florrie

I have a dx of asd and hyperlexia and I had to go privately to get it though, my son was dx with aspergers when he was 9 but I think ihe is autistic or high functioning autistic as he didn't speak until 5 and I thought it was aspergers when there was not a speech delay, and autism or high functioning autism when it was, there is no one to see who understands any of it where I live so it doesn't really matter

Sue, what is his new book called I know he has several, I would really like to try the supplements he does, although I can't afford it at present, as I'm terrified of conventional medications, after suicide attempts when I was on seroxat and know it was linked by messing up all the other neurotransmitters , and don't like the idea of all those chemicals doing god knows what but the idea of natural supplement supporting your brain to function better appeals to me more even though they can sometimes have adverse affects too.

Good point Hailey thanks for that, although I read all this stuff I'm so chock a block of info that is all jumbled up, that |I forgot that very important point about right brain stuff and doing things that stimulate that such as music or art or maybe just having fun, heaven forbid, I can't remember when that last was it is a distant memory but it must be possible.

Thanks for info hailey, and for taking the time to post that info, I will llook in more depth at stuff you reccommended because anything that improves thing is great , and there are several things out there that help, LIndammodd bell offer learning programmes to improve processing of information, but I already do some of what you suggested anyway for years, my hyperlexia is how I get by if I didn't have that I don't think I would be able to function, althoughmaybe other neural pathways would have developed anyway i don't know, my narrow interests mean that when I read on something interested in it automatically goes to long term memory, if I read on something i'm not interested in Ihave no ability to recall anything,even a sentence for a 5 year old level, this problem does give me probs in having converstaions with people following telephone converstation etc, but when I read on something I'm interested in it is completely different , I have a photographic memory for the detail, most material I'm interested in is by professors of one discipline or another, whether animal behaviour, neuroscience, or learning processes, I still have probs probably taking in the whole of something., but I usually get there eventually, it just takes longer . I have difficulties making use of the skills I have in a productive way I had a reading age of 15 when I was 2 and it is that that ability that masked my other probs, but I don't feel hyperlexia is my problem but the other problems that go with it, I need routines and narrow interests in order to make sense of things and function, and without that, that is what causes the chaos and of course trying to cope with getting the support that my own autistic son needed is what pushed me over the edge, and maybe did him just as much harm, but I didn't know what Iknow now at the time.

Thanks for info Hailey, I agree with where you are coming from, I find a lot of these books really helpful too, Louise Hay was the first i read you can heal your life and it was recommended to me, about 10 years ago, at the time i before my son's dx and everything was a nightmare and to be honest I was not well at all at that point, and I tired really hard with the book but it just did not work and I just felt a failure because of it , however since then I have discovered loads of really lovely books that are really helpful, at present Ilike messages from your angels by Doreen virtue and funnily enough I was feeling really down and hoped for and inspiring message and just opened the book on a page and it opened on dolphins, and the next day i picked up a magzine all about swimming with dolphins and how most people who intereact with dolphins have life changing experiences. Another time a year or so ago i opened the book for a message when I felt suicidal and it opened on suicide, it i didn't put me off but it made me cry because it was so sensitive, I kid not, there is something in this for sure unless it is just a coincidence

I have to say whilst I like the spiritual postitve aproach, counselling didn't work for me and made me even worsethan I was by saying my probs were my fault at the time we had lost our home my son was an undx autistic and it late turned out but I didn't know at the time that I was also asd with auditory processing probs and mixed receptive expressive language disorder, and wasn't able to critically think through the probs to discuss so they were misinterpreted, I have felt so desperate and difficulties in coping because of physiological information processing problems, but I believe there is notother way but to go forward as positively as one can, and we will all find different things to help us, none of us will be the same. Some people may find counselling helpful if it is by someone who understand asd, I find dietary stuff organic and vegan and my interest in neuroscience and learning processes one of the ways and my connection with other people that have similar interests. I absolutely loathe Louise Hay, although I understand the bit where she is coming from when she says we must take responsibilityfor our own lives but it isn't that simple if you have an asd and a child with it and can't cope very well or get it recognised, the UK in my opinion is appalling for not dx and delay indx etc and a friend of mine who was a counsellor told a woman who was severely depressed to read louise hay and the woman read it and felt everything and her abusive childhood was her fault and she nearly attempted suicide. I still think your stuff is great haily and appreciate where you are coming from, as I have found spiritual stuff not "hippy stuff" a comfort ,and think you are inspirational to have found a way to cope with probs but see the other side too, all of it needs to be taken into consideration I have read most of the books you recommend, some of them are temporarily helpful, as I'm hyperlexia I started with reading learning procesess etc years ago went on to psychiatric text books when unwell which were the most unhelpful of all, books on autism and asd tohelp myson and realised I probably had it myself, then self help books and then followed raw food vegan diet and spiritual books, the ones Ilike best so far are conversation's with God by Neale Donald Walsch angel books by doreen virtue ex clinical psychologist the celestine prophecy by james redfield Autism and Asperger books by tony attwood pat howling and professor gillberg The Indigo Children by Lee Carroll and jan tober clinical psychologists with a different way of looking at add children saying the new kids have arrived and they are here to teach the world lessons really positve could also apply to asd children I love this book, Sunfood Success System David Wolfe Spiritual nutrition by Gabriel Cousens Animals in translation Using the mysteries of autism to decode animal behaviour Temple Grandin Change you brain change your life DR Amen neruopsychiatrist who also connects things Brain Allergies All of these books are connecting things in our lives so that we have a deeper connection, I feel I can't eat animals that have been factory farmed and that farming animal that way is unbelivably cruel and then they are sent to slaughter house where they stress they go through and know they are going to die horribly and bears no resemblance to how we used to live and killed a wild animal for food. temple grandin also clearly understands this and connects to it by her invention to reduce the stress of animals going to slaughter, so they can't see what will happen to them. who said autistic people don't have empathy, themedical profession of course who actually are the ones who have no empathy for autistic people. The neurotypical world seems tothink it is ok to farm animals this wayand cause unbelievable pain and suffering so people can have cheap food neuroscience books are my latest interest, with all the current research going on but it will change again probably the spiritual books are probably the most helpful and I do believe we are all spiritual beings but sometimes when you are very sensitive and there are such awful things in the world it is hard to see it that way, I've only got to observe animals such as elephant and dolphins to know that and it makes me so happy to observe animals in the wild, I feel so connected then.. I wonder why many autistic children speak for the first time when they interact with a dolphin , I think it is because there is a much deeper connection going on, I empathise with animals and observe things in them that others don't and despair at the way the world treats them. The problem with modern society is that we are all disconected from what really matters, I don't know if many people will see where I'm coming from and when you are really stressed out , it can make people distressed or irritated because they are imersed in the detail and stress of everything I'm like that myself and aware of it and I understand that so I suppose I had better stop rambling. I hope I have made a little sense and don't want to upset anyone , because people get very stressed on this forum with the problems which I understand having been throuugh it and still going through it which is why I also eventually found comfort with spiritual stuff, but it does seem to temporary rather than long lasting, theminute you have a probelm it all goes out the window, its fine as long as there are no probs to deal with

I've got hyperlexia and auditory processing problems, which were assessed by american speech and language pathologists at lindamood bell in London. There may be some sppech and language therapists now that understand this in the UK, my son has the same and was dx with semantic pragmatic disorder and autism and he has difficulties with expressive language. Auditory processing problems are interpreted in different ways, but how it affects me is partly related to my difficulties with comprehension particulary with things like stories or anything that is an abstract concept I'm the complete opposite for things of factual nature have pretty much photographic memory for that. I don't answer the phone unless it is someone I know very well because I can't follow directions or the conversation and I feel stupid. when I was younger I used to write everything down I was going to say and anticipate all the things I might have to reply too because I can't do it spontaneously because I can't process it, even though Ihear it and I go into rote responses, that to others may seem appropriate but I haven't actually processed what has been said, it is just over years, I've become skilled at masking, Ihave obssesive interests because that is the only way I process information in a way that makes sense and order of things and Ihave friends who have same interests, it is less of a problem then because i already have all the info although i still don't organise it properly. I'm 43 now and only dx 4 years ago, suddenly everything from the past made sense. The processing probs were less of a problem to me when I was young and became a problem once I went to secondary school because education was so auditory based and I could never answer questions and felt stupid etc, and that was begining of withdrawal anxiety etc for me which Istill have, because Ijust can't cope with things that other people can that rely on this eg things unexpected knocks on door phone calls conversations about things that aren't my interest because I can't participate. I'm an adult and as I don't feel it was such a problem to me when I was younger before secondary school, age it is difficult for me to tell what to look out for, but hopefully the info on the sites the last poster posted should help. The good news is auditory processing probs are treateable lindamood bell treat them with programmes, but they really understand it and although it is expensive and intensive in order to work,you can buy in a kit for about 100 dollars and do it yourself, well I can't do it my self but you could help your child. I t increases understanding which helps then all the other problemsthat accumulate. the younger the child is the more successful the educational programme are and the older you are the less progress you make probably because neural pathways are so well formed, and they train them differently

I've read your posts again and I wonder if you should write or phone I prefer writing , o the NAS and explain problems as best you can I know this is can be very difficult as your situlation is very complex with your ex doing this stuff is obviously making things worse. I've got commmuniction probs and feel misinterpreted a lot of the time I wrote to NAS about 4 times over space of year for advice in great detail to probs, because I thought my son wasn't going to survive as I was unable to cope and he ended up homeless and starving eventually, and i could see a disaster coming, and was trying to prevent it but no one took any notice. the NAS, and tried their best to help and eventually narrowed it down,I'm sure if you are able to explain the probs and how complex they are they will have excellent advice and probably people to contact who can help. I can see your situation is different to mine, except for the despair and frustration and depression, I've tried to get mine acknowledged as they were always blaming me too, and succeeded in getting it acknowledged , they dare not blame you then, but are under obligation to help although they haven't done that either in my case, because they don't understand it and don't know how to help but I do and that flummoxes them, because they bluff all the time Don't let them defeat you. people are here to help in what way they can. I can't believe someone did that to your daughter (pants on head) who was that . That has upset me and made me really angry. Sorry if I'm not very helpful but I know there is a way through this you just have to find it and not give up maybe it will take some time to narrow down exactly where you need the help, because it appears complex rather than simple, and there may be others here that have better advice for you than I. I'm sure there is sending you load of hugs and thinking of you although I know that is probably not much help at present Jane

Gosh Jlo I am so sorry you have been and are going through such c**p i don't know what to say to offer help, i've been there myself not in the same way, of course but to the point where you just feel so helpless and hope less, what sort of private assessment do you need, Iknow quite alot of private people, pm me if you like. I went privately for dx. I feel going privately is sometimes the only way to get any empowerement even though it costs money. I've got communication difficulties myself can't express what I need well even though i know what it is I need but no one takes any notice of that, and that cause more probs so I really relate to that . i will read back through your post again to see if I can see thngs more clearly it just sounds like such a night mare, but try and be positive even though it is hard we are here to help, and there are people with loads of info on this site, and it is possible to get thrugh this Do you need a clinical psychologist help or educational or is it something else is the assessment you want for your children or yourself , I wasn't clear about that, myabe it is me not taking it in properly. the NAS has a list of private people that they will give you if you ring or write who may be able to do an assessment you need to see someone who understand the complexity of asd, and spell out what you need. I'm not sure the advice I've given you is what you need, but I don't want you to be suffering like this Jlo.

I really feel so bad for you jlo,your story sounds similar to mine, My son is autistic and it took years to get that dx and I realised I was hyperlexic asd and i found it difficult to communicate probs, and get that recognised also and it is so frustrating, and then no one understands or takes a blind bit of notice of what you say or the problems you have and the fears etc, I don't know what advice I can give you or what you need help with, I will try if you can explain further or as suze said be more specifc with what help you need but my thoughts are with you and please don't give up, I know its hard, in fact its hell but we mustn't give up and let these people get away with c**p.

I thought it did read as though an environment can contribute to problems , most of us here are trying our hardest to get the best for our children, but environmental stuff and brain stuff does fascinate me, so the following info is for information purposes only. I saw a documentary where children were subjected to the most appalling abuse or neglect from baby hood ie locked boxes and kept in cages and deprived of any stimulation or contact etc , when they were rescued at three or four they were left mentally retarded or with brains that hadn't developed properly so had symptoms similar to autism, I studied montessori who talks about the sensitive periods in the first three years of life where children are so sensitve to their environment that is when they learn to talkand walk and willlearn to be bilingual if brought up with 2 languages and will learn a foreign language at this stage much quicker than any other and usually without an accent that we have when we learn languages later,it is very complex and am trying to be brief. Montessori also did amazing work with children with handicaps, most montessori schools bear no resemblance to montessori wild animals reared in captivity can never be returned successfully to the wild because they never develop the skills they would have done to survive in the wild, Iknow some wild life experts think it can be done but from what I can see they never survive very long even when it is done with expertise ie that whale they returned to the wild was never accepted in whale community and craved human contact he must have been quite lonely, he died shortly after and they call this a success. temple Grandin also discuses similar things in her book Animals in Translation using the mysteries of autism to decode animal behaviour. I have a particular empathy with animals myself so love this book, and cried when I read it I know these are extreme example but that is how I'm able to understand things, by understanding all of this stuff on the brain, and it seems that environment does a play apart, but despite knowing all this my son is still autistic and that is why i found all this stuff out before Iknew he was autistic to try and help his development, and the reason i got depessed is because we lost our home in the early 90s with massive debts and my partners business collapsed and Ihad to take him out of private school that I felt was meeting his needs at the time but Ididn't know he was autistic I don't cope at all very easily, and I certainly wasn't depressed in the first 2 or three years of my son's life but I did expereince the most horrendous abuse as a child and during my early years and I do wonder how much is related to that because I analyze everything in such detail, I can't help it because it is the only way I know how to think I also believe that a more appropriate environment with understanding of asd also does reduce some of the problems, I know for certain with my son this is the case and my own stresses are significantly reduced when I feel it is understood. I hope no one thinks I'm saying autism is caused by environment of course I'm not and I really hope no one is upset or feels they may have caused it, I'm just providing my thoughts on it, and I know for certain that my son still had autism, and I just tried to find out everything I could to help him. I then discovered i had an asd myself, although i'm not quite certain that I want that label now due to the awful prejudice I've received, but I'm not able to cope despite knowing all this stuff i'm not able to apply it or orgainse it in any coherent way and I had a b reakdown due to professionals not understanding what my son needed, and then I ended up negeleting him because I felt so severely depressed and still do and i think my own asd may have made his probs worse. oh god i'm rambling, again sorry.

I haven't read you other posts, but you sound as if you have been through hell and perhaps are still going through it, I really empathize with your situation and am sending you l oads of hugs, my thoughts are with everyone who feels so hopeless.

Great news, I'm really pleased to hear this.

There is a community forum also at brainplace.com and there are several books by dr Amen who is a neuro psychiatrist with a special interest in adhd, One I read that I like called "change your brain change your life," and is very detailed on how different parts of the brain are related to difficulties in functioning and processing information such as temporal lobes and prefrontal cortex as well as areas of brain responsible for ocd the cingulate system, and anxiety the basal ganglia system and depression and bi polar the deep limbic system, the difficulties can be seen on scan and can be used for asd also. I'm in contact with someone from the UK who had a scan as she had depression and was told she had psychosis but suspected it was add, and this was confirmed via brain scan, but her psychiatrist refused to accept or give her meds advised by spect clinic saying add didn't exist in adults only children, refused to look at the brain scan or acknowledge it in any way whatsoever saying it wasn't a reliable way to dx mental illness. I dsagree it is far more reliable, and these people are so arrogant it is unbelievable when there is something that could be done to improve her quality of life, they must think people spend loads of money to get something like this for the fun of it

Thanks so much hailey, you are an inspiration, I was worried that I had been overtly negative, I don't want to make other people feel hopeless, it is difficult to get out quite what I intend or how I wanted it and sometimes anaylyse things in too much which detail is good in one respect as it gives me greeter understanding but can sometimes make one feel worse I will look into the books suggested and thanks for being a shining light.

sorry the above post is negative, but I feel it is important that we can say how we feel, because it helps to be able to do that, and because it took me 8 years until i trusted a gp enough to tell them how I felt and then they didn't want to know, it seemed to freak them out and probably contributed to making me feel even worse, because I didn't understand why it is taboo, and afraid to say how I feel since. I do have moments of being positive and I know it is possible to find my way out it is just I'm not sure how to find my way out at present,because I feel so useless, and need to find something that would be interesting and useful I find the stuff you posted inspiring halleyscomet so sorry if I'm a bit of downer with this, but your stuff is great.

I felt really inspired by what you have written hallycomet, I have felt pretty much permanently suicidal since about 1992 prior to that I was always a fairly positive person, I always felt if i tried hard enough I would succeed, even though I never did I never gave up, eventually though because of buildup of a number of traumatic events including losing our home to massive negative equity debt in early 90s still paying back, and becoming homeless and my son having to come out of a private school that was meeting his needs and everything just spiralling dowhill and out of control, I had a breakdown which i don't think I've ever properly recovered from He was finally dx with autism when he was 9 but far from receiving support he just received prejudice, as I had already got inside his head to work out how he was processing information, and had wanted others( teachers etc) to understand that and couldn't understand why they didn't it was so obvious to me, I also realised I also had something very similar, after talking with his psychologist who was involved with research, and was probably related to why I had developed so much depression and powerlessness I realised that i also was perhaps on the spectrum although very mild, nevertheless I felt i had the right to have that acknowledged and felt perhaps people would then listen, after several years I did finally get it acknowledged by a very convoluted route that becaome obssessive in order to achieve it, in the hope it would bring understanding of asd instead of prejudice but it doesn't so now I regret it. I realise now I expect to much validation from people within the system who don't have a clue, instead of having faith in myself. I feel terrible guilt and failure over my son's suffering,he can cope far less than I can but doesn't realise that, and has no insight, and think all his probs are attributed to having a useless mother, in a way he is right, but I Just was unable to cope and felt getting them acknowledged would help things move forward, and have currently got terrible fear that things are going to get worse as we have not communicated much since my suicide attempts 6 years ago, I was on loads of meds at the time, which I think contributed although i was depressed before I went on them, because they make you more likely to carry out the actions. I was trying to withdraw from them at the time, as they weren't working, I was struck of my gp list after suicide attempts and had my records manipulated and falsified which has probably prevented me shifting depression properly The fear is so bad i can't shake it and yet I know I have to try to be positive but it is so hard, because I feel any of the agencies that could help just have no understanding. and it just feels like banging head against a brick wall, I have found spiritual stuff, including dietary stuff, and understanding how the brain works the most helpful to me to try and go forwards, but it is so hard, because i think depression is more of a problem to me, but I will continue to try and go forwards positively, thanks for this thread, I feel so much for Alison and Ryan but part of me thinks well at least they are not suffering any more with having to go through this c**p, which is so soul destroying.

Halleyscomet, |I know someone who is doing research into left brain right brain stuff and trying to get scientists involved , some of it is extremely deep, but much of it is extremely interesting if you are interested in this topic, it also has a spiritual nature to it and by increasing right brain functioning we can feel less troubled, because the left brain has become more dominant over millions of years of evolution and there is a manuscript to download or read online at:- www.kaleidos.org.uk

daisyproudfoot, I only weighed about 5 stone when Ihad this problem, because I became afraid to eat, and became anorexic, I just think eating probs fullstop in whatever form they present in can be part of asd spectrum, whether it is desire to eat only a few types of food and won't try anything else to allergies to foods as well as sensory issues to food, I've got all of them, mildy, but the compounding effect isn't that mild. I don't think doctors take this stuff seriously unless you present as anorexic

Hectorshouse sending you loads of hugs and gosh you have really been through it, my thoughts are with everyone who has ever felt like this, I have too and it is so refreshing to find people on this forum who understand this, I just feel so angry that this poor woman and her son were not given the understanding or support they needed, that is obvious.

halleyscomet , sending you loads of hugs, my thoughts are with everyone who has ever felt like this.

Thanks for interesting info jaded, I can remember Quentin Letts saying his child problems were "cured" ( sorry to those who are offended, their words not mine,) by a chiropractor apparently his child was born with cord round neck, and was always terribly distressed and had behaviour problems etc and cried all the time as a baby, the cord around the neck apparently misaligned things which can also affect neuro transmission, which when corrected cured problem, I presume the distress, however upon seeing the child I still thought he was definitely asd probably aspergers, MY son was also born with cord round neck and was very distressed as a baby, i now wonder whether that was sensory problems seeing what he is like now, and the distress caused by sensory problems, but the reality is i don't know what is what for certain, MY father is a typical aspergers and my nephew too and myself but i am compelled to find out more as researching stuff has always been something I can do, and which interests me, it is my "obssessive interest " but I can only interpret it into what makes sense to me and it may not to other people and in our case I also think there is a genetic predisposition but there are other things that can compound things, eg mmr chemicals food etc and including correct environment for that person and that will be different for every individual, and things can definitely help some people and different things help different people, because there may be a different root cause and different perceptions on what helps, it is very complex. All of us with asd in our family present constellation of symptoms completely differently from another, but the root stuff and what gives rise to symptoms is almost identical, As I'm female i think my symptoms present in a less obvious form, but I have had a great deal of distress anyway. I also like what you say too Lucas, it makes so much sense

just repeated the above post by accident so deleted it, but had to write something

yoyo thanks for posting, I'm really sorry for these problems you have had and that you have been treated in such a bad way because of it, unfortunately there seems to be very little understanding of this, but I'm glad you related to some of what I said because I know I can't be the only one, and through my understanding of asd I worked it out and I know professor gillberg is aware of this problem in some people that have been dx with eating disorders but in fact may have an asd if there are conceptualising problems or similarities with if not actually asd

I have an asd and so does my son, and Ihave had the kelmer test which shows that I have high levels of mercury in my system, I also know other people with asd and children with that also have higher levels than normal of mercury in there system via this test, I think there is a link, although I appreciate others may not have that view. My son went into a coma 3 days after his mmr booster vaccine vaccine, and I think there are others that have had adverse affects from the vaccine, i think it is a bit more than an opinion, and I find that really upsetting although Iaccept that it is many people view. I am very happy that you are coping from what I've read from your other posts that you get quite a bit of support, correct me if I'm wrong, my son and I are not coping and do not get support, and i have had of mental health problems depression etc struggling to cope and only dx myself 2 years ago, and my son ended up homeless and starving, although thankfully he is now rehomed but I'm living in constant fear of the next thing. Mercury does interfere with neural transmissions, and that is pretty well know among many many professionals who have done research in this area mostly in the US. I don't think the vaccine caused my son's autism but I think it was related to the coma he went into, and may have exacerbated things and some people with asd are more sensitive to these types of chemicals. I've read literally tons and tons of research on this and it very complex for me to explain, because I can't remember all the details, but there is loads of it. I don't think there is one thing that causes autism but several different compounding things, and mercury is one of them for some people. I don't believe the core problem of autism can be " cured "at this stage and obviously many people might not want that but I do believe there is lots to be discovered and there are things that can help improve functioning and minimizing problems