florrie

I just read your thread paula, it sounds really awful and i really feel for you in my case most of these probs came after dx, but I don't think i've been treated as badly as you but the way they treat me is bad for me and makes me feel terrified because it is all about them having to be right and it really bugs me, and they don't listen or realise that you have your child interest at heart and that is what has made me feel so down with it all.

actually my words came out wrong what they actually did after dx whas put in an inapporiate education plan which i knew was going to be harmful i can't explain the words how i knew I just did and he did have a breakdown and was bullied and it would have been better to do nothin than that, but he probably would have had a breakdown anyway because he can't cope, I've always understood that and what casues him distress, but I just can't communicate with him because the words come out wrong and he gets very stressd whenever i try to communicate but no one else understands that. Sorry I know this is not exactly on topic , I know that will get what you need eventually if you keep going I did but by god it isstressful, but I still am terrified my son will not survive, I just hope I'm wrong.

HI Paula thanks so much for you reply to me on blocking of referal in help and advice secrtion, I really feel for what you are going through all of this actually, in my case we were treated badly after dx not before, and my ex partner accused of abusing me and my son, when he tried to show them that they were breaking the law by either not providing appropriate support or what they were doing which is nothing was harmful. It is just so awful that this is happening to people and I feel so sorry for you

HI Paula thanks so much for you reply to me on blocking of referal in help and advice secrtion, I really feel for what you are going through all of this actually, in my case we were treated badly after dx not before, and my ex partner accused of abusing me and my son, when he tried to show them that they were breaking the law by either not providing appropriate support or what they were doing which is nothing was harmful. It is just so awful that this is happening to people and I feel so sorry for you

Paula thanks so muh for your response, i know it is happening to others but sometimes I don't think people are fully aware this is being done, so it is a relief to know others are aware of this. I've already been through the stuff you have with educational people etc and exposed people for what they are doing, but it still continues, and had private assessments etc and we did have a good psychologist and paedatricaian for a while for my son thankfully for that, but now he is an adult it is horrendous, anyone that has children please be aware of this you haven't seen anything yet, and I'm going through it all again, i just can't believe it, my ex partner is looking for a lawyer just to get some advice at present so if you have any info it would be appreciated, I do feel like giving up all the time, but i suppose something just drives you on to continue, it is not just for me or my son but for everyone else that has children

hi rainbow queen I'm sorry this has happened to you as well, i actually do find it quite scary and maybe thought it was just me that felt like this, I suppose it is true that not everyone wants to be labelled, and maybe professionals don't always want to label people that hadn't occured to me, but i gave them all the info to show i fitted dx criteria and they just ignored it as if i was mad, and it is not about being labelled for me but about having those very real processing difficulties understood for what they are and how they affect one's life because if that happens it can prevent a lot further problems, well that is what i think anyway, and they still don't get or accept it, even now i've proved it with all the tests i had done

I just found out my new gp who appeared to be supportive on the surface and agreed to refer me to asd expert for assessment for mental health probs, depression anxiety ocd and co morbidity problems, it is important to me to see somone who understands mental health probs in asds because last time I was struck off after suicide attempt and said that I didn't appear depressed,because i have a lack of facial eexpression, and obviously did not communicate appropriately as depressed and I don't trust that they know what they are doing at all. My son has just been assessed too but they took no relevant history at all, and did not have a clue about asd like his ocd and sensory probs which is what has driven him to take alcohol and drugs to self medicate. This referal has also now gone wrong like all the others and i suspected it would even though this expert agreed to see me and was shocked at stuff that has been said like asd people end up in prison that has been said twice once when my son was 8 and newly dx, and my new gp is trying to manipulate me back to the people who made my life hell, with there insults failure to dx despite being given all the info and finally being struck off I know these referals are being deliberately blocked and they want me to go back to the people who insulted me and offended me and my ex partner says they are trying to take control of it,and will probaly dx me as delusional or worse no probs at all, I've seen this happen to my sister too with her son and I suspect from posts I've read here it is happening to others. and would like to know if others feel this is happening to them There appears to be 2 groups of people from reading these threads those who get dx straight away no prob and those who it takes years and maybe never get dx at all, and their lives are made hell trying to get it recognised, because once one person says it isn't that they all follow suit, and just look at what the last person said no one contravenes what the last professional said this is more obvious if you are disagreeing with what the professional said and less if you don't, I have tried to deal with them positively but they are going out of there way to make my life hell, and refuse to listen to how asd affects me. I need to be able to cope so that I can best help my son and the reason things are so awful is because he wasn't dx and then not only not given appropriate help but the help that was put in place was dangerous and lacked any understanding so that he would have been better oof without dx and the same happened to me and i actually know what is needed, just some understanding of what probs are not prejudice and group psychotherapy and blame psychotherapy that made things worse and contributed to my suicide attempt as well as the fact that no one would listen to what my son's difficulties were I've gone off on a tangent again and just deleted half of what i have written but I want to know if anyone else feels their referals are being blocked or what advice can be given about this is going on, it is doing harm to people, and if I tell them that off course they are going to say I am delusional, pychotic etc or worse I have no probs at all and just think I have that is about the level of there understanding and the awful thing is i think they probably really believe that rubbish. Some of the stuff going on with children is truly dreadful but the understanding of it with adults in my experience is so shocking, and the arrogance and ignorance that is displayed is absolutely appalling, I have no doubt that none of them have mine or my son's best interests at heart, only their pay cheques and there status. I believe in my case they are being deliberately blocked I suspect by the pct to prevent any kind of legal action taking place as obviously i was dx privately and the nhs specialist put on my records no evidence of asd althougth he reached this conclusion in 1 minute and did no assessment, of course they didn't realise at that time that I knew what an assessment should comprise of , they must think we are all stupid. My ex partner has asked me to post this to see if anyone suspects something similar is happening to them although i am sure that my case is quite unusual although I think children are being deliberately delayedin dx. I don't think this is right at all, and would appreciate any comments, my ex partner has decided to take legal advice, I personally couldn't organise it, but he has seen enough and knew predicted the outcome of this one and even the reasons they would give this time, my worry is it will make things worse and Jake will be prevented from getting any support although that is already happening his assessment involved something that in my opinion iws 20 years out of date and took no history like his ocd and sensory problems which is what has contributed to him seef medicating with alcohol and drugs, and it is the lavck of understanding that he received that has led to this mess anyway, but no one is prepared to listen, if I tell them they will just turn it back on me. In addition where I live asd is treated as a mental illness and whist it is true I have got some mental health probs aggravated by their lack of understanding.

I really feel for you it is so sad when you lose a pet, I wondered whether you had considered another type of pet, where the risk is less, as you mention the road being such a risk, mice rats and guinea pigs can make good pets and are very interesting for children, and can be just as rewarding, although it might not be your cup of tea. I 've had all sorts of pets including horses rabbits dogs cats mice etc, rabbits are really hard work to keep inside but the rats mice and guinea pigs are easier, I personally found just as rewarding. My little mouse that my son brought home from school once was one of the most delightful little pets I ever had and completely changed my perceptions on these little creatures and so intelligent and interacted reallly well, well at least i observed all kinds of interesting little things about it, and I still think about him and miss him anyway just a thought

This psychologist sounds more positive and hopefully can help you, hope everything goes well for you

I had to use private assessments twice to get recognition, the first time 10 years ago when my son was struggling and had language difficulties, and distress we had terrible difficulties getting anyone to take any of it seriously, the school said they had run tests and found nothing wrong, we thought it might be autism but gp said definitely not and in the meantime i had gone to aphasic and got the name of speech and language therapist or pathologist, who also worked in research and she dx semantic pragmatic disorder which at the time i had no idea what that was, eventually he had a breakdown of sorts and got sent to paedatrician who thankfully luckily straight away knew it was asd from the descripcriptions and history and semantic pragmatic dx and I believe it was just luck and he may never have got dx if it hadn't been for her because i didn't know any of this stuff then, god I was so relieved to have someone take it seriously because I was so distressed for him. We were also lucky enough to have psychologist doing research in aspergers syndrome and jake got thorough asssessment as a result of this who was very kind and sympathetic which was a relief, however through this I realised i might also be on the spectrum, but I also had to go privately to get this confirmed. Sadly I don't have much faith in the nhs and apart from the wonderful paedatrician and psychologist we had there aren't many people in the nhs like that, the rest of them were horrible and made things worse.

Some of the so called experts dealing with asds that I have seen didn't even know what hyperlexia was, which is very frustrating because I think it does need to be recognised properly so that appropriate interventions can be used if necessary. I think it is up to us who understand it to insist on this, and hopefully get better recognition and appropriate intervention for it ,there appears to very little recognition or understanding of it in this country, well that has been my experience of it unless anyone knows better or had different experiences, i suspect there may be a growing awareness with some child professionals with asds. There is also some diagreement among professional and experts in the US about whether it is an asd or not it is considered a savant splinter skill running alongside asd. I have the asd traits and have had assessments including ados which put me on spectrum so my feeling is that hyperlexia is an asd, but of course it all depends on what people think hyperlexia is it is not simply being able to read early it is more complex than that, it is usually with very little comprehension to what you have read, and the difficultie with abstract concepts which is not always obvious to others which is why it gets missed.

I f you press on domestic and international providers of neurofeedback you should find a practitioner who uses, there are a lot of these types of neuro treatments around, I know you can buy a small aduiovisual integration thing for around 200 dollars, but i would want to be sure that it would give results before i did that I can't explain how it works very well, but what i have read did make sense to me, they have also done articles in the american neuroscience magazine that I have read

If you press on introduction to neurofeedback on the left hand side column, it gives more information , it is available in the uk but isn't very cheap, although i have heard people on another american forum i go on do get improvements.

I don't know if this helps at all but my nephew from the age of three i culd see aspie traits less than my son but nevertheless quite clear to me obsessional interests in thunderbirds need for routines faddy obsessive eater etc. I did mention it but it was ridiculed by family and sister who don't believe asd exists. However eventually when he was 7 he ended up at psychiatrists because of behaviour she could not cope with, and he did a brain scan and told her he had autism and psychosis, Imust admit i didn't know they could tell psychosis on brain scan but that is what they told her, and I was intrigued because my dad had been dx with manic depression as a teenager. Any way the school also thought as well as health visitor at this stage thought he had aspergers, but when she wanted it in writing he refused and said it might go away and he didn't want to dx it formally in case he got sued at a later stage, so he referred her to paediatrician who said although he had some autistic traits it wasn't aspergers because he had empathy and knew what a mother and father were, but didn't do a proper and thorough assessment for asd and referred her back to psych, who then started to blame my sister for his behaviour and said it was her parenting that was the problem, she got cross and said she would go privately for assessment and when she did so she would be letting them know. I did groan when she told me she had said that because i don't think that was a good idea to say that it must make them feel threatened She asked for a second referal on nhs but that went wrong as refused to see her and said orignal dx was adequate, and ever since then she has been getting letters from psych which she just bins, and guess what now all his medical notes have gone missing. I actually don't think she will get dx on nhs now and can't actually afford one privately which is why she should have thought before she spoke I'm not going to make any conclusions about this make your own mind up, but don't take it to heart if they blame you for things, mostly its people who don't get it and aren't competent to dx asd.

Oh yeah I forgot what I was originally posting, if you feel your mental health is being affected you could always try your gp and try to access help that way.

I'm a bit worried that i was too negative and you sound really stressed and I really feel for you , try and be positive and I know it is hard sometimes, it sounds like you might need some extra advice from some one to help get you the support you need< i'm not very good at getting that myself although I'm lucky enough to have my ex partner fighting on my son's and my behalf, otherwise i dread to think what would have happened, things are better at present and looking like there might be a light at the end of the tunnel, and i like what daisy said about looking at fighting for getting things recognised can be fun rather than stressful, i find it hell but it does give it a different way of looking at it which does help.

I know how you feel sue, hang on in there it is tough, but you've just got to keep chipping away, well done, i'm like you it took me years to realise nobody is really on your side, the only person your daughter has got to fight her corner is you, it may sound extreme to those who are fortunate to have got some support but for the rest of us that is the reality, and yes thank god for this forum, I feel better for being able to have my rant other wise it just gets bottled up and makes things worse.

CarerQuie, what a great idea.

Thanks, things are a little better at present I agree people ignore the situation because they are able too i go into passive mode and I agree with the rubbish they say because i can't process it quick enough annd sometimes it can take weeks to get together what i want to say or even years, and then I feel like i want to explode with frustration bu t no one understands why but when it builds up year afer year after year thats what happens, probably what is also happening with j and other asd who have meltdowns it is the sheer overload and stress they experience and it may not be clear what is causing it at the time of meltdown I've learnt to internalise mine as outbursts weren't favourable for me but it has made me more mentally ill. I wouldn't know how to get the newpaper to publish story anyway. J moved in to his new flat yesterday but it is a year trial and i'm so worried things will go wrong, I mean disaster occured when K went on holiday for 3 weeks in summer, there are a number of rules ie no drugs or he is out, no music that is loud and that is his main interest and he doesn't get why it might irritate others, although I think he is begining to i hope so, and if they are broken he will lose accomodation and he is not always able to control the situation with people that takeadvantage etc, I know he will try his hardest, I just hope it is enough, he'll get it eventually it just takes time and usually disaster occur before he gets it, I can't cope with it I'm the opposite I don't want to do anything to offend anyone and take it to the other extreme He is getting some support from some who is checking things on behalf of the housing association, but no understanding of asd, she started lecturing him and K said he hadn't understood a word of it but it is not always obvious to others, when you explain he hasn't understood they then treat you like a "retard" sorry for that dreadful expression but I couldn't think of another word to explain what i mean i don't mean it literally and would never use that word to descrive anything normally which he is very sensitive too, and makes him paranoid.

I agree with you bid I think girls and women present differently, I'm like you I internalise and therefore have alot of mental health probs but can pretend to be normal mask for short periods of time, it has actually become more difficult as i've got older with trying to help get support for my son eventuallu i had a breakdown, and withdrew completely which I feel terrible about. I hope the dx goes ok, and mention that girls and woment present differently professor gillberg realises this and is in one of his books, might be useful to use, although maybe they get irritiated if you try and tell them, anyway hope it all goes ok That was why I waso keen to get dx because they were implying i was inadequate and didn't care about my son after my suicide attempt, it never occurs to these professioonals that there lack of understanding and incompetence were part of what took me to that place, althoug i know not everyone has had that lack of understanding, if i ever got it from one of these professionals it would make a difference because i would feel validated

can't offer you any advice except to say I know how you feel and it makes me really frustrated and angry at this delay that is going on in dx children and incompetent people who do not know what they are talking about, and the distress they put us parents through, and the harm it also does to the children particularly if you follow those recommendations I went through it ten years before my son was dx and another 8 for myself and it is still going on. I had to take my son out of school when he had a breakdown due to bullying and inappropriate education plan, but because we blamed them, we never heard a thing, they were quite happy to just ignore the situation when it suits them Really sorry to hear you are going through this

everyone on here has been an absolute godsend, even though people have got their own difficulties they have taken the time to repeatedly come back to this link and offere heplful advice. Thanks all so much

I know I have to work at remaining positive otherwise I will just crumble, and the positive messages Ihave received have really helped with that, and dwelling on the negative things that have happend in the past doesn't help, I have to move forwards and it is reaally hard because i have got bad depression and i think it has probably been caused or exacerbated by all of this, i have to try and move forward now. I can't bear all that negative comments they make, it really hurts, although my gp was nice to me but my first one was too but eventually got fed up i guess because they didn't know what was wrong and kept making the wrong conclusions before i understood i had asd. Ihave difficulties arranging thoughts around concepts which is what lb tested for and institue of cognitive neuroscience and causes the communication difficulties in all asds, and in my case why i ramble and sometimes never get to the point I do reach conclusions but I can't demonstrate them because i process differently and you can't just say to them well iknow because i know, you need tot demonstrate how you know, and that is what is so hard, and while most people on here have understood what i'm saying because of there own understanding of asds gps, and those with no understanding or experience of asds don't. I remeber being told by j psychologist of a asd child who could get to the right answer but couldn't do it the way he was taught so they put him in the remedial set or whatever they call these days. Also because I present on the "mild" end of the spectrum the expectations put upon me to be able to cope have been overwhelming, but my ability to arrange my thoughts around concepts is actually severe and this is the core prob of asds and why you can't say it is mild or severe based on what you think you see. Sorry for ramble

Thanks for support this is a new gp as i moved jake from other practice as i became certain the other gp was blocking referals to his psychologist because he never received them and i madeurgent calls to him and he never received the messages, one day he saw that i phoned and called back immediately and saw us the next day he said the referall had to the wrong place, the thing is has happended 4 times with that gp so I'm incllined tothink it is deliberate. There are no gps in that practice with understanding of asds, i did have one about 6 years ago who was great but another doctor struck me off his list it is really complicated and I don't know why, I wouldn't dare complain otherwise you will never get any help,and it all goes on your records, anyway i complained before when i was struck and they just doctored my records and manipulated stuff and said i was an unpleasant person etc which really upset me, one doctor told me to f*** off and sort mylife out when I felt suicidal . and alstuck together , there was nothing I oculd do i've learnt that when you object you get burnt you get burnt, I have to go another way round it. I know I sound paranoid and I am but it is true. K will tell you too it is true, i think they misinterpreted me to such a degree that they thought that was the best way to deal with me, I don't know why I'm only guessing

Thanks so much for that support pepper, it is just so difficult, I just cannot believe it either, Ijust do not know what to think, I agree he is not coping because of the terrible so called support he got earlier which was harmful, and that then contributed to my difficulties in coping. I'm feeling very anxious abut this