KathyM Report post Posted June 10, 2013 Hi everyone I'm here after 3 years break to get some advice on my middle son, Dan, who is now 16. Here are our previous threads: http://www.asd-forum.org.uk/forum/index.php?/topic/26188-new-and-not-sure-how-much-i-can-cope-with/#entry303224 http://www.asd-forum.org.uk/forum/index.php?/topic/26420-desperately-need-advice/#entry305469 We've always believed Dan is on the "lower end" of the spectrum, but have not been successful in our previous locality at getting him diagnosed, and for years we were told that we shouldn't push the issue as he would suffer for having a "label" and that all his behaviour was on the "outside edge" of normal for his age, until more recently. It's not that the signs weren't there, it is that he was passed around, which is a problem in many areas. CAMHS would say it was an EP issue, EP would say it wasn't in structured classroom time that he had problems but in unstructured times so he wasn't their problem either. Dan was born quite early (planned section) and as a result had collapsed lungs/respiratory distress syndrome and related issues, including ketotic hypoglycaemia, and repeated episodes of tachycardia and bradycardia throughout his childhood. The tachycardia has continued and is under investigation. These episodes can tie in with meltdowns and at first were written off as panic attacks until they saw his heart rate was over 140 and that sometimes they came on without obvious stressors. He was 6ft1" by 15 and is still growing, but is skinny and athletic. His metabolism is like a racehorse and he eats similar amounts to one lol. So that's his physical health done. Dan was a delayed speaker, never crawled (just got up and walked at 16 months), and had years of speech therapy. He had facial tics, scrunching his nose a lot. He would avoid eye contact and physical contact, and would bite and "freak out" when picked up or restrained in any way. He has tested as having extremely poor working memory, poor fine motor skills and at one point in primary school was diagnosed with dyslexia, which was then retracted in secondary school. He was on the gifted and talented register but also on School Action Plus for social issues and his reading/writing. Dan always struggled socially and only had one friend, who was similar in nature - reserved, on the outskirts, not very good at reading others' emotions and intentions (and both were prone to being bullied/exploited as a result). Dan started to get very stressed by school at around the age of 9, and started to run off as we walked home. He has not worn a coat in many years, even in the snow or peeing rain as he can't stand the feel of them. We once had to replace a brand new sofa as he couldn't bring himself to sit on it as he hated the feel. He has not learned to swim as the noise at swimming pools was too much for him. We learned not to take him to or throw him birthday parties as being around more people than just us would result in him taking himself off to his room and shutting off. He would hold in emotions until they got to boiling point and then take himself off somewhere and curl up in foetal position and not allow people near him (he would growl and rock). Dan collected bottle tops and lego men and would get very agitated and anxious if the men weren't in position on the windowsill of his room or if the bottle tops were not in his pillowcase - how he slept with them in there I have no clue. Fast forward to secondary school and the immediate problem was that although his IEP should have been continued, it was dropped. Dan found assertive and overtly masculine people (particularly adults/teachers) very frightening and would run away if told off by one. He was bullied but didn't really realise it - kids would tell him to do ridiculous things and he would do anything they said (including very dangerous things). The SEN at the secondary school was amazing and adamant that Dan had Asperger's or similar, but the school would not back her. Dan was "just a bad lad", this was an issue with many special needs kids at that school and most ended up leaving. Dan did act out in school and didn't make things easy for himself. The SEN would explain to his teachers that he had to be able to walk out at some points when he wasn't coping, but teachers would restrain him physically from doing so and he would panic like a trapped cat, and "kick off", empty threats and shouting that would get him in more bother and then he would run away (twice to another city!). We felt like we were walking on eggshells at home once he hit 13/14 and the hormones came in - he would see everything as totally black and white and it was a fine line between dealing with his issues and becoming doormats. He felt there was "no point" and was very low that he couldn't cope with school and with reading the intentions of other kids. I was the only one who could "talk him down" from outbursts and even then it didn't always work. He couldn't bear having his hair cut, and so began to refuse, using it to hide behind the longer it got (this is an ongoing issue) and flapping it when anxious. He would cover his face with his hand when talking and would struggle with eye contact. He wouldn't wear his prescription glasses as they felt "wrong" on his face. He still doesn't, despite having pretty severe impairment. He is sadly not able to have contacts. Dan started running away a LOT, in many cases to another city even. The police would be out hunting for him. Our relationship started to break down as I felt at the time that he'd "betrayed" me when I'd been his advocate. He would meet with strangers and started drinking. The manipulation by some serious dregs of humanity inside and outside of school escalated to dangerous proportions and his behaviour at school, attendance and trust disintegrated so much we had to move away. We knew getting him in mainstream school in the new area would be an issue and given our lack of help on the mental health side of things, the education department suggested we send him to a Pupil Referral Unit, not as a "bad kid" but because class sizes were small and they were aware of his needs. They were absolutely great and totally "got" him, meaning he improved vastly in school and out, but unfortunately he was assaulted by a student just outside the gates. He was so badly beaten the police said he couldn't return for his safety. So he had to go into one on one tutoring for half an hour a week in a library and his mood slipped again, although at this point he had matured beyond running away. He had no friends and started to go into the city with his older brother to meet new people, which was a well intended idea but didn't work out that way. His lack of awareness of risks got him into bother again when he brushed off his brother, accepted a drink off a "best friend" he'd only known for that afternoon, and was drugged with GHB, taken away by 3 strangers to a remote location and burned with lighters, beaten and left in a pond. As a result of this and obviously a culmination of the other assault and his social problems, Dan began to break down. He punched a phone box, breaking his hand, and had to have surgery to have pins in. He couldn't bear having a pot on and repeatedly removed it himself, having to have it redone three times and telling us all he wouldn't be able to keep it on as he couldn't bear it. He felt trapped by his new decision not to run away any more, and soon after surgery he fully broke down, locking himself in the bathroom after trashing things in the house, removing the cast again, and attempting to pull the pins out of his hand with his teeth as he couldn't bear them any longer. We had to hospitalise him, only over night, but finally got the attention of the medical and mental health community more than any of our repeated begging. Dan came home to involvement from social services, the emergency mental health team, Barnados and a local runaway charity called SCARPA. CAMHS promised they would see and assess him on the ward, but didn't, then promising an appointment within a week, which was cancelled by them after he got home. The emergency mental health team carried out a questionnaire as a first step in assessment for ASD as they felt it was blindingly obvious he had those sorts of issues. Dan got an appointment with the chief paeditrician of the local hospital who's special interest was teenage lads labelled as "bad" who might be "borderline" for certain conditions. He felt Dan has aspects of ASD and ADHD among other issues, but also felt it would be unlikely that he would get a diagnosis as he was functioning too well. He diagnosed him with reactive depression alongside these comments. Since then (last summer) Dan recovered well and gained a very small group of friends, also starting at the 14-16 provision at the local college under the oversight of the PRU he had attended. He had issues at first with attendance (mostly problems with room changes without notice which panicked Dan a lot, and the course being across 3 different campuses) but because the paediatrician put in writing that Dan had social issues, rigid and inflexible thinking, etc, he made leaps and bounds. The consultant also suggested things such as visual cues and timetables and the ability for Dan to be able to have five minutes out if he felt he needed it. He has had a slip in mood recently when he saw that he wasn't getting the qualifications others in mainstream school were getting. He has a tendency to obsess over certain topics for months on end, one was GCSEs and another was surrounding his strength and whether he would win a fight (both understandable but not appropriate in intensity or duration). I have avoided talking much about ASD with Dan as everyone kept saying not to label him. However, Dan himself feels he struggles to read other people socially and that he has issues he struggles with even when he is not low, such as crowded places, textures, making friends his own age, etc. He reflects emotion - that's my term for it but what I mean is that if anyone is angry or upset, he becomes agitated and fidgety even if he himself feels he has no reason to be that way (eg. when my other two children were being "told off"). He has only allowed my sister to cut his hair and even then it was once in 18 months. He still can't wear a coat. He struggles sharing a room (as many teens do I know) and can't have anyone touch his things. He is overtly clean for a teenage boy, washing his hair twice a day and being unable to go out without doing that, even if he's late to meet others. He flaps his hands in his face when talking to someone new or when nervous, and flicks his hair with his hands repeatedly when agitated even slightly. He fidgets a lot when anxious. He can get very righteous and angry over his black and white view of things, or be "blank" and uncooperative, but is controlling himself far more now. Last week we finally got his CAMHS appointment and they want to immediately assess him for ASD. I feel a bit sick about it as I was prepared for this years ago and half of me feels it's too little too late, the other half feels relieved. I worry about him growing up and not coping in college and the workplace though and he wants answers. I do too but not if it's me being "over protective" as the previous team suggested. They've said that regardless of the ASD assessment route, he will be getting workshops/therapies offered now. Whether or not I can get him to engage when he shuts himself off I don't know. I'm really sorry for the long post, I tried to cut it down. What I really need to know is whether this raises any ASD flags to any of you (I kindof think it will) and what the process is in the UK for assessing ASD at this late age - if anyone knows that is! On a side note, Dan's cousin (my identical twin's son) is in the process of getting his formal diagnosis of autism and they've warned my sister to expect a "more serious" sensory disorder diagnosis too, not sure if that's relevant. However, her son had more obvious signs and is still in primary school. Have things for Dan gone too far timewise for him to benefit from this route we are taking? Many thanks and sorry for War and Peace. Quote Share this post Link to post Share on other sites
trekster Report post Posted June 10, 2013 He definitely has signs of both sensory processing disorder and ASD. im surprised her wasn't diagnosed sooner. Have you tried emailing the NAS autism helpine? Contacting your local NAS group or going to your MP? Quote Share this post Link to post Share on other sites
KathyM Report post Posted June 10, 2013 There is an autism support group that meets at a local autism school that my sister brought me along to - I think it's run by the NAS but not sure. At this point I'm not sure there's anything the MP can do as we have an appointment with CAMHS to get the ball rolling next Friday. In Yorkshire that was a different kettle of fish, but I was told so often that I would be harming him by trying for diagnosis and I was so scared and mortified by his behaviour (police involvement, running away, etc, while being told that he was a "bad lad" all the time) that I started to believe that those that thought he was just a horrible teenager were maybe right. I questioned every part of my parenting as if it was all my fault, I still do to a degree. Reality was that CAMHS set "mental health workers" to task to keep the workload down and we were turned down 3 times for an appointment with the psychologist because the mental health worker said that all his symptoms were normal teenage behaviour. The hand flapping, the hair issue, the sofa, the coats, the behaviour, the running away and the restraint issues. All apparently normal. She never took his history either despite me telling her it - she implied I was over protective and the school implied further that because he didn't have a diagnosis I was making excuses for a "bad kid". Quote Share this post Link to post Share on other sites
KathyM Report post Posted June 20, 2013 Hi again everyone Dan had his ADOS test today. He seemed pretty, well, not upset, but affected by it. He said he feels an idiot because he didn't know how to "do the actions" for the picture story. When I asked him what the picture story was about, he said he had no clue, something to do with flying frogs. We joked that it was clearly a story warning about the dangers of drug use lol. He said for his item story he got a sponge, a cube, an umbrella, and a playing card. Not sure what the fifth was, he couldn't remember. His story was "Spongebob and Cube sat under an umbrella and played cards". We think it will go far as a children's story, youngsters would be amazed at the complexity and depth of the story. He said he told them about the things he doesn't like (noise, touch, etc) and he talked about his relationships. He said they asked him if he knew what a friend was, he tells me he can't remember what he said. I knew he would avoid this one as he suffered the horrendous consequences of trusting people as friends the first time he met them, and so doesn't like to think about that in him. Don't blame him. Anyway, I've sent him off to his college exam now and I am back home. We see his case worker tomorrow and were told they would score the ADOS and feed back to her for that appointment. Seems quick! I was wondering what the scoring system works like? Thanks Kathy Quote Share this post Link to post Share on other sites
nippy sweetie Report post Posted June 25, 2013 ADOS is a structured onservation and should only form part of an assessment. A full developmental history is also required as well as potentially some more "adult" assessments Quote Share this post Link to post Share on other sites
KathyM Report post Posted June 27, 2013 Yep I know. His full history has been given to them on numerous occasions and he had another questionaire type test when he was in hospital last year for his breakdown, that was specifically ASD diagnosis related. I'm not sure where I gave the impression that the ADOS was the be all and end all but if I did I apologise. Anyone got any further advice or do we carry on playing it by ear? Quote Share this post Link to post Share on other sites
Sally44 Report post Posted June 27, 2013 (edited) I feel angry for you that professionals, who would have known full and well that he was on the spectrum, have fobbed you off for years. And congratulations to you and your son that you seem to have kept some kind of sanity during what must have been absolutely horrendous times. He sounds like he is probably on the spectrum, and also has a Sensory processing Disorder. That would explain his reactions to things like touch, sound, smell, taste, texture and may also account for difficulties with balance and co-ordination [which may also cross over into problems with planning, sequencing both thoughts and movements]. You should have been told years ago that you could ask the Local Authority to assess him for a Statement. The LA may have refused to assess and you could have appealed that, and by what you have posted the experiences you were having etc, I am sure any SEND Panel would have agreed with you and ordered the LA to assess. I think it would be worth thinking about what to do next. What further education your son may want to pursue, and what support he would need to achieve that. Statements do continue for some further education, but not for things like university. I think it would be helpful for you to speak to IPSEA to find out whether it is worth you seeking a Statement [which will take 6 months from start to finish]. The SEN process will be changing over the next few years, so you need to know what you can do, and whether it is worth you doing it. But for your son to succeed, he really does need all his difficulties identifying so that he can be supported. He will have some real barriers to learning, such as the working and short term memory issues. What difficulties does he have which were diagnosed as dyslexia, and what happened to overturn that diagnosis? And in further/higher education, is your son going to be able to take notes in class? If he finds it hard to identify what are the salient points of a lesson, how will he know what he needs to write down? Edited June 27, 2013 by Sally44 Quote Share this post Link to post Share on other sites
nippy sweetie Report post Posted June 28, 2013 Sorry didnt mean to be nippy re the ADOS. I hope he will be given a full report with recommendations/ discussion re implications of diagnosis for future planning/ potential specific support needs etc. Good luck. Diagnosis should be a start rather than a final outcome but it must seem so for parents who have struggled to have their chlld`s needs assessed. I should say that I wouldnt call diagnosis at 16 a "late" assessment! Working in an adult diagnostic service its amazing the numbers of people not diagnosed in childhood. Quote Share this post Link to post Share on other sites
trekster Report post Posted June 28, 2013 ime when you're being blamed and punished for your autistic behaviour (and to an extent post diagnosis this still occurs) age 16 is late to be diagnosed. my mum refuses to accept or make allowances for any of my behaviour. my sister has made some changes to help me. Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 1, 2013 (edited) Hi everyone Thank you so much for the replies. I really, truly appreciate it! Sally44 - thank you so much for your advice. Unfortunately where we lived previously came under Bradford LEA and we were told they simply didn't statement any more at all due to financial reasons. He did get some input from the Learning Support Team from the LEA but statementing was something they just didn't do. I don't know if that's changed there now, but that's what we were told over and over again by them and other agencies like CAMHS, and the school. He did get an IEP of School Action Plus for many years, but once he hit secondary school that was not implemented any more (it was meant to be, another reason why we moved). The dyslexia diagnosis came from him having delayed reading and writing as well as working memory issues and back to front writing. He also had problems with black on white text. That diagnosis was given by the Learning Support Team, and was also written down as "specific word learning difficulties". Interestingly, the tests showed he had (at aged just under 8) the vocabulary of a 15+ year old (the scores didn't go higher in age than that, so essentially adult) and he couldn't do the "Draw a Man" test for love nor money. Noone ever "undiagnosed" him other than the EP saying he showed no signs of dyslexia when he assessed him (which was just an interview, no tests - they had been done by the SENCO in preparation and weren't included in the report). No idea how he came to that conclusion but the whole thing was a load of rubbish - he spoke with me at length on the phone saying he felt Dan was on the spectrum, and that he was particularly vulnerable with regards to being easily led by others. He also said he felt Dan used "rehearsed" answers and didn't really want to talk to him or give him any eye contact. Then in the report he said none of that, not one bit. He said Dan answered everything normally. I really don't know why, and it's something that makes me quite distrustful of the "system" in general. It was many weeks before I received the report though. Scribe wise, he was meant to get one for all his secondary school tests. When we enrolled him there, they promised him his own laptop so he could touch type (he was taught to do this at the away weeks due to his handwriting problems) all his work. They said he would get extra time in his tests. Then they went back on all of it saying he was just a bad kid and didn't need the support - the SENCO fought his corner but was basically told to back off. That school still haven't passed on his records to his new one, despite having been written to and telephoned by myself, the LEA and the school. It's nearly 2 years since he left! To top it off, when we moved, we told the old school our new address and phone number, and kept them up to speed with where we were at in finding him a new placement. They reported me to Bradford LEA inclusions team, who rang me on my new number (a Newcastle one) saying I had to provide proof we had moved as his school had reported me for purposefully taking him out of school and supposedly lying about moving. Luckily Bradford LEA realised the stupidity (I mean, how could we have a Newcastle number and still be living in West Yorkshire?!) and malicious intent and a complaint was lodged, the head was reprimanded for essentially harassing us. The problem with Dan and his future is that he wants to do everything and nothing. You can fight for what he wants for him to have arranged entirely different behind your back, or to not turn up. He wants change but can't cope with it. He wants routine but then doesn't concentrate. I'm not saying any of this is or isn't his "fault" but it's just how he is. I know this sounds awful to say considering how independent he is, but I can't see him ever being ready to leave home, much as he thinks he is. I don't want to think about that right now, but he keeps saying when he's 17 he wants a flat with his girlfriend. It makes me worry an awful lot as in some ways he grew up too fast and in most other ways he is not at his peers level, not that anyone's really ready for independence when they first want it! He wants part time work now, which normally I would encourage, but I am worried he won't cope and it will be another disappointment leading to another meltdown, or him getting in bother. To some extent he has to fight his own battles and I will let him try, but it doesn't make me worry any less knowing that. Dan's Maths teacher rang me this week. He had been asked to go to summer school but didn't want to go as his friends didn't want him to. She has asked him to go in tomorrow for an assessment to see if he can do the GCSE in September. She says he has real problems with concentration and remembering instructions, but his mental maths is "like a computer". I don't understand how, given his working memory problems but it is nice to hear! Whether I can get him there is another kettle of fish!!! Still no reply from CAMHS about when he's going back. Just when I'd started to trust them again, look what happens! A couple of appointments and we're getting cancelled on and ignored again. Thank you all again. ETA: I forgot to mention that last night he was beaten up again (he calls it a fight, I and witnesses aren't that sure of that!) when he stepped in to stop a stranger getting mugged. He is not badly injured and came home quite exhilerated but his brother witnessed it and said he was basically picked on and smacked about, pinned face down on the floor. While I know he believes he did the "right" thing, I am so worried about his safety when he's not assessing risks at all. Edited July 1, 2013 by KathyM Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 2, 2013 (edited) Being told by any LA that they don't do Statements is a lie. You can still ask them to assess for a Statement, and if they refuse you lodge an appeal to SEND, and SEND usually Orders the LA to assess. LAs do tell parents lies all the time. Because it saves them money. Why not lodge a complaint with the Local Governments Ombudsman about the LAs incorrect advice to you that you did not have the possibility for your son to be assessed for a Statement. Do you have what the LA said in writing? If you don't, I bet they say they never told you that. Over the years I have found that it is absolutely essential that you put in writing anything you are told verbally. So after the conversation with the EP, you could have sent in a letter saying something like "Further to our discussion on xx.xx.xx, you told me that you found my son had a specific learning difficulty with x, y and z; that he was vulnerable to being led astray by other children." Just put it all in a letter. If the EP denies it he has to put that in writing to you. And any SEND panel is really going to be thinking why would any parent make up these discussions. She must have been told these things, and then the LA/EP etc have done nothing. My son's first Statement said "xxxxx is likely to be dyslexic, and more professional input is needed to determine this." At his first Annual Review I asked he EP what input she had had to 'determine' if he had dyslexia. She firstly said that she had had no input with my son as his school had no concerns. Then she said categorically that he did not have dyslexia. I lodged a complaint with the Head of the EP service, and guess what, 3 months after stating he did not have dyslexia, she confirmed he did have dyslexia! Having a result on a subtest of age 15 for vocabularly is not unusual for children on the spectrum. My son's scores on standardised assessments ranged from <2 [where 3 is classed as severe], to 14 and 15, where 8-13 is classed as average. My son had a diagnosis of "severe/profound speech disorder". This was via an independent SALT. If your son could not draw the pencil man, it shows severe difficulties with imagination, organisation, planning, etc. He is basically future blind in all subjects and social interactions. His maths ability does not mean he does not have short term or working memory difficulties. Maths is very logical. If you can get the concepts of maths and can rote learn things ie. memorise them, then he could do well. The thing to watch is whether he will understand the language within maths, or the wording of the questions and what they want him to do. You can send a letter to Social Services asking them to come and carry out a Core Assessment of your son, and also to carry out an assessment of you as his carer. Social Services input, especially regarding his independence, and housing etc is going to be essential. You need him on SS radar as he is vulnerable - as proven by him getting beaten up. I would also advice that you put in a application for Disability Living Allowance, and also that you claim Carers Allowance. Get Citizens Advice to help you complete the DLA form. He should have extra time for exams. And he should have a scribe etc. And he should have been provided with all these things you were promised. Did you ever get any of this in writing? You need it all on paper. They have let him and you down. He is now about to take examinations and if he fails because of them that is negligence - although that is a hard one to prove. I don't know if he could take those examinations again later. But he needs the support/provision he needs to enable him to try to take these examinations. Have you spoken with IPSEA at all? Their website is www.ipsea.org.uk. You can book a telephone appointment to talk to them. If you have everything, or get everything in writing, in correspondence etc, then you can start to fight for these things to happen. They are just running rings around you because they know that you do not know what your [and your son's] rights are under SEN law. Until you stand up to them and challenge, complain etc about what they have done [or rather promised and then not done] nothing is going to change. I think you need some advice about how you want to proceed, and what you want your son to achieve, and then decide how to fight to ensure it happens. I suggest IPSEA and SOSSEN maybe able to give you some good advice. Edited July 7, 2013 by trekster Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 2, 2013 (edited) Just wanted to add that my LA said "We dont assess for Dyslexia". Again this is illegal. When I wrote to them asking them to confirm in writing that they did not assess for specific learning difficulties [which include Dyslexia and problems with short term and working memory], and to explain to me how his Statement could be a true reflection of his needs if they refused to assess and identify needs/difficulties he was obviously having, they suddenly did an about-turn and decided to asses, and then confirmed he did have dyslexia as well as severe difficulties with short term and working memory. On cognitive assessments he scored average on all categories except short term and working memory. My lodging a complaint with the LGO certainly helped with this. As did my knowledge of the SEN Code of Practice and knowledge of the Jim Rose report commissioned by the Government into Dyslexia. I even had some email correspondence with Jim Rose about his findings. The SEN Code of Practice even names a support for dyslexia could be "A specialist teacher". My son now gets specialist teaching for both literacy and numeracy by someone qualified to teach and assess children with dyslexia. My son also now attends an independent ASD specific school. And we recently managed to secure one night residential at his school, and am currently seeking for that to be increased to 2 days a week throughout the year [including school holidays]. I have managed all this by learning about the system. Learning SEN law. And being very methodical in every thing I was attempting to achieve. I always get everything in writing. I never believe what the LA tells me and always check it up. You can get results if you take this approach. If you start asking them in writing to confirm the bullxxxx they are telling you, they won't be able to because you could then lodge a complaint with the LGO and you could take things further and lodge a negligence claim. Because if you child has a specific learning difficulty, and those needs were not identified and were not met then his future prospects have been affected. Edited July 2, 2013 by Sally44 Quote Share this post Link to post Share on other sites
trekster Report post Posted July 7, 2013 By writing does this include email? If so would a bcc to the MP be in order considering how many times the OP has gone round in circles? Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 8, 2013 When we were having problems with our LA, I copied in our local MP. The MP contacted the LA and the LA wrote to the MP and assured them that they were doing all they could. Fast forward a couple of years, and after a FOI search I find that they were deliberately trying to frustrate the Statementing process. Had deliberately worded the Statement so that it was not legally binding. Had labelled me as a pushy mum who wants things her son does not need. And they did so much to try to ensure that there was no paper trail about what they were saying and doing - ie. by having meetings with no agenda, no minutes, no knowing what was agreed or what was supposed to happen. The LA lied to my MP. How they did this was the person in charge for overseeing my son's SEN provision passed the letter from the MP onto them [as someone who did not know anything that the 'inner circle' were doing to deny my son access to the provision he needed], and got them to respond to the MP. So they simply told the MP they were doing all they could as quickly as they could and that person had written that letter honestly from the knowledge they had, which was zero. So I don't find MPs can do anything. Much better to get everything in writing via letters or emails. Then when it does not happen lodge a complaint via the complaints person at the LA. And if still you get no satisfaction lodge a complaint with the LGO. My LA did also lie to the LGO. But what can you do? I did speak with the LGO and write to them about it. I found it unbelievable that the LA could respond to the complaint I had lodged by simply "assuring" the LGO that they had followed procedure, and the LGO believed them! I told them they were naive. In a subsequent complaint, where there response was time limited, the LGO did order the LA to pay me compensation. However they ordered the compensation to be for the 8 weeks it took from their decision to fund respite to them actually providing it. What they didn't do was to order compensation for the whole year they ignored my letter asking for a CAF whilst my son was out of school. Knowing what I do now, I would never wait that long, but we were in the middle of an Educational Tribunal at the time as well. So always get it in writing, always lodge a complaint with the LA and give them a timescale within which to respond ie. within 14 days - and then lodge a complaint with the LGO. They have more power on an LA than an MP. But also be very precise as to what your complaint it about. You have to itemise each different item as it may turn out to be a number of complaints rather than one big complaint about lots of little things that lead up to the current situation. Does that make sense. I'm in the middle of something at the moment. My son's residential overnight stay was reviewed by an independent body, and they recommended the Social Worker to assess to see if he needed two nights residential and for that to also cover school holidays. That was agreed and in the minutes of the meeting. I phoned the SW some 4 months later and they have not approached their boss yet about assessing for this second night. I will contact him again and give him a timescale, and then off to the LGO again if nothing transpires. Unfortunately that seems to be the only way. Everyone agrees he needs this funding. Everyone agrees he benefits and makes progress from it. Everyone agrees it is not acceptable for him to spend all his spare time in his bedroom - but that is what he does at home and no amount of pressure from me can change that. Everyone agrees that he should not be left on his own - but I work full time 70+ hours a week 6 days a week. There is nowhere to take him to, and no-one to come and sit with him. I do my best, but he is left on his own. I have told them that. They say he should not be left on his own. So they need to cover that need. I have to work to keep a roof over our heads. Quote Share this post Link to post Share on other sites
trekster Report post Posted July 8, 2013 hope they finally see sense asap. currently trying to find out whose the north Somerset asd social worker. I was diagnosed just after I left education and then my carers went round in circles trying to get me some provision. now ive finally worked out the education system a lot of services refuse me on grounds of age. im in ny early 30s and know how it feels to be passed around like a package whilst getting worse. hope the op manages to get some help for their child. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 8, 2013 Have you written to the Head of Adult Services. The Complaints person at your Local Authority should be able to tell you who you should write to - and again put a time limit into that letter for them to respond to you. In my case, some years ago I wrote to the Head of childrens services [but didn't have a name as I was told by SS that they didn't have a Head of Childrens Services!]. Anyway that letter was ignored. Then I got some advice that I should find out who I should write to via the Complaints person at the LA, and then send a letter with my request, and a timescale for it to be responded to. When I received no response I lodged a formal complaint with the LA Complaints person. They took up my complaint immediately and within 2 weeks I had a letter from SS apologising for not contacting me sooner and arranging for a SW to come and carry out a CAF for my son and a Carers Assessment for myself. I was totally surprised that this time it worked. But it was about writing to the right person with the right information in the letter and complaining to the right person if I did not get a response. Prior to that I had literally spent years where every few months I would phone SS and be passed from one department to another. I would be told my son did not fit their criteria [MLD], no-one every got back to me and nothing ever happened. I asked my son's previous school SENCO to carry out a CAF and she did nothing in over 2 years. She actually went on maternity leave TWICE and still she had done diddly squat. That is why time and time again it is about finding out how the system works and who you should contact and what you should tell them and how you should complain. When you follow the procedures I have found that often things happen. Quote Share this post Link to post Share on other sites
trekster Report post Posted July 9, 2013 I have tried them in the past and also the complaints manager. I used the NAS to help me and home help to word the letters. I even explained why the way they weren't helping me was incompatible with my autism and secondary affects on my home life at the time. Meetings were arranged but I wasn't given any extra time for the assessment even though his questions were incompatible with my autism and there was a booklet on the table saying how to assess ASD adults which I was going through at the time. i was given the fobbing off letter 'were doing our best' when clearly they weren't. Im told by my care agency that SS should be doing certain tasks and the opposite by SS, hard to work out who is responsible for what. I asked for a job description but when it arrived it wasn't in plain English and didn't include how a SS ends involvement with a client. Also I had to chase the job description even though I was told it would be written and waited a month. He got his boss to write the description in the end instead of himself and forwarded the answer to me. How do I know he didn't leave out parts from his boss? Is there any literature about 'how the care system works' and 'getting the best out your social worker'? Tempted to get a dummies guide. ive got a NAS adult care booklet so I guess I need to look at that and then challenge the BASW (organisation that co wrote the book). Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 10, 2013 (edited) Hi folks - sorry for the late reply, things have been hectic here. Thank you for your guidance too. Dan was on SS's radar due to his breakdown last year and involvement with the police. We had a family guidance officer and a social worker come out and do a CAF assessment but haven't seen or heard from them since last October as CAMHS had said they were taking over (and didn't). Do I need to do it again? Presumably yes? As for complaining - so far up here there's nothing to complain about, although I will remember to keep everything in writing as you suggested. Our LEA problems were in our old area and it's pointless rehashing it all now as I feel it will take energy away from what can be done now. College are happy to support him in any way should he get a diagnosis or not. Not sure how to go about statementing him now? What's the first step? Also I could really use some guidance on what to expect from this diagnosis process - I will try and get in touch with the people you mentioned too. We are back at CAMHS on Friday to see his PMHW. I rang again a couple of times last week as I still hadn't heard back about the appointment and got a call back on Friday as she said she had been meaning to text me but kept having other things come up. I asked if there was any news from the ADOS test and she said "Oh yes" but said she didn't want to go through it on the phone so would tell us on Friday. Given that he has had his history done, a big long questionaire while he was in hospital (by a initial response mental health worker to pass on to CAMHS, which they say they got) and now the ADOS, we don't know what is left of the diagnosis process? Thanks again for the replies, I have to dash out for a hospital appointment but will read them in more depth when I get back - sorry if I've not given enough attention to the ideas in your posts, especially if they answer any of my questions. I will catch up properly later xxx Edited July 10, 2013 by KathyM Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 11, 2013 You definately do get a report after a CAF. So it might never have happened. If you are in a new area you may want to get that process started asap. Ask CAHMS if they will do it - if they are good. From the diagnosis process you get a diagnosis and maybe some brief advice on the kind of support your child needs. And do specifically ask them for that advice. Once you have a diagnosis you can write to the Local Authority and ask for them to assess for a Statement. A Statement is a legally binding document and it would detail all the support/provision/therapy your child needs. It is legally binding on the LA ie. they have to provide what the Statement contains regardless of the cost. A Statement takes 26 weeks from start of requesting one to getting the finalised Statement. Your LA may refuse to assess for a Statement and you must appeal that decision as many LAs automatically refuse to assess to weed out those parents not prepared to appeal. Most appeals by parents are successful. Without a Statement your childl's school will probably have 'delegated funding' ie. funds given to them by the LA to support children with SEN. You need to know what your child is currently receiving from this fund, and what their total funding per child is. The SEN process is going to be changing over the next few years. Statements are going to go up to age 25, currently they go up to age 19 if the child is in school. I'm not sure about college etc, and how this will change with new legislation. But the government is trying to limit Statements to those children with the most severe needs. That does not mean your son would not warrant one. It means you will probably have to push hard to get one. But once you have one it should cover what his support needs are in school and as a young adult up to age 25. Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 11, 2013 Hi Sally. Again I can't thank you enough for the advice. We did get a copy of the CAF report although there was no real emphasis on his special needs and it was more focused on his safety and socialising. What I meant was that because things had calmed down and he wasn't trying to harm himself any more, social services stepped back. They said at the time there were too many people involved as they had involved Barnados (which didn't take off) and pushed at CAMHS. At that point CAMHS were promising an appointment within a week, then a month and then cancelled on us and said it would be no more than 3 months. The point at which SS stepped vack was when they gave us the appointment that was then cancelled, so they thought he was going to get seen. Also Dan had the involvement of the head paediatrician at the RVI so none of us thought he would fall through the net again. If CAMHS had been reliable at that point we wouldn't still be waiting now but we've had a verbal apology for that at least. Mind you he'd been on the waiting list since December 2011 so had already waited 10 months for that promise and by the time we got an appointment nearly 18 months. I will definitely push for statementing. My concern is what to do if we get old he's fine again. I am going to push tomorrow for a clear agenda of what to expect and when. There is a lot of stuff to fill them in on as Dan has opened up about a lot of things we didn't know about or didn't link in. For example we thought his 3 year long absolute refusal to wear glasses (he has strong sight probs) was down to image/embarrassment and he came to me yesterday saying he wanted me to know that he couldn't bear the feel of them. He did used to fidget with them all the time but he fidgets with his hand in his face with or without them. Thanks again Kathy Quote Share this post Link to post Share on other sites
trekster Report post Posted July 12, 2013 http://www.autism.org.uk/get-involved/campaign-for-change/learn-more/our-campaigns/past-campaigns/you-need-to-know/resources.aspx The above link is for resources concerning mental health needs of children and adolescents. http://www.autism.org.uk/get-involved/campaign-for-change/learn-more/our-campaigns/past-campaigns/make-school-make-sense/make-school-make-sense-campaign-successes.aspx 'Make school make sense' also theres a map of UK at the bottom right hand of the screen, click on it and do a search for services in your area. You might find social groups for your son, or parent support groups. Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 12, 2013 Thanks ever so much trekster. Thigs didn't go well today, he didn't score high enough on the ADOS and the PMHW said it was because he gave eye contact and could describe an emotion. No mention of his inability to make up a story or do actions. Still that could be because I wasn't being fed back to by the psych. I explained that he had been punished at his old school for "being rude" by not giving eye contact and she said if he was even on the mildest end of the spectrum he would be entirely incapable of overcoming any of the main issues like eye contact. She then went on to say he might have that old chestnut autistic tendencies but that he didn't need a diagnosis to get exactly the same level of help in his life as someone with one. I insisted on giving her Dan's list of issues and she said the ADOS might not mean he isn't autistic but again kids don't need a diagnosis. She said she will work with him alone and I've pushed for an appointment with the psych but the PMHW said she'd get back to me on that. I can't see it happening tbh, we've been here before. She also said something about her not being qualified when we asked for actual help for him but that she'd see him. Why aren't we getting help? Sge said they can just 'wait and see' well that's not good enough. We've done that for eight years. Quote Share this post Link to post Share on other sites
trekster Report post Posted July 12, 2013 (edited) Theres is evidence that some autistics can describe emotions or give eye contact, was his eye contact staring or inappropriate in any way that you can recall? Can he describe strong emotions such as anger. Her attitude is disgusting, it clearly states in the 'self advocacy booklet for adult on the Autism spectrum' that, 'some may develop strategies to hide their difficulties'. http://www.autism.org.uk/living-with-autism/adults-with-autism-or-asperger-syndrome/self-advocacy.aspx Also he could be looking down because the lighting above is hurting his eyes or because he's upset with the teacher. Autistic tendencies is just an excuse IMHO for avoiding giving a proper autism diagnosis. If he is struggling at school he needs a diagnosis she just doesn't wish to 'take responsibility' for identifying your sons needs. Whats a PMHW? Is she aware that after 8 years he is still struggling? Edited July 12, 2013 by trekster Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 15, 2013 Because you are requesting a Statement, you need to get all the things that have happened in the past in writing. Everyone who has been involved with your son should contribute towards the Statement. By law they should identify needs to go into part 2, and quantify and specify provision in terms of hours of support, staffing arrangements, professional involvement in terms of therapy/input in hours per term etc. So I would suggest you write to them all, and as part of that letter detail how he was supposed to be seen and supported by each department you are going to write to, and how all of them have failed to do anything. You need to start looking and thinking about what school he needs. Don't let on to the LA yet that you maybe looking at alternatives. But when you write to the EP you can ask them specifically what type of school he needs, what class size he needs to be able to access education, what learning environment he needs - also remember to ask that they assess his cognitive ability and emotional literacy using STANDARDISED ASSESSMENTS. And you do that with each and every professional within the LA, and NHS. You may well end up at an educational tribunal, but that is in the future. So just methodically work through the process of requesting the Statement, and making sure that you have in writing what you have requested each professional to do - because then they cannot say something like "we didn't carry out standardised assessments as there was no request/requirement to do so, but we did observe him in class." That is a cop out. It enables them to not identify real needs/difficulties because no assessment was carried out. So they cannot identify needs, and therefore cannot quantify and specify the provision needed to meet those needs. Believe me LAs are very good at dancing around issues - and as you've experienced yourself, appear to be going to do alot, and then nothing materialises. CAHMS is psychiatrists, who usually prescribe medication, and although that maybe something your son may need, he should also be seeing Clinical Psychology, a department/professional with experience of working with children with an ASD. And/or you find an independent ASD specific school for high functioning children where they also have a professional with clinical psychology background. For my son we saw Clinical Psychology [well they actually saw me, not him], for about 4 months. They say they are an 'acute service', so it is a limited number of appointments. So they did discharge my son. I did not agree to this, and put that in writing. They did diagnose him with an Anxiety Disorder and OCD. I pushed them to identify what his needs were, and they did that. I pushed them to say how much force I should use to get him into school [as I had the LA threatening me with the EWO], and they clarified that I was only to use gentle encouragement - because I also believe my son had a breakdown. And although they did not say specifically that mainstream was not the right place for him, they made a number of recommendations and suggestions that it was clear that mainstream was no longer feasible. So all that evidence went to the Tribunal and it helped us to win. Remember that if you end up at a Tribunal, the only information the SEND Panel will see is the reports and correspondence. Then there will be the expert witnesses that both the LA and you call to give evidence. So although you know it all and have it up in your head, the Panel cannot access that can they. So it has to be chronologically set out exactly what has happened from when you raised concerns at xx age to where your son is now. It is also very useful to keep a daily diary of what your son says and does. I kept one for about 4 months. I recorded every conversation he had with me about hating school, hating himself, wish he was dead, threatening to kill himself, every self harming incident, how he never went out the house and rarely left his bedroom, how he developed nervous tics such as coughing. I even made a secret video which showed how he was emotionally all over the place within a 24 hour period. When we went to tribunal the LA and his current school argued that I had exaggerated his difficulties and that they had no concerns. They made themselves look stupid. Because the CAHMS psychiatrist had detailed her conversation with him about his attempted suicide. She said she had never come across a boy as complex as my son. ClinPsych also detailed their involvement and further diagnoses. Plus he had refused school for about a year. So how could any school's response to that have been "we have no concerns". So I actually asked the SENCO at the Tribunal, "exactly what would my son have had to have done for you to have had any concerns?" She responded by saying that they had never experienced the things we were talking about. But that just proved that 'education' have no contact with the NHS because CAHMS and ClinPsych were very clear on what was going on. And there had been a number of incidents in school, plus he was refusing to go to school and vomitting whenever he went into school. Anyway, these are all the finer details that build up the bigger picture that you need to get in writing. Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 16, 2013 (edited) Hi Sally Thanks ever so much for all your help, you've really gone into massive depth and I really appreciate it. I am not keen on changing Dan's school now, he's at the 14-16 provision at the local college who are happy to have him back in September. So far that is the only place he would attend and I know he would leave education entirely if we hunted down a special school placement. There is an autism school near us but I would say it's for far more serious cases than Dan's, and the schools that have ASD specialisms are mainstream schools that I have been told by the LEA would refuse to have him due to his history of exclusions/truanting. So the college placement may not be ideal but he goes. He won't get decent qualifications there but he will attend and it is slowly repairing his beliefs about the system. We asked the LEA to put him in mainstream school and they said the schools feel he's too vulnerable, but then his placement is through the PRU service, which means he's with the "naughty" kids, which doesn't make sense to me. They put him in the Newcastle Bridges Project for a week when we first moved up and the headteacher was away - on return he questioned Dan as to why he was even there when he hasn't got a diagnosis and Dan felt very scared and tried to walk away and ended up getting chucked out (they told him for disrespecting the head by walking away, they told me because he hadn't been properly admitted through the right process) so you can see why I don't want to move him now he's settled as that had a big effect on him. My main issue is whether or not they will statement him while he's at this college placement, I have no clue where to start but I will try. Thanks ever so much xx Right, sorry to reply so quickly but I've just spoken to Newcastle Education SEN department and they say he's too old to statement and they won't statement him when he's in college anyway. They've said all he can get is support through Connexions, with something called a Section 139a. I have no clue what I'm doing here. Ehhh, sorry for yet another reply but I've just spoken to Connexions. Apparently they're only obliged to write Section 139a's for those who have had a formal statement. That said, they do have some discretionary powers and although they won't make any promises about writing one, they're going to arrange to meet Dan over the next week or so. I should get a call back in the next day or two. Edited July 16, 2013 by trekster Quote Share this post Link to post Share on other sites
trekster Report post Posted July 16, 2013 https://www.gov.uk/children-with-special-educational-needs/types-of-support http://www.parentpartnership.org.uk/about-us/ Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 16, 2013 Thanks again trekster. Well I've been busy today. Still waiting for a response from CAMHS, have rang and texted but noone has called back. Think it's going to be another 3 week plus wait, I'm going to have to get used to it. I suppose it's still better than the initial 18 month wait just to see someone. I have also phone Dan's consultant's secretary at the RVI, she is going to get his consultant to ring me either this afternoon or tomorrow afternoon. Also have spoken with Connexions who have already drafted a Section 139a form for the college with Dan's needs laid out, so that was a good call. Tried ringing NAS but kept getting cut off, haven't ever managed to get through to their helpline as each time I select to speak to an advisor the lines are too busy and eventually I get hung up on. Have emailed them instead as I can understand how busy they must be. Just trying to find local information on private diagnosis now. Not looking promising so far but that's just an internet search, perhaps the NAS will get back with more info. The thing is, we all know Dan has some form of special needs - our assumption so far has been ASD because it has been mentioned so much by teachers and he fit the bill to us at least. Of course the consultant says he ticks some of the boxes for ADHD and other things too. Clearly Dan has sensory issues that need addressing. Dan is getting more and more frustrated with CAMHS and I am worried he will switch off to them if they continue to push that he doesn't need diagnosing. I feel that if they don't think it's ASD then they need to decide what it bloomin' well IS. Dan's life is on the line at the end of the day, they can't just say "Well mum says she thinks it's ASD, we've tested for that and don't think it is, so that's it all done and dusted". They're the ones that should be able to pick up these "symptoms" and decide what he needs assessing FOR. My frustration is getting the better of me and it's so hard to hide it from Dan as I don't want him effected by how I feel about CAMHS as that wouldn't help at all. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 16, 2013 You can also try www.ipsea.org.uk - you can book a telephone appointment. SEN law is changing and Statements are going to cover children/adults up to age 25. Not sure when this is going to go through parliament [2014??]. So speak with IPSEA about it. I understand you not wanting to change placement if he appears somewhat settled, but it isnt the right place for him. He's just ended up there because you and your son have been passed from pillar to post. And whereve he has been placed have obviously not understood that his behaviour is due to his diagnosis ie. ASD and not due to emotional/behavoural issues relating to abuse or neglect. ASD is a totally different thing, and he also has the social interaction/communication difficulties that have also got him into trouble for being rude etc, when that was not what he intended. So look at IPSEA website, and contact them and decide how you want to proceed. If he is on the spectrum, he is a vulnerable adult, and if he has other co-morbid diagnosis such as ADHD etc, then he needs a Statement, and one that will take him up to age 25 so that he gets the support he needs up to, and maybe even beyond age 25. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 17, 2013 I don't get what they are saying about eye contact. The diagnostic criteria has a number of behaviours of which the child must have a certain number of them. Not every child will have severe problems with eye contact. My son can make eye contact, not brilliant at it, but he can do it - but he has enough of the other things in the criteria for him to get a diagnosis. Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 21, 2013 Hi Sally Thanks ever so much yet again for your support. It means a lot! I am not going to change his placement again. There are numerous reasons for it, the main one being that although he is in the year that means compulsory schooling lasts to 17, he is no longer deemed as a compulsory student to local schools. Schools were approached and asked for a placement and denied him it, saying he is too vulnerable for a mainstream school placement - this included schools with ASD specialist provision as he doesn't have a diagnosis of anything other than reactional depression. He is also more confident and settled at college. A change now would mean him disengaging again and he is not ready to come out of schooling. He doesn't need any more upheaval, he's had enough. They're offering him a foundation Maths and English course with Sports or Uniformed Services in September, which is a lower level than he's capable of, but he has to prove his attendance and until the last few months he hadn't been doing that. So he has to go through the lower levels. We may be able to swing him a GCSE Maths as part of that course but that's dependent on a few things, mostly how much he will participate and "tow the line". Dan doesn't have a diagnosis so of course they can't treat him as if he has one. that's not the college's fault, it's CAMHS's fault. That said, his tutors did say they would implement things for him that are relevant to those who ARE diagnosed, so on that side of things they have offered more than any other school placement has. No it's not perfect, but hopefully with the addition of the Section 139a which is done now (and looks brilliant), that will improve. I am waiting til tomorrow to discuss this further with his tutors. There's no point going further down the statement route - they simply don't do it for people in college or for those moving schools at his stage. They might get one in areas where they're not tightening the belts, I don't know, but up here it's just not going to happen so our efforts are best directed towards things we can get for him. The Section 139a is what's relevant to kids his age up here. As for the eye contact comments from the PMHW, I think she's just relaying a message badly. She said herself she's not qualified to go through it and was just passing on what the psychologist felt were the most important points to pass on. I totally agree with you on her personal views on it, but if we're brutally honest it doesn't matter what she says as she's said herself she's not qualified. It's frustrating and no doubt was an attempt to triage another borderline case from seeing the psychologist, but we'll get a better picture when we meet with the psychologist and at that point I feel we've got a better chance of being heard. Maybe I'm being rosetinted there but I do think we've got a better chance of talking them into more assessments if I can speak with her. Dan's had a tough weekend - but on a plus note he's been to a "real" hairdresser and had his hair cut. He asked to, and I took him, and he really didn't like it at all but is very pleased with the outcome and proud of himself for pushing that boundary. He pushed things a bit far by thinking he could "fix himself" and go back to his bedroom the same night - he managed one night and crept back downstairs last night. I've reassured him that it's not a failure and that he doesn't have to try all this alone, or at all if he's not ready. We're here for him and understand and that's the important thing. I don't think CAMHS realise what an effect they're having on the kids themselves when they're at an age where they are able to have a view on what they want from the process and are being turned away. Still, I'm very proud of him. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 22, 2013 Does he have alot of sensory issues too? If you can afford it you can have private independent assessments carried out. I've had to pay for Speech Therapist, Educational Psychologist and Occupational Therapist reports in the past - when we were going to tribunal. They can diagnose, and that maybe a way around things if you feel that CAHMS are frustrating things. I still think it is worth contacting IPSEA.org.uk. I know that you are saying he is past the Statementing stage, but if the new legislation goes through - and there is no reason to suspect it won't - then "Statements", or whatever they are called by then, will go up to age 25. The importance of that process is for your son to have detailed what all his needs are, and for him to be supported up to - and probably beyond age 25. My son is 12, but I am very aware of how he needs to be on the "radar" for professionals and services as he grows up. Do you think your son is definately on the spectrum? And if he is, what is delaying CAHMS or any other professional diagnosing? In our area you see a Speech Therapist, Educational and Clinical Psychologist and a Developmental Paediatrician. You only get involvement with CAHMS for medication due to difficulties associated with that diagnosis, ie. for my son it is Anxiety and OCD. If you want input that does not involve medication, then Clinical Psychology is the professional - however they usually only provide an 'acute' service and no long term input. If he is going to go to college, will he cope in the class sizes? Will he be able to take notes, and know what he needs to take notes on - as sometimes those on the spectrum cannot identify what the salient points are of lessons etc. If he would struggle with any of that he could have a scribe to write notes, have lessons printed out etc. Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 22, 2013 Hi Sally I don't know if I could afford private assessment but we did look into it and nowhere up here does it. It's something to look into in more depth but so far it doesn't look positive due to distance, funding and the potential lack of acceptance of private diagnosis. Do I think he's on the spectrum? I was 100% sure until they kept telling me all his issues are not bad enough to be it. They do backpedal and say that passing the ADOS doesn't mean he isn't on the spectrum. They keep going back and forth - he doesn't seem to have it then they call it autistic tendencies, then they say even if he has it a diagnosis isn't necessary. I kindof agree with his consultant that he ticks many boxes of many different things and perhaps not enough of each one to get a diagnosis. I don't know if this equates to PDD-NOS or whether it's a fob off and I'm questioning my own judgement. I just feel that whatever his issues fall under, he needs a proper recognition of them via diagnosis. When they say he isn't ticking enough boxes, it allows them to say an overall no, and that doesn't take into account the many boxes he DOES tick and the support he needs for them. If they don't think it's ASD, then it's time they said what they think it is instead of just writing it off. I rang CAMHS again this morning - surprise surprise they're now saying they sent out an appointment last week (for next Tuesday), which on Friday they had said hadn't been done. One story from one person and another from another, and no letter to prove it. Still at least we have an appointment now. I feel utterly sick about his appointment with the PMHW tomorrow as I feel in my gut that she will try to explain to him that he doesn't need diagnosis, knowing how easily swayed he is. They can be very persuasive. I also feel a bit targeted by her as my physical disability isn't relevant at all and yet she wanted me to spell it all out for her notes. Maybe I'm getting paranoid in my old age. Here the normal route for diagnosis is CAMHS and CAMHS only. He has the head paediatrician too but he says it's CAMHS that assess for ASD. I believe the psychologist responsible for his assessment at CAMHS is the lead clinical psych for them. As for the delay - it took them 18 months to even see him the first time (and 9 of those months were after his breakdown when they were meant to see him on the ward and didn't), I think they're just rubbish for that. The PMHW apologised for the length of time but put it down to having the wrong address for us, as we moved just before his breakdown. This was a poor excuse as they were told within a couple of days of the move and had it on his hospital records too. When I told her that, she said that they have to deal with a lot of emergency cases and they get priority - in which case why didn't he get that when he had a breakdown and harmed himself? I just don't think they're bothered. Class sizes are small on his course and have a support worker. Notes wise, none of the class were expected to take them last year, I questioned this at the time and they said it's all workbooks and in class work - he never got homework either. We've discussed it in preparation for this year. On his old IEP it was down that he needed a scribe and extra time in exams, but that will come under the Section 139a now. I think printouts of lessons would be ideal. It was discussed for his old IEP that he might benefit from the use of a laptop in lessons but it never came about at his old school as they didn't do anything off the IEPs - it was our major battle with them. Not one IEP review in over 2 years, but that's the past. He's not there now and that's what counts. I will definitely contact IPSEA to ensure I'm doing everything I can and to make sure I know what he's entitled to support wise. I am feeling more positive about it since Connexions sorted the Section 139a but the proof is in the pudding isn't it and we'll have to see if college fully implement it - I can't see them ignoring it as they did want to support him more. Thanks again Kathy xx Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 22, 2013 (edited) Private diagnosis are accepted. LAs may not accept them [not legal, but they sometimes say that], but an Educational Tribunal will accept them. And the Jim Rose report to the government even went so far as to say that any LA should have "sound reasons" for not accepting a diagnosis/assessments/reports from an independent professional, and to refuse to accept any advice about a child on the basis that it was given by a professional outside of the LA was not a good enough reason. Alot of what you are saying is what you have been told by the LA. It is not true. Yes independent reports are expensive, but if they allow you to achieve what your child needs, they can be cost effective. When we went to tribunal we borrowed money and paid for a private SALT, EP and OT report, and for them to also attend as expert witnesses. I represented myself and didn't pay for a solicitor. And we won. We won an independent placement that costs the LA £50K a year + transport + specialist Dyslexia teacher + one night stay over a week. It wasn't easy to achieve, but it is achieveable IF you learn about the system and the law and follow it and forget what the LA is telling you. Whatever their internal criteria etc are SEN law [ie. the law of the government] trumps that. For example so LAs tell parents they don't assess for Statements, and the parents believe them and go away. That is illegal. But if the parents don't challenge that via SEND, then the LA will not be forced to assess the child as they should by law. That is why LA's do what they do. It saves them money to fob parents off with lies. The Speech and Language Therapist and the Educational Psychologist we used were down south. It was a six hour round trip for each one. I did it because they were good and they could identify my sons needs and represent him at the Tribunal. Simple as that. I think it would be useful for professionals to detail in writing to you where he does and does not fit the criteria. To get a diagnosis a child has to have enough ticks in each section. I think regarding diagnosis that you need to explain to this professional that your son, at some point, is going to be out in the world and you will be dead and gone. Your son is a 'vulnerable' child, who will grow up into a 'vulnerable adult'. If he has no diagnosis, and is not known to anyone, he will not be on anyones radar and will receive no support or care in the community at all. How is that going to be meeting his needs? I don't know if a section 139a is legally binding in the same way that a Statement is. That is why Statements are so important because what they contain must be delivered, and if it isn't you can complain and use Judical Review for a Court to Order the LA to provide it. That is why, if Statements go up to age 25, they will be very important documents. So also ask IPSEA what you can do if the provision specified in a section 139a is not provided. And if there is a better way of getting his provision and support so that it is legally binding on the college/LA. If there is anything that is not done, ie regarding IEPs, you must complain in writing to the school/LA. And give a timescale for a reply. If that does not happen you lodge a formal complaint via the complaints person at the LA, and again give a timescale within which you must have responded in writing. And if that timescale passes, you then lodge a complaint with the Local Governments Ombudsman who can look at your complaint. All time consuming, but often it is only when parents follow these procedures, and the LA cotton on that the parents know what their rights are - and more importantly what their child's rights are - the LA will suddenly start to do what they should have done all along. I know that your son is now out of the secondary school provision, so it is worth asking IPSEA how it works with colleges etc, so that you know what his rights are in getting his needs provided for. Again, when talking to professionals, make it absolutely clear that if they do not identify what his difficulties are, and how they should be supported, then he is not going to get any support at college, or towards living independently etc because there will be nothing in writing saying what his difficulties/needs are. We recently won compensation via the LGO from our local authority for delays in organising overnight residential stays at his school. Again, we only won this because we followed the complaints procedure [once we had found out what that was!]. Edited July 22, 2013 by Sally44 Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 23, 2013 Sally I can't thank you enough for all your help. It's hard to express on a forum when it's not "real life" how much it means to us all. Dan had his PMHW appointment today. Even before he got there it had gone pearshaped - my sister was taking him (as I was at the hospital) but has an ASD son herself and because of a meltdown with him she was late to meet Dan. Still, he stuck around and they got there on time, only for the PMHW to have totally forgotten the appointment. They were nearly sent packing but my sister rang me and I confirmed it was definitely today at 11 and the PMHW admitted she'd forgotten (it was in her diary, I saw her write it in!). She had been about to leave but saw Dan anyway. I obviously wasn't in there with him and neither was my sister as she wanted him alone today. My sister tells me he kept coming out of the room for a "break" and to go to the loo, so he wasn't very settled. She said he was a bit agitated and not very focused. When I met them after, he couldn't tell me what had happened without prodding - and he found this really frustrating, so he wasn't just not wanting to tell me. In the end we worked out he had done two "huge" questionaires about "What's that word when you're meant to pay attention? God it's really hot, have you got some cash for a drink, but what's that word? Fat kid over there!" - so concentration I presume (couldn't help but laugh internally at his lack of it when going through what happened lol). So I presume it was some sort of ADHD questionaire. He did get what he wanted to say across - she asked him if he'd not be happier without a label and he made it clear that he wants to know what his issues are and if there's a name for it he wants to know and he wants his friends and family to know. She asked him how he would feel if there was nothing wrong and he tells me he said that he knows that he is different and can't see it being nothing, but if he didn't get a diagnosis he'd have to just get on with things. He said he told her that it's not like he wants to be different but he wants support and he needs to know because feeling different and people putting him off is making him low. Very proud of him. PMHW didn't tell my sister anything when they came out but said that the psychologist will explain what happened today and what's going on. I suspect they're turning towards ADHD now but who knows. I had never thought of it before because although he's always fidgety and has literally no concentration unless he's on COD, he's not running around non-stop. There are common aspects of ADHD and ASD that I didn't know ADHD shared if that makes sense. Maybe we're getting somewhere. At the end of the day it doesn't matter what label he gets as long as he gets answers and relevant support. In the meantime I'm worried to hear from Dan and his friends that he has been impulsively climbing buildings again - this time the old city walls and "Castle Keep". Makes me feel sick to my stomach but he's promised not to do that any more - in return I'm going to see about booking him in for climbing lessons if that is something that makes him feel good. I'll have to see if he will participate, I think he would under the right circumstances. This Thursday there's an open day at a local sports centre with a "do" for my husband's blind charity, Henshaws. They have the TA coming in with a climbing wall, so I am going to see if I can coax him up. Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 23, 2013 (edited) As your son says he needs/wants answers. And as you probably already recognise, and he probably does himself, he is going to need support into adulthood and maybe beyond with life skills, independence etc. It is VERY important that you get your concerns in writing to whomever he is seeing, because that is your only evidence that you have asked for assessments, diagnosis, details of what his difficulties are etc so that he can be supported. I really think that professionals talking about 'labels' is fobbing us off. If a child/adult has difficulties then they have those difficulties. By not giving them a 'label' you often deny them access to support. And I know what can happen with long term chronic stress and anxiety, because that is what my son went through - and probably so has yours. It has mental health implications. As the CAHMS psychiatrist said to me, "anyone, given the right circumstances and the right environment can develop a mental illness." And by denying our children/young adults the support they need, we are putting them into the environment to develop mental health issues. How is that helping them? And the long term effect is even more money will be needed to support them with mental health issues on top of what they are already trying to cope with. So hope you do get some answers, but again ALWAYS put things in writing. I really had to push professionals to get them to detail in paper what he needed. Infact on the day of our tribunal I got a letter through from Clinical Psychology confirming a diagnosis of an Anxiety Disorder/OCD. That took months of pushing to get - but was one of the main issues that swayed the SEND Panel because it proved that he was not coping, proved he had deteriorated and had not made progress and proved he was not mainstream material and proved that the school we wanted as the placement was the only one that could meet his needs. But I had to write to ClinPsych stating that BY LAW they had a duty of care to my son, and that the Statement MUST contain all his needs/diagnosis for it to be a true reflection of his needs, and that if they did not diagnose and detail what support/provision he required he would not get anything and the implications of that [as he had attempted suicide previously], could be a further attempt and that if that did happen I may have a case for negligence. We should not have to fight in this way to get the provision and support our children need, but often we do, and it is only those that do push that eventually get it. So do get things in writing. Anything verbal can be forgotten or denied. Have you also mentioned to CAHMS his risk taking behaviour? Edited July 24, 2013 by trekster Quote Share this post Link to post Share on other sites
KathyM Report post Posted July 24, 2013 Hi Sally, sorry for the dead short reply but we have a home visit today for the national citizen service trip that Dan is going on. His PMHW has just rung, he has scored "massively high" on ADHD screening and she's getting a psychiatrist's input now as well as the clinical psychologist. She's sending me a questionaire for us to do and bring along to our clinical psych meeting next week. Got to rush now but wanted to keep you up to date and thank you again xxx Quote Share this post Link to post Share on other sites
Sally44 Report post Posted July 24, 2013 Okay, sounds like things are starting to move. But if you also think he maybe on the spectrum, then they can assess for that as well. Typically they would need to assess speech and language and social communication - ie. things like does he take language literally, does he struggle to form friendships etc. Also does he have any sensory issues, being over or under sensitive to things, or fluctuating between the two. eg. over sensitive to smells, taste, touch, is his balance and co-ordination good - can he tie his shoe laces, ride a bike, brush his teeth. Is he overly fussy with food, does he need all his clothes labels removing etc. And does he have any repetitive behaviours, or need structure, or get upset at changes to plans. Can he move from doing one thing to another easily eg. turn off the TV to go out the house etc. Quote Share this post Link to post Share on other sites
KathyM Report post Posted December 31, 2013 Hi folks Sorry it's been so long since I last replied, we were in this in between place where we were being told it was all ADHD and he was going to need a formal diagnosis of it and urgent medication before starting back at college, then that never happened. Then his PMHW was put on desk work and he still hasn't met his new one (old one left in September). Dan's college life has pretty much fallen apart as without a diagnosis his needs are not being recognised by the teachers, some of whom have personal dislike for Dan now due to his outbursts and me finding out they were lying to me. Last meeting was just before the holidays and CAMHS came as well as Connexions, both were great and pushed for him to get his needs recognised. His progression coach (one of the lying teachers) kept completely disregarding everything I or they said, saying "All teenage boys have meltdowns", "All teenage boys are distracted", "He's not noise sensitive when he's quite happy to shout, now is he?" and really was being just a pain in the backside. CAMHS kept saying they were on the path to diagnosing and college basically said if he didn't come back with a diagnosis by January we "might want to look for somewhere else for him". When Connexions kept saying there are no other options for him, and Learning Support at the college asked why he was not being put forward for qualifications that he was meant to get this year, course staff kept saying "Wait and see if something else comes up for him somewhere else", as if that's what a good parent would do. I was foaming and so were CAMHS and Connexions in the end. I don't want him left with nothing (and because they weren't putting him forward for Level 1 English, there were no other options available) and I don't want them to win, but I can't help but feel sending him back. He wants to be there though and it's his choice. His only choice really. CAMHS went away from the meeting saying they would pull things together quicker for him, but things started to get cancelled here and there again so I spoke with the practice manager (the one the last PMHW said didn't exist as they didn't have them?!). Dan got a "working diagnosis" two days later of autism. It's now formal. They think he has SPD too (his sound sensitivity is apparently ridiculously high, hence him not being able to concentrate) but can't assess or diagnose there as the only OT qualified to carry out that assessment has left and whoever's in charge of budgets is not allowing them to train up another. They're going to treat him the same as they would a diagnosed SPD case though. On top of that, it's likely he has post traumatic stress from the assaults, so we have a lot of work to do. Bearing all that in mind, CAMHS will not be taking him further than diagnosis other than if OT have some specific work to do with him (which is likely but only a little on recognising emotions which ties in with anger management). They do not offer advice on how to do a sensory diet, but say he needs me to do it due to them not being able to do an in depth assessment of his sensory needs. They said they will sort out book recommendations if they remember any but after the little bit of OT input we'll be on our own. Now I'm hunting for solid advice on how to deal with his issues without even having a sensory profile done on him! I'll have to work it out for myself so if anyone can help me, I'd really appreciate it. Thanks, and Happy New Year! Kathy xx Quote Share this post Link to post Share on other sites
Sally44 Report post Posted January 1, 2014 whereabouts in the UK are you? Have you approached independent ASD specific schools and asked them what college they feed into. My son currently goes to one of the SENAD schools. If he goes onto college the SENAD group work with the college, and if he needed it he would have a one to one, and that person could be employed/trained through SENAD, as they have employees who work in the community as well as within the school/college setting. I don't see how your son can continue mainstream, when he is not receiving the support he needs to succeed. The NHS does not provide any therapy for sensory processing disorder. Independent special schools for ASD usually have OT's employed on site. They are qualified to deliver the therapy. It sounds like he also has dyspraxia, and I don't know who you get 'undiagnosed' for dyslexia. I would advise that you contact www.ipsea.org.uk to find out what you can do regarding support etc now that he is post 16 and does not have a Statement. Quote Share this post Link to post Share on other sites
KathyM Report post Posted January 3, 2014 We are in Newcastle. There are two secondary schools with autism specialist "ARCs" but Dan would not be able to go to either school, and even if he could he would not get an ARC placement so would be landed in normal classes (which in these two schools are far higher class numbers than he has currently). There is one specific school solely for ASD kids but that is for more severe cases. There is only this college locally and Dan would not get transport help to get to others even if they did take him (and they won't for sports courses without his level 1 English anyway). As for him not being able to stay at his current college, well he wasn't getting support because he didn't have a diagnosis, now he does but that happened after he broke up so we'll have to see. As I've said before you can't get a statement in college, statements are replaced with Section 139as for college students everywhere and therefore statementing for kids who don't have one will not happen in ANY college. Dan had a basic Section 139a which was not specific to his individual needs but now he has a diagnosis and once the OT report comes through, it will go into more depth. Dan would not function in a school environment, it has been tried more than once and it was not the right environment for him. Connexions are looking into other options but have said not to hold our breath as it's unlikely there will be any other than signing on. I agree on the Dyslexia diagnosis, so do the college but their "powers that be" require a new assessment and diagnosis every two years to qualify for support. This should've come up well before now of course! Quote Share this post Link to post Share on other sites
