florrie

I just found out some more info from ken, the doctor told jake he would end up in prison if he didn't go on anger management course, well i know that is dangerous for his particular difficulties he wouldn't understand what they were saying, has anyone else had this kind of attitude , it is a disability, he has extreme difficulties processing information, he is not a criminal. I don't know what to think it reminds me of the psychologist I saw for depression who told me asperger people ended up in prison, how is that helpful, they do not know what they are talking about, and made me feel more depressed.

Thanks for all kind and supportive messages it really helps there is good news and bad news, the good news is Jake has fgot a one bedroom flat for which I am extremely grateful, he still does not have benfits sorted though and not whether he is going to be able to cope but we can keep an eye on that. The bad new is the doctors appointment went extremely badly so badly in fact K won't even tell me the details because he doesn't want to talk about it was so awful, the only bit of info I could glean is that doctor refused to look at him and just talked non stop so that J couldn't follow anything he said, he was already stressed out about the appointment and we managed to get him down there by saying doctor would help him get somewhere to live. Jake has been with me last few days and has been ok if stressed no more violent incidents meltdowns i think people refer to them as, difficult to cope with when they are children but terrifying when they are 18, he was really relieved he was getting somewhere to live so I think that kept him in more stable frame of mind, although he doesn't really talk to me except to be rude but he can't help it, so it is very unfortunate the doctor appointment has gone wrong, he has referred him to cmht but i doubt we will be able to get J to go and to be honest my experience of them was that they don't have a clue, and that can make things worse which is usually what happens. W were lucky enough to have a brilliant psychologist and a paediatrician when he was young who really understood what asd are without being patronising. so not really sure what to do about that, but i am very grateful that he has got somewhere to live that is a first step. thanks everyone who has been understanding and supportive i can't tell you how much that means.

don't know if this is any interest to you but my son Jake one day suddenly out of blue when he was about 9 was watching his friend at school play some classical piece on piano, the child is question was considered gifted as his father and grandparent quite prominent musicians, and Jake watched and then played it perfectly he had memorised the piece presumably and we were quite struck so sent him for music lesson hoping that wuld be something he could pursue but that put him right off and he hated piano after that.

My son projectile vomited every feed when he was a baby until hew was a year old, my mother told me I I did the same and then it stopped at a year my nephew also did the same, none of this is very conclusive and probably not crohns ,but we have all been dx with asd, and although I haven't been officiallly dx i have food sensitivities which cause discomfort, which is why i am interested in this subject

There is some information on the NAS site on how to fill the dla forms to your advantage, I can't send links so if anyone else knows how to that, that would be helpful, the info can sometime be difficult to find.

also it occured to me after if you are having financial problems, I don't know whteher you are getting disability living allowance, which you should claim if you are not already doing so.

K en has sent urgent email to social services about the urgency of current situation because we need there input to make the housing work for J but there has been no reply yet and we need one by wednesday when he gets his interview for it.

Hi sue I'm really sorry you are having to go through this alone without more constructive support and advice do you know what is causing the melt down eg is she stressed by something she is unable to communicate, I don't know what else advice to give except my thoughts are with you.. My son's problem and agression i used to feel were caused by not being able to cope and being overloaded but its become more serious now so it is difficult to know.

I've been to gp and it was quite positive, didn't mention j to much but then she Isn't J gp, but she seemed to take situation seriously and was sympathetic, which for me makes a difference having been blamed for so long. Will report back after k has seen j gp. Thanks for all positive messages it really has made a difference and I don't feel so angry and alone

Thanks everyone, I will examine all those options in more detail, i remember ken telling me along time to punch a boxing bag ten times a day, i did that for a bit, i have got an anger manaement book, i didn't find it helpful at the time but i think i will revisit it sometimes you don't find things helpful but you find something helpful in them later, that happens a lot with me, as i make all these random connections and then something suddenly makes sense. probably lots of people have that actuallly. nellie i really relate to your husband being unable to speak and you not understanding why, it was probably a relief when you understood why, when i realised i may be asd ihad to revaluate everything that had occured in the past, and put a different take on everything, some of it was a relief. I'm not quite sure why i feel so strongly that they need to understand, the fact they go into defense mode really annoys me whereas if they just we are sorry this has caused you so much distress, and we will do what we can although the nhs may not be able to meet all these needs i'd be fine and grateful, they can't see something so simple

I do what you do lucas, I'm hyperlexic are you hyperlexic too? did you read early

Thank you nellie, your advice is really helpful and appreciated but i'm sure it is not true that you do not have the level of difficulties i have after all you have a husband with asperger too, who is there for you? at least i have ken to help me but honestly i would not have achieved what i have with assessments etc without him helping me, and j and i know i wuld not have achieved anything for jake without that m, this is what is really alraming.

Thanks for all the advice, nellie iknow you must have been through very difficult times it must have been terrible for your son to get to be 19, and you must have felt what a lot of wasted years and i really relate to that, although my son was dx at 10 it was all the other professionals who didn't get it and made life so difficult and i feel so much of it was preventable, which is what makes me feel so angry and that i've had to spend my entire life devoted to it. I can't help analyzing in the detail, I've always done that with things the only other alternative is to withdraw completely which was the only thing | could do at one stage, for my own sanity, i can only do one or the other there is no middle., although i will try to find a middle path I really feel so terrible as well for other parents on here that are struggling to get their child needs recognised and ifeel for the child and wonder they will end up like jake as a result of people failing to get it, and it makes me want to cry and scream with frustration for them. anyway i found all the advice helpful thank you, i will try not to blame them too much but they did fabricate my medical records for there own benefit , and my dwelling on that is obviously not helpful but not fully controllable

Thank you, actually funnily enough just writing that out seemed to help for the first time, thats a bit strange, I hope it lasts.

i'm visiting doctor tommorrow with K about my difficulties and k is visiting J doctor with j on wednesdayand things have gone so badly wrong for so long and my medical notes a so inaccurate that i want to try and make the picture clearer, but i tend to ramble and go off on tangents and we never get anywhere mind you k has been on my behalf and he never gets anywhere either but he does do better than me. I also have so much anger and also intense fear which has been repressed for so long it makes me really feel mentally unwell, and extremely depressed and a lot of it is felt about all these professionals that have been involved with my son and the continual misdx and patronising comments when every single person couldn't seem to get a grip with what they were being told until he was dx with semantic pragmatic disorder and a wonderful paediatrician knew exactly what it was and was extremly sympathetic she was even going to go into his school and sort everything out, but she left a year later when we needed it. I'm going off on tangent again ok back to the point I wondered whether anyone had some positive advice on being able to manage this anger because i can barely contain it and i know if iexpress it will come off badly for me you can't direct anger at someone and expect help anyway my new doctor is quite pleasAnt if not having any knowledge as usual of asd. it is also important that they don't think that all my problems are caused by jakes which is probably what will happen because they can't seem to get their round anything complex,even though I can explain but it will be rambly because i have difficulties independent of Jakes but Jakes obviously exacerbate mine and vice versa. I had lb tests done which i took of having i had no idea what they would say but Iknew they could dx hyperlexia and therefore i could use that to anyone who dx asd, and I had the most extreme profile of anyone they had ever had bearing in mind all the children already had dx of asd but there was one adult with similar profile to mine and he was professor of psychiatry, how interesting is that, thi s is all perfectly true by the way. When I realised i had hyperlexia about 10 years ago it was considered an asd but now there is some controversy about whether it is or not some people think it is and some don't and some say it can exist on its own and some say it can't. I did subsequently manage to get dx of asd privately but she had no understanding at all and was really patronising which made me feel worse, and I was also was told by a professor when i volunteered for research that they did not think I was on the spectrum but that i had something else but upon completion of there tests that i did because i was already there, i received a letter saying i did indeed fall into the spectrum and my conclusions had been correct. I have also had the ados test and found to be on asd via that test and yet I still have to put up with people telling me i seem fine, can't see what my communicatioin problemis etc I have probably had more in depth testing than anyone and dx 3 times it can't be wrong surely, but I still doubrt i'm on the spectrum and don't now feel the dx has benfited me because now i think people think i'm a hypochondriac and the medics definetly do. and I can't stop worrying about what people think it is doing my head in. I didn't invent the tests or the criteria and I though t I was taking responsibility for the situation by trying to address my probs so that i woudl have been better able to help j but no one seems to see that, I think they just think i'm self obsessed and selfish, and absorbed in my stuff and to a point that is true because i can't help it is part of how i process but I still started this to help me help j. I also have auditory processing probs which means i hear but i don't process until later so most of my responses are rote and i'm obviously so good at it no one can tell, I can't stop doing it I've tried but I can't it is automatic I suppose it is how I learnt to get by and it is always passive and ends conversation dead usually My other areas of interest now are the brain and the areas affected and how to improve functioning but thats another topic. i don't really know what to do about this anger and Iknow I can't express it and that is making me feel unwell and I don't feel i can tell the medics it is all the professionals and their lack of understanding incompetence and sheer inertia and inability to even find out what it is, to feel this I know they probably can't help not understanding any more than i can help the problems i've got but they continue to treat it in the same prejudiced way and it nearly drives me mad eg will not recognise the level of difficulties i have had, they still think i just think i've got asd, because i saw it on my notes but as I said didn't invent the tests or criteria, they just appear to be a law unto themselves and it makes me angry. I know Jake is the most important thing but the whole scenario has made me angry fearful and depressed, K feels i need to focus on my problems in this appt and J problems with his doctor on wednes with hisdoctor seperately otherwise mine will be brushed under the car[et, but i know j probs will be brought in but k is worried they will overshadow and they will make the mistake i'm only depressed because of j i'm depressed because of the continuous traumatic experiences of which they have been a part of, and each one leaves me feeling even less able to cope than before and i don't know why Back to the point has anyone any advice on how to direct this intense anger in apositive way, i know a lot of you will understand why feel so angry, but obviously they won't understand.

Well things have changed a little, k out of the blue nothing to do with current situation got a maybe offer of bedsit for j in town which is what we were trying for him last year, but it is not definite, they feel they have satisfy themselves that he can cope which is why he needs benefits and other support in place which we need to pursue for him. K made an appt with doctor who rang him instead and the arrangement is that J goes on wednesday, and then for interview for this bedsit, he doesn't know this yet, I haven't seen him since last episode, but he has a mobile that k has been keeping topped up, k says the gp is definetly more proactive than last one, and i've change my gp too, in the practice, so it looks more positive at present, and hope this is the turning point. will keep you posted on how things go, just hope j will go. Thanks all so much for you kindness and support and advice which I may not have pursued with k without it, because he didn't realise how serious it was. microsoft admin, I don't think the world hates you, but i know it can sometimes feel that way and its not very nice, but there are lots of nice people out there too.

Hi hayz, thanks for your story, i really feel for you and really related to it, Have you ever considered that your brother may have undx asd it just sounds familiar, and i'm certain that some people with undx asd or those that get inapproriate help meay develop more serious mental health problems, which is why it is so important that it is recognised by professionals, it is what happened to my father and is happening to my son and haappened to me also. I spent 10 years trying to get someone to acknowledge my sons difficulites stress levels, he was dx with aspergers but he had sever language delay didn't speak till 5 and i spent 4 hours a day developing straegies for him to speak but it was really sophisticated echolalia, which fooled everyone but me, i think now i did him harm by doing this, if i'd never bothered he may never have spoken. School was difficult for him and by the time he as 8 I was at the end o fmy tether and the head teacher who had apparently special needs training,( one day course I reckon) but i'd gone off privately and had tests done which showed he had language processing probs, when the lea were involve she didn't tell me abut any meetings about my child which i was supposed to attend so she could keep control of it i presume but i found aout via another parent, and I was livid , she did eventually resign because she was doing this to a lot of children, but it did contribute to my paranoia and lack of faith in anyone, helping you. YOur story sunds quite familair my father was dx with manic depression as teenager, ionly found out 2 years ago, but now I understand his violent psychotic behaviour which he is still in denial about, I've also had episodes long before i even knew what asd or even mental illness was, but it wasn't dx partly because i'm so good at masking for short periods which i've done all my life, my nephew was dx via a brain scan with autism and psychosis, but when she tried to get in wrting he wuldn't in case he got sued later on and also said he might go away as it sometimes does, she was livid, and has tried to pursue it but now everyone is saying he hasn't got autism, but they haven't done any proper assessment, and she can't seem to get one. My mother also had some weird problems she abused my adopted sister by gagging her at night depriving her of food, my mother believed my sister was from the devil and that god was telling her to do this she is catholic, but she was normal in every other respect and was and is fine with me, when I told someone theyasked whether my mum was schizophrenic, it had never occured to me because she struck me as the most normal one out of both my parents, my sister ran away from age 11 and eventually didn't come back from 14,lived with an old man in return for food, when the schoold invited psychologist in they said my sister was a liar and a fantasist, although I have to say if they had believed her and taken us all into care that would have been a night mare for me, and the man who ran the home got done for child abuse 20 years later. My mother was highly regarded professional in the field of education and ex royal ballet but she didn't believe dyslexia existed and when i went to help her once i had an affinity with children with difficulties and felt upset at the way they were treated, she was devoted to my father, so there was no way anyone was ever going to believe my sister. Any way the point of this i just hope i am not going to have spend years trying to get them to take jakes probs seriously again, because I haven't got the stamina for it now, and I think he will convince them their is nothing wrong and for short periods of time he is able to sustain this mask, he will probably blame it all on me, he will see the same people I saw who see me as a nuiscance because I went off and got my problem dx privately so that will suit them, i don't really care , but I just have no faith that they anyof our interest at heart at all. I don't know why all this keeps happening to me, i know it sound unbelievable to have it keep happening, I think it is partly to do with my own communication problems and all the detail that |I go into to try and explain rather than being able to summarize. I'm really hope that we are just going to be fobbed off yet again and J may be able to convince someone there is nothing wrong, because that seems the history of things inour family, and I don't think I have got the stamina to continue, and i'm also scared Imight blow a gaskit myself and do something I regret, the reason why i don't go to the docotr is because he chucked my private report across his desk like it was rubbish and said we can't accept this its not from us, I felt a mixture of intense fear and anger so severe i thought I could punch him of course i don't think I would but you never know, all i'm trying to do is get help for me and J and they make it impossible.

I have talked to k about today and he is making an emergency appt with a gp tommorrow but doesn't think they will section him as they need to see him, I think his depression has become so severe it has turned into psychosis, for want of a better word. I had something similar myself once about ten years ago, but i didn't know what it was then

I was on seroxat paroxeteine for a few years and i had terrible problems coming off them including hallucinations and anxiety that was even worse than before i went on them, I also had the probs you mentioned and it took a long time to adjust, the doctors told me to stay on them but I was determined to come off them and it took me a long and i weaned off much slower than they said i started by doing 1 tab one day and half the next for a month and then half a tab each day for a month and then half tab every other day and a quarter a tab every day until eventually i weaned myself off it took about 6 months, I can't advise you to do the same as that would be irresponsible as you may have have a bad reaction so discuss it with your doctor but slow withdrawal is the key.

Thank your for all the help and support and advice, well j stayed here last night thankfully, well he arrived about 3 in morning and got up around 12 and asked me take him to a friends only about 5 minutes a way well last time i took him I got lost and started panicking, because it was like a maze I culdn't find my way out of in the pitch dark, and he gave me directions but I have difficulties following thing auditory processing prob and he has difficulties articulating, and he went ballistic calling me every abusive name under the sun acccusing me of faking problems being thick and having abused him when he was younger and started smashing stuff and i thought he was going to attack me and I got really frightened and asked him to leave but he wouldn't although eventually he did much to my relief. He is clearly delusional now so I have decided that I think I agree that having him sectioned would be best because he is in such a distressed state of mind he may attack someone, but I haven't discussed it with K yet and Idon't know whether he will agree, he will decide the best cause of action to take there is no point me going to doctor without k they won't listen to me, they struck me off after a suicide attempt and told me k was abusing me when i first presented with difficulties, so it is a right mess and no one admits they made a mistake that s part of the problem with getting anyone to take any of this seriously. K has decided to let everyone who has been involved know he is homeless however and see what happens and I havve an appointment with my doctor on Monday which was made 2 weeks ago and only the 2nd in 6 years becasue of my fear of going back, but J no longer has the same doctor as me, his is k doctor.

Thank you for the advice, I will definititely follow through some if not all of this, some of it hadn't occured to me I need to take time to think through it I really appreciate the advice and support every one has taken time to give, it takes the edge off the acute pain I feel over the situation. Call me jaded yes there is a possibility he could be doing some drugs to self medicate, which obviously is not going to help things, but it is not responsible for his current behaviour, because he has always been like that, and I was always trying to understand what was causing his distress right from when he was baby and he had tantrums where he would scream for 2 hours until he fell asleep with exhaustiion, and there was nothing I could do to relieve his distress, my other son was so easy, i couldn't believe it, I've always tried to minimize anything that caused distress, but it got harder as he got older and that is one reason why I eventually broke down and was not able to cope with him , and i seemed to aggravate things. I definitely agree he needs more specialist help and medication to help his stress, so will try to follow those through, although K has contacted doctor and they just shrug shoulders and say if he won't go there is nothing they can do as he is 18, but they said that when he was 17 too. Anyway I will discuss it with K what to do next and will keep you posted.

my autistic son has been homeless for a week now and sleeping rough and starving due to another incident where my ex partner threw him out as he feels that he cannot cope with the behaviour, and his own home is at risk he was accused of dong something by neighbours in flat block which he denies (he doesn't lie) and he went ballistic and smashed the door slashed sheets carved swear words in the door and took computer card which cost 128 to replace, these episodes are regular occurences. I though he was staying with friends and I went to give him money, I'm on benefits and i am overdrawing to support him as he still is not receivng benefits although 18 now and I realised on questioning he had no recollection of any of this behaviour, and also that he is slleeping rough but is too proud to admit it he is in denial about any difficulties including autism which makes thing even more difficult. He came to my house because he was cold but had an outburst when I suggested ways of trying to help eg go to doctors and smashed my door too, i believe he may also have something similar to schizophrenia in addition, I 'v had similar problems myself in past but was undx, and i'm doing my best to cope. I can't get eanyone to take j or my difficulties seriously, I have had all my referal requests for myself and J blocked and I've resigned myself now to the fact that he isn't going to survive because no one cares and we live in a society where everyone just passes the buck, Ihav e written to everyone for advice but i can't seem to get anywhere, he has been let down by eduational people medical peole and social services, there is no understanding of autism or asd in devon and all social services resources go to the elderly there isn't even a psycholgy support service as you have in london, it seems that this is allowed to happen and i can't seem to do anything to prevent it which is what i've been trying to do this last year, I gave him some money but he blew the lot becasue he can't organise food or anything, and I think he may have used it to self medicate with alcohol, I also have difficulties organising my own food which every effort imaginable has gone into a routine i can cope with that works for me. I s there anything i can do if you suggest writing to anyone, i've probably already contacted them i've written to about 500 people in the last year bearing in mind I also have communication problems and people misinterpret me and pass me on to someone ele and we just end up back where we startedm, my ex partner has put a lot of work into this too and he has not been effective either. I s this really possible that people allow this to happen so he slips through the net completely, and is effectively allowed to starve to death. I feel bitter angry resentful and like a wound coil ready to explode, we have also had records manipulated and doctored in the past too so we have no comeback on anyone who has contributed to this state of affairs, so i feel paranoid too.

I completely agree with you, i think one of the difficulties that isn't being understood is that asd people have difficulty communicating or expressing empathy rather than having any, also my autistic son definetly has empathy, and so do I , in fact Ifeel i actually have too much empathy, where I feel others suffering so acutely like my son's or animals, homeless people, mentally ill people etc but not normally the sorts of thing that are considered by NTs to be important eg, s abroken relatiionship etc. I think autistic people have empathy toward things they relate too in particular, actually I can't help feeling that the professionals who say autistic people have no empathy are usually the ones that have no empathy toward the difficulties face by asds.

eating disorders obsessions and sensitivities to food seem to be part of asd, professor gillberg says osome kind of food obsession almost always occurs with asd, I had an eating disorder as a teenager that then became an obsession with healthy food when I became vegetarian because I didn't want to cause suffering to animals after seeing a documentary on TV. My interest iin healthy food is now my obsessional interest, and I have now doubt some would say it was an eating disorder, but it helps me, I also think that in my case and maybe others I have sensory problems and in the beginning i had no ability to regulate my food and would eat until ifelt sick because there was no appetite regulation and I learnt to control that with facts on nutritional content of food, and eating everything purely for vitamins mineral protein and other things and not pleasure, eating is not pleasurable for me, it is like the switch for appetite doesn't work and would also binge on anything with wheat in it at the time I didn't understand why, and feel so ill but I think it was probably a sensitivity and addiction to wheat.

Thank you for information, I'm surprised that they aren'tused more often, my nephew was told he didn't have asd because he has empathy, even though he has all the usual obsessive interests and routines, communication problems and difficult behaviour and i can see he has some cognitive problems, but no assessment of that kind was done, the cognitive tests also tell whether you have commmunication problems, well that was what i was told by my s ons' pyschologist 9 years ago who was did in deptth tests and was doing research at the time and said J would never have had the tests done normally on the nhs, and therefore at that time would not have been dx. All the experts who understand it inside out such asprofessor Gillberg etc seem to use cognitive tests as part of their understanding of asd.