deliver support or therapy for something they don't know the child even has, and don't have any specialism in. You cannot, for example, expect a school to put together a therapy programme for OCD because they are not clinical psychologists or psychiatrists. And neither could you expect a parent to be able to detail what the school would need to provide in terms of therapy or support for OCD. Under the new Education and Health Care Plans, Education and Health Care professionals are legally required to quantify and specify so that their findings and recommendations are included in the Statement so that educational and health needs can be met in the educational setting [as well as at home]. I think that once there is an accurate Statement for a child, then the parents should have some say over how the funds are used to meet those needs. But not for the parents to provide the only input on what their child needs. After all we are parents, not trained professionals in either the education or health sectors. My son is now nearly 14. Back when he was 3 I had no idea what the issues were, never mind what he needed. And over the years there have been more and more difficulties identified. If I were asked that question I think it would just overwhelm me because I just would not know where to begin. I would be able to help identify relevant targets as part of a SMART IEP. And would negotiate with school over what were the current priority issues.

And I think that Christmas is a time when anyone not living the "ideal" family life feels it hitting them harder than ever. It is good that you have some professional to talk these things over with. You do sound very low. Do you think you are depressed? Have you been able to grieve for your husband? Or have you just had to get on with things and now all those emotions are coming to the surface again? Is there any other way you can get out the house to meet people - hobbies etc? But I really think you need to stick to your guns with your son and your family. If you give it once it makes it harder to refuse the next time. And as you say, if they believe that using a certain tactic has worked, they will try to use it again. Have you ever confronted your mother/brother about the things they say about you and how that is not helpful and is affecting how your son behaves with you. It may not all be down to them anyway. How your son understands what is happening socially and emotionally could be affected by Aspergers as those are the types of difficulties typical of that diagnosis. But that does not mean you have to put up with abusive or violent behavior. What are the school suggesting could be done to get him into a better circle of friends? And what are they doing about his inappropriate behavior either in school or at home. I don't just mean about punishment. I mean about teaching him what is appropriate behavior and what is unacceptable. Christmas is often a difficult time for families. Those with children/adults on the spectrum can sometimes find it harder due to the change of routine, additional visitors or visiting, general christmas bustle everywhere, expectations etc.

I'm sure this is all very overwhelming for you. When you have a calm moment, can you write down a list of what you want to happen for yourself and your son. Prioritize them. Regarding Social Services, I think it is different now that your son is classed as an adult. When they are children Social Services often pull the "parenta responsibility" line as their reason for failing to provide any help or support. By saying the child is the parents responsibility [which obviously they are], that should not give Social Care the opt out clause, but it often does because parents are too tired and just don't know what they have to do to get support. Now he is an adult you are no longer 'required' to be his carer. You can if you wish. But you don't have to. So that may mean Social Care DO get involved to support him wherever that maybe. BUT prior to instigating that, I would recommend that you get some legal advice on being an Advocate for your son and on having a legal say in what happens to him. I'm not sure what the terminology is. That would protect you and your son against anyone else saying they were doing something in his interests, when you and/or your son wanted something different. I know there is a Power of Attorney. But I think you need the persons agreement to you having that Power of Attorney. But there is something else when the person is considered not capable of making decisions. Obviously your son can and cannot make decisions in his best interests due to the difficulties he has. I would find out legally how you would have Power of Attorney under those conditions, and what evidence the solicitor would need for that to happen. There are so many things going on in your case, and they need addressing one at a time. But it seems that things have come to a head recently, due to you not being able to seek carers allowance and your son not claiming PIP. There must be a way around this [he should get PIP, and you should claim CA as you are caring for him for the required number of hours]. Whether you want to be the only carer is up to you and your son. His PIP and Social Care could be funding for someone else to be working with him, thereby freeing you up to continue working. Afterall something needs to be put into place for when you are no longer around - which is something all families have to do when there is someone in the family with special needs. Once you have decided on what needs doing, that will help you focus on who [which organisations] could help you to achieve it. Hope you are feeling a bit better soon.

From your post I also notice OCD as well as the Aspergers. My son is diagnosed with an autistic spectrum disorder and also Obsessive Compulsive Disorder. This is a link to the OCD-UK website, explaining about OCD http://www.ocduk.org/understanding-ocd Many people think that OCD is just about obsessive cleaning. It isn't. My son has contamination OCD, which is basically fear of germs. There are also other aspects to his OCD [intrusive thoughts] and other obsessions, but his main one is about germs and contamination. So you would think he would want his bedroom clean and tidy. But no. The OCD obsession with my son [and alot of others] is that by attempting to 'clean' you will never clean it all away and so your cleaning actions actually 'spread' the contamination into other areas of his room, his possessions, his house, other people in the house etc. So peeing in a bottle then becomes logical. It is his way of trying to stop any germs he picked up in hospital from getting anywhere else. And remember that OCD is irrational. So it is not just about explaining it to the person. OCD is just like an abusive partner talking in their ear all their waking hours [and sometimes even in their dreams], telling them to do things to keep themselves and their loved ones safe. How do you get someone to get help when they don't want it? I would maybe start with the GP and ask for a referal to an adult service for clinical psychology or CAHMS that has experience of working with adults with Aspergers and OCD. The best place is The Maudsley hospital in London. They do have a unit that does specialise in both autistic spectrum disorder and OCD. Maybe you might find something on the OCD-UK website that you think he would be able to read?? He needs to understand and accept that he needs help. That is difficult. My son is 13 and he sometimes believes that his OCD is actually his friend and is helping to keep him and his family safe. But it is heartbreaking to see all the rituals he does [physical and mental], and how upset he can get and how it is limiting his ability to even get out the house. His OCD is also going to mean very black and white thinking. So someone needs to find a way to get your son to understand that people have "opinions", but they are not always right. So his dad might think his son does not have Aspergers [or OCD]. That does not mean he is right. There are professional people that have a much better idea and who can help. However, having said that any help is thin on the ground. Even if he does not accept his diagnosis of Aspergers, that is still a fact. Now, if he has OCD that would enable him access to benefits too - ie. carers allowance, DLA etc. Your son still wants you to be his main carers, without you getting the money to enable you to do this. Could you sit with your son and tell him that IF you need to be at home to help him that he must claim DLA etc? But you being at home 24/7 is also not going to help him. He needs professional help, and for them to give advice to your son and yourself on how to move forward. The only way to address OCD is to meet it head on and deal with the anxiety and stop doing the compulsions and reassurance seeking. That means you have to start with a hierarchy of fears and tackle the smallest and easiest first to ensure your son succeeds. Sounds easy, but it isn't. We are just getting to that stage now, and it has taken us years to get to where we are now.

I know this must be a great worry for you. Afterall you are his mum and you want what is best for Glen. Is there anything the home can tell you that Glen does and enjoys doing? If there is absolutely nothing, then I think it needs to be looked at - and I mean everything looked at. Could it be depression? Could it be medication? It is logical to say that someone would continue to do things they enjoyed doing. So what is stopping Glen? If these are all things he used to enjoy, then what possible reason could there be for his steady withdrawal from everything and everyone? When I mentioned a camera, I meant a hidden one. Hidden from Glen, but with the care staff installing it. So you can see what how he is spending his hours everyday. Because 24 hours of doing very little is worrying. Is there any particular care staff he dislikes? Is there any other resident he does not get on with? Has his medication been changed at all? I'm sure you've gone through all these thoughts yourself anyway. Can Glen communicate with you at all about his feelings?

I think you are right to bring the subject up. What is Glen doing all day long in his room with no stimulation at all? If it was my son I would be trying to get some activity happening. And if Social Services have been helpful, then I would push for them to be involved for their opinion too. As good as some care homes are, I think that there is always the temptation to take the 'easy' option for everyone involved. But is that in Glen's best interests? Although Glen caused that amount of damage, it appears that no-one really knows what the cause was and so they have made his room a low arousal area - maybe from a sensory point of view. Which is fine IF Glen is doing other things. But he isn't. Could Glen be depressed? Does he appear to be happy on his own in his room all day. It is possible to have a room camera set up to record what he is doing all day. Social Services did suggest this as something that might be helpful to us when our son went through a phase of damaging his room and cutting his hair etc. But in the end we did not use it as my son cottoned on to what it was and demanded it was removed as he wanted his "privacy". And those behaviours have stopped now anyway. But it maybe useful for you to view such a video. The home should be able to come up with something Glen can do - maybe just one thing a day to see how he reacts to that eg. a puzzle?

My son is the same. He is 14 and spends most of his time upstairs in his bedroom. And I completely understand the feeling of 'not even attempting to get him downstairs'. BUT I think we do still have to try because nobody gets to what they want and how they want ALL the time. I suppose it all depends on the functioning level of the child and whether there is any chance of achieving the goal compared to the complete stress and emotional turmoil of everyone during a holiday period??? Have you tried spending some time with him upstairs?? This year my daughter has had a puppy, so we have toilet training with newspaper everywhere. My son has contamination OCD as well as Autism, so having this new puppy in the house is a real challenge for him. I too would like my son to spend more time downstairs with the rest of the family. I've bought a tablet in the sales, and am hoping that he will 'agree' to play some of the games on it, with the provision that he does that downstairs. Fingers crossed.

I've not heard of anything either. Although I am a moderator, I don't have good computer skills, so I tend to give advice on the education forum [my area of interest], and seek other moderators help on other issues. Although I am also a moderator, we are not any kind of clique. I'm not in constant touch with other mods etc. I find the mods on this forum are very good and go to great length to explain anything they do. But it is still nice to see you again.....

I think you misread what I said canopus. I said that bullies can often identify children or adults with low confidence. That is why they bully them, because they feel they will get away with it. Someone with more confidence and more assertive would tell them to take a hike. As a child I was bullied by other girls. Not sure why. It was two separate occasions and two different girls. In the workplace I was bullied by a former boss. Those were horrible instances, but I came out the other end and I think I gained confidence enough so that now I just would not let anyone make me feel like that again.