deliberate delay or blocking of referal to asd expert

[florrie]

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.

[research boffin1]

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.

[research boffin1]

Hi Florrie,

If I did not know that what you say is true about the probs once a dx goes wrong and what has happened, I would think you were ill. These people are like robots without the capacity for thinking independently. One person reaches a conclusion wrongly and they all stick to the theme like it was superglued to their brain.

This is now three referrals out of area that have gone wrong for you. One might be considered unfortunate, two improbable but three is beyond any basic probability. Professors Baron-Cohen, Howlin and Murphy could all get to grips with your problem and I think that your local service is trying to cover its tail not help you as a patient. I know for a fact that 2 of these people had agreed to see you.

You must get independent legal advice as this appears to be a serious breach of your human rights and should not be tolerated. The local service is abusing your vulnerability for its own ends and should be held to account.

Good luck!

Edited March 21, 2006 by research boffin1

[rainbow queen]

<'> <'>

i have to say i feel like this has happened to me aswell

and it did all stem from one person saying my son was fine and theres nothing wrong.

hes 5 in june -i think it turned everyone else agaisnt me really-ive had all different members of my family coming to these appointments just to prove my son dont just do it with me.

 

i know they dont want to label a child but whats the use of leeting them go on suffering getting no help cause everyones saying there ok.

ive been told it can take years to dx -i have to say ive lost my rag with a few people at these appointments because its a complete joke that my nephew suffered all his life and only got dx at 25 .

 

im hoping im now getting somewhere but u just never know-so i enlisted my sis to come to appointments ect.... for back up and im going be taping his meltdowns to on cam corder.just for extra proof as hes perfect in school and i suspect school think im making moutains out of mole hills .

[florrie]

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

[onlycrazygal]

hi florrie,

if you look at my posts in general forum under (new and in a pickle youll see im going through something very similar to your own problem.....

its true, when one professional makes a statement that theres nothing wrong, it sticks like glue and is put on your records, these ignorant people flag up the fact that the doc is the professional and not you......

my sons doc blatently lied to me, but i confronted him in front of the ss and education, i quoted sections of law, childrens rights, evidence from great ormond street hospital, tsa uk , you name it an fully exposed him for the ignoramus he was........even then hun, my son was put on the at risk register and i was ordered not to seek another medical opinion.

however i havent come this far to turn my back on my son, he needed and still needs help, so behind the ss backs i searched for an independant peadiatrician that specialised in learning difficulties and asd disorders, i still await the official report however the impression i got from the specialist was as follows: that my son has, tourettes, ocd, aspergers,adhd, and sensory integration dysfunction.

please do not give up hun, i know it must be awful for you , but please do not give up , get this solicitor, i can recommend one if you like......start looking round for a top notch specialist, again i can recommend one. get the dx for your son, and on the strength of this you should be able to flag up your own needs AND BE LISTENED TO......

i wish you only the best ,

big hugs, <'> <'> <'>

paula x

0

[florrie]

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

[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.