florrie

Here are the websites www.nas.org.uk/ www.afasic.org.uk/speechlang2.htm

I'm very sorry to hear of all the stress you have been through, I went through something similar where I didn't know what was wrong withmy son, he had speech and language problems and was dx with semantic pragmatic disorder before being dx with asperger syndrome, they are all linked there is some information on national autistic society website,it is classed as an asd now and the symproms are similar. Do a search for info on the NAS site also aphasic have info when i find the sites I'll post them

I also just found out from a newsletter i receive from www.mercola.com that he was on seroxat UK ,paxil in the US, ssri antedepressant, as have other people who have done these massacres. I can't do the link to post it but I know all my suicide attempts were when i was on seroxat, as have others and increased agitation. of course i want to make clear here I didn't feel like hurting anyone else only myself, but some asd people have very bad reactions to these types of drugs and I don't think it should be ignored as a possible aggravator, of course it will be though

This is all part of a new phenomenon which says anyone who is a murderer has autism, it is media manipulation, I've read so many other cases similar, but it clearly isn't true otherwise murder rates would go up with the rising rates of autism which it hasn't

So sorry about the loss of your dog, I know I feel have felt acute pain at the loss of all my pet animals over the years when they passed away probably even greater in some cases than for the loss of human members, animals are just so loving and accepting and give great joy

If a person is wheat and dairy intolerant, it is extremely likely that the person will be soya intolerant as well, as it is third on the list of most likely food allergies so use soya with caution, alternatives are rice milk, quinoa milk, hemp milk etc that are usually tolerated by people with food intolerances. I think small amounts can be tolerated as in soya sauce, it depends how bad the allergy is, but is better to abstain completely in the begining

In my experience I had 3 gps tell lies on my medical records to protect their own tails after my suicide attempts, where i sustained some brain damage and had more difficulties with organising and memory afterward, 7 years ago, it caused me considerable trauma and was too afraid to go back so borrowed money and went privately for dx, which they just seem to pretend it doesn't exist and block all my referals to a professional who would understand and i feel there is nothing i can do about it i'm not sure if it is deliberate or if they really belleve mistakes are impossible as that may be what they are trained to do, they are like lemmings i think they feel there is protection is numbers becasue they are so afraid of being sued they will take any lengths to prevent it even if it means harming people as they won't admit to mistakes

I actually have a dx of AS and I regret it now due to predjudice that I am a loser which I didn't have before, I don't present typically so now I just look like a hypochondiriac instead to those who don't understand what it is,but at the time I didn't know what else to do as Ihad been struck doctors register after suicide attempt because i could not get my son the help i felt he needed, and I could not cope, also had a series of traumas occuring simulataneously ie losing home with massive debt at the same time as trying to get j difficulties recognised which took 10 years, and i felt if he got the help he needed, I'd be able to cope better with his difficulties and he also had a breakdown, I became obsessed with getting a dx because then I thought medical people would understand and listen to me, big mistake, it led to even more misunderstanding and predjucdice, when jake was also dx I though he would get the help he needed but he didn't it just led to predjdice that made things worse. I believe that if Jake and I had got the understanding and correct help I would not have got so ill with depression and fear. H eeventually ended up homeless and mentally ill and has never had any help although he is thankfully no longer homeless. He wants to work in building but cannot access appropriate support for him as he will not engage with people due to bad experiences from job centre, and really I can't blame him, he has had some jobs and done very well at them but gets overloaded and can't get to work on time etc and becomes stressed. He refuses to acknowledge label or any difficulties he has and believes any problems are too do with me and in a way I suppose he is right although I did what I believed was the best thing and couldn't cope myself I also believe my difficulties are treatable, I have a treatable auditory processing difficulty and obsessive compulsive personality ( the dx criteria according to gillberg is exactly the same for obsessive compulsive personality as for AS) which is worse under stress but is the only way I achieve things and in fact excelled at in the past as a makeup artist for magazines and theatre. My son however although also having asd was i believe brain damaged at birth with cord round neck dent in head and was not breathng, but my naievity didn't realise at the time, and it was not recorded or dx at all as i had not raised it due to naeivity and difficulties and communcating myself and had no idea it w ould cause the problems it did.

why do they want just males, I'm female, and this research study is in reserarch areas i have difficulties with, such as planning and organisation that is what affects my communication and what i want to communicate and I've taken part in other research that doesn't such as reading facial expressions and body language I'm actually quite good at that, but my social understanding is still in bottom 1%, females can present slightly differently to sterotype ie may learn to read facial expressions better, it doesn't mean to say there is no problem though, and things will never move forward if they are only reseaching males as the research results will be flawed if they don't include females.

It probablyis simple it is probably me making it seem more complicated with all the detail, I forgot to mention the parent Karen defelice is a scientist and all proceeds from book over production cost goes to charity, she has her own website, I still can't do links whichi s really annoying as i can't help people with the information directly, if you type enzymes for autism into search engine it should give you it.

HI KItty, I've taken digestive enzymes and with other things such as probiotics and following strict diet found it quite miraculous at the time, i've looked in detail at all the enzymes and must admit am still a bit confused, you need to get a high a dose as you can of most of the enzymes, ie lipase for fat protease for protein, that breakdown the foods, there is also a company in the Us that specialises in enzymes for asd, and may have other enzymes that do specific things but it didn't make any more sense to me and i didn't think they were any better than |I had found. There is a book called enzymes for autism, by Karen Defelice, you can find it on www.amazon.co.uk, this book goes into detail about the enzymes by a parent who has researched it,and www.kirkmanlabs.com. do supplements for autism, but i get mine from my local health shop as they are cheaper and good quality you may find them on the website www.greenlife.co.uk, also a favourite one of mine was vitalzym, really high dose but very expensive. I think getting the book would be a good idea

Don't worry bid you didn't make me feel uncomfortable thank you for your concern, I also don't wish to make people feel uncomfotable, because that makes me feel uncomfortable too because I know we all have different experiences and different things that help different people,

Thanks guys

I had no wish to imply that everyone who tries the diet would be "cured" of course not, i don't agree with that either simply that there is an improvement in all over well being including cognitive functioning, this has been an interest of mine for many years before i even knew I was on the spectrum and many non asd people get an improvement too. I know i have neurotranmitter problems as I was tested for them privately of course not on the nhs. I have no wish to upset anyone simply that is my experience and I am not the only one Donna Williams as well as many others,claims incredible improvements with dietary changes. There may be many different reasons for the symptoms of asd, and I am open to all of it. From my experience it is the nhs medical doctors I've seen that are the quacks, they have no understanding of asd in the adult field, it is better with children, and they just copy what the last person said on your records, and Uta Frith was extremely helpful to me in recognising that I was on the spectrum from intensive tests that were not done on the NHS, including ADOS because I didn't look autistic. I still believe some of my symptoms of asd come from severe receptive language processing difficulty and it is treatable but I can't get anyone to understand it apart from highly sophisticated speech and language pathologists not available on the nhs in this country. I have no wish to upset anyone and am certainly not saying this is the reason for everyone's asd, of course it isn't, I know that, simply that I believe it is some of the reasons for mine. In my son's case he definitley also sustained some brain damage at birth cord round the neck and dent in head where they tried to stop him being born due to cord, he wasn't breathing at birth, and he didn't develop normally, but because I didn't mention the dent in head at time, so it was never recorded, because I didn't think it was important, as I was very naive then, I just develped my own strategies with him, he was finally dx with AS at age 9 and I don't believe he as AS it is more cerebral damage with some autism, he played chess at 3 but had no speech. To be honest i haven't got the answer, I am just struggling my best to get through life. maybe I haven't got asd and it is the receptive language processing problem that is masking as it but my social understanding is also in the bottom 1 percent of the population, although i think my social skills are quite good, they are not obviously bad to others, I'm ususallyoverly polite to the point of being inappropriate, but no one minds that, and I can't picture complete on the tests. I do however have hyperlexia no doubt about that what so ever.

I agree with a lot of what he says, i've had gut problems and severe allergies all my life, and they are definitely improved by restricted diet and improving gut functioning, donna williams writes a lot about this, and says eliminating gluten cleared up her receptive processing difficulties, although i didn't experience this, i do feel generally better, as manyniutrtionist say gluten burns the gut lining, my son also went into a coma after mmr,and I think Andrew Wakefield is very courageous to risk his career to stand up and say something he believes in, of course not everyone asd may relate to this but there are so many people that get improvements, as well as many non asd people get improvements with allergies or brain functioning when they eat improved diets and elimate foods that they are either allergic or sensitive too. Also neurotransmitters are made in the gut and the gut and the brain originally come from the same cell when the embryo is developing, and Uta frith says in the sunday times last week that autism is caused by connectivity problems where different brainparts don't cooperate with eachother ie neruotranmitter problems, my functioning is much more reduced when eating certain foods.

Hi Bid, i have just had a similar experience, well similar in that they disagree with everything that you have to say, it is bizzare ihaven' read my report yet and I don't think they will be sending one despite knowing that I would like one so that i can correct any misinterpetations. i can' t help feelling angry and very distressed that this is going on so much The Neil can you let me know of who you of who you suggest in the specialism of asd

Thank you pumpkin pie, for your support, i do have my ex partner on side to a certain degree, so i gues s that is an advocate, i have tried to get an advocate via NAS and MIND and RETHINK and everywhere else i can think of some people don't even reply, although i am grateful for those that do mind being one of the best as well as NAS, RETHINK did not reply and I wrote twice, I Just go round and round in circles and end up where i started , I guess there is nothing ican do except try and understand why people or the system are like this, but thank you it means a lot that you responded to my post

I went to see the psychiatrist, last time was 7 years ago an they did not believe i had asd and i had been struck of gp list after suicide attempt, my suicide attempt was an acucumulation of misunderstandings and also trying to get my son the support he needed and he had a breakdown due to bullying and that was also ignored. I was also tryaing to come off seroxat at the time as I didn't feel it helped, any way 7 years later I have a dx of asd, a test of mixed receptive expressive language disorder, a letter from a famous professo acknowledging my difficulties, and that they are severe but masked,i have a really delayed processing problem and everything comes out jumbled and when i try ot organise it gets even more jumbled. although it makes sense to others it is never quite what i'm attempting to say and it makes me frustrated, and then i sound whingey when i feel i'm cracking up, I also have episodes that are bordering on some kind of borderlline psyhchosis state where the anxiety builds up and i go into melt down, and the last one lasted 7 weeks over christmas, my ex partner can't cope with it or helping me when like this so it is in my best interests not to get like this in order to keep that support, and i try my best by avoiding everything that causes anxiety I have 3 professors acknowledging my difficulties 2 agreed to see me on NHS but they were blocked, so I went to local mental health team, but he tried to exclude my ex partner from interview process when that has gone so wrong in the past, he said i was understanding perfect well and didn't have the comprehension of a 5 year old as i understood him, so i showed him a letter i have from a famous professor explaining this but he was just looking for reasons to discrdiet why i have an an asd, when i=he found out i liked animals he de=cided that definitely wasn't autistic, the fact that i had interests also meant i wasn't autistic, although they are obssessive interests, and i read 2000 text books a year i know an awful lot about a topic including asd, he didn't examine my mental health needs and wouldn't let Ken describe them, reccomended a higher dose of the Seroxat, when i had severe reactions to them in the past. He asked me if I felt miserable but I kind of went of on a tangent cos I;m scared to tell them because last time they struck me off I can't help feeling he may suggest in his report that ken is causing my anxiety, I sensed that was where he was coming from in order to exclude him from process, as all my dx and letters have come from Ken's intervention What is happening I feel as if I'm going mad, this is a kafkaesque nightmare to which there is no end,what can i do I feel that I am being stitched up, and i can't understand why, all i wanted was for my son to have difficulties dealt with and mine to be understood and the trauma i feel ican't describe. A professor who understand my difficulties agreed to see me on NHS but it was turned down due to funds, what can I do they are ignoring all the information they are given and it has taken 7 years to have to corage to go back. can I complain and who too, the problem is one gp said my suicde attempts were because i wanted to harm doctors, and i don't i just want these difficulties acknowledged

Thank you for the advice and support you have given me much appreciated, take care and good luck in the future.

Thanks for informaation, it was recomended for me and I'm an adult i don't think this therapy exists for adults, I believe it would have done my son a world of good though if he had been able to have this therapy when he was younger

I visited a specialist in ASD who recomended having sensory integration, what is this has anyone had it and did it help.

I have hyperlexia and I'm 43, the reason i know is that I read fluently at 2 reading age of 15 by the time i went to school. The defininition of hyperlexia is high ability with words but very poor comprehension, ie mine is of a 5 year old, I can't process a passage of material and answer simple questions on it(abstract concept) despite reading 2000 research texts a year. these difficulties can lead to asd symptoms such as echolalia, obsessive compulsive behaviours, including obsession with sameness,specific intense fears, remarkable rote memory and impaired social and communication difficulties. Psychiatist professor darold treffert is an expert in this area check www.wisconsinmedicalsociety.org/savant/hyperlexia (I don't know how to place the link so you can just click it on) for masses of detailed information, on 3 types of hyperlexia. if it is treated correctly the prognosis is apparently good for this group of people. Lindamood bell also do programmes to improve comprehension which research has shown reduces or eliminates asd symtpoms. I was tested there and had the most extreme profile they had ever tested. Donna Williams also says on page 61 in the The Jumbled Jigsaw, that by improving receptive language most of the autism goes with it I make loads of spelling mistakes and punctuation mistakes now however when attempting to communicate what I wish (but am aware of doing so)as my brain is racing so fast

Does anyone feel that neuroimaging would be helpful in identifying asd or other processing difficulties and has anyone had it done

asd kids often have sensory processing difficulties or extra sensory perception, ie tate smell sound etc which is a possiblity as to why the wind in the trees may be making him feel like this. if it is causing him distress then that is something to worry about, I relate to this kind of thing and sometimes wonder whether i' have some degree of psychosis or whether i might sound psychotic to someone else who doesn't perceive what I do. I've often wondered about the voices thing or whether it is just thoughts from innerself.

does anyone else feel that their asd symptoms ie obsessive compulsive behaviours intense fears, resistance to change, difficulties with interaction and social skills and remarkable memory are down to hyperlexia,ie early advanced reading skills ie I read fluently at 2 reading age of 15 when entering school at 4 but did not have comprehension of 15 years old and on recent tests have comprehension of 5 year old still, if this is improved can improve asd symtpoms My son was believed to have received cerebral damage at birth, cord round his neck and dent in his head where midwife tried to stop him being born with cord round neck but also has asd symtpoms, he had very delayed speech but could play chess at 3. probably from memorising check out wisconsinmedicalsociety hyperlexia and savant syndrome also covers other savant syndromes such as Kim Peek and others I can't do the links but is a fascinating website by darald treffert, he describes 3 different versions of hyperlexia one is just normal with no comprehension difficulties, one is hyperlexia poor comprension and asd symtpoms and is treatable, ( I believe I fit this category) and one is hyperlexia with autism