Trying to get help

[dee23]

Hi all,

I have posted briefly on here before about my partner possibly having AS. He has just had a bad week, with increasing stress that led to him phoning me in tears twice, on Wednesday and Friday. On Wednesday he had just had a meltdown on the farm he was working on (he is self employed and at the moment has work on several sites - something which in itself is causing great stress), he had been head-banging a stone wall and tried to put his head through the window of his van. I have seen him meltdown and head-bang many, many times and can well imagine what this must have been like. Fridays call was much the same, but he lost it while on the phone to me (i raised my voice in an attempt to make him listen - last straw for him), screaming and howling incoherently and then hung up. I called 999, just didnt know what else to do, reported him as a danger to himself and potentially others. To cut a very long story short, the police contacted his GP surgery, who called me, i arranged an appointment with them and went to collect him. (I took his vehicle keys from him and took him home, and on the drive back he was pointing out my speeding, and telling me that, yes, it was appropriate for him to point it out as my driving was "wrong").

 

Anyway, he went to sleep for a couple of hours and then i took him to the doctor. Slightly hair-raising moment in reception because his appointment had been made between me and one of the GPs, so didnt show up at first. The doctor was brilliant. He is one that Alex has seen a few times now over the last few years and it seems he has finally realised there is "something underneath" all the problems and behaviours that bring Alex into contact with him. He went down a line of questioning about childhood - age 5 or thereabouts - asking how did Alex mix with other children, did he have friends at school, did he play with others etc. We had not yet approached the GP about possible AS, although i did mention it at this point. The doctor said he didnt know enough about it to say very much and that he had been thinking of possibly something like ADHD as a diagnosis. His questioning was so perceptive though, i could hardly believe i was hearing it. He then had a chat along the lines of: your problem is not an illness, it has clearly always been with you, it is the way you are "hard-wired" and there will be no chemical cure, we need to find some way you can be supported, probably for the rest of your life. I'm sure you can appreciate the relief in the room at hearing this..... We have another appointment for tomorrow, Tuesday, and the GP is intending to have spoken to a psychologist before then with a view to a referral.

 

I suppose i am posting partly to get this off my chest. I am so exhausted with all this, and his stress levels are still high, bringing with them the ever present possibility of meltdown (these usually happen away from me these days, but i get the calls after and have to pick up the pieces), and a range of behaviours that get worse with stress like monotonous, domineering speech, rigidity - needing to control and have everything orderly and predictable. I have known Alex now for 13 years, and i would hardly call us a couple anymore (nor would he) but he still lives with me (and my teenage daughter) and his behaviour still dominates my life, something he seems to find quite hard to grasp. I do still care for him however, and if i can support him to get proper help i will. I suppose i have also posted to see if anyone has advice about how to handle what comes next. It feels like we are on the brink of a real breakthrough, but i am terrified about what may happen if it goes "wrong". If he is not accepted by the psychologist, if they say there is no problem etc. He has heard so many times that he "just" has an anger management problem, or has been put on anti depressants, which he does not cope well with at all. I took him to A&E earlier in the year after a meltdown in which he all but attacked a passer by and threatened suicide. The experience was appalling, and resulted in the usual "you are not mentally ill, you are just angry, go away, we can do nothing for you". She may as well just have said pull yourself together! So, if progress isnt made tomorrow, or in the near future, i dont know what it will do to him (or me!). He used to refer to these episodes as panic attacks, but since we started looking into AS and discovered peoples blogs and accounts of their meltdowns we have used that word, as it seems so much more appropriate than panic attack. He is in full agreement that AS fits his feelings and behaviours in a way that nothing else has ever come close to, but he is struggling to allow himself to believe it. He has said that a diagnosis would give him permission to accept it, but without that he is scared of believeing something that may not be true - he would feel he was making an excuse for himself. The doctor has given him some 2mg Valium, with instructions to take one if he feels a meltdown coming on. Alex said that was much more acceptable to him than medication every day, but i am not convinced he will be able to behave so rationally once one is starting.

 

Sorry this is long! (Although it could have been much, much longer....... )

[smiley1590]

i can understand personally as i been there with meltdowns,A&E hosp suicide attempts seems like MH probs to me depression,anxiety and AS too is he getting help and support from professionals like MH team?

[smiley1590]

having the need for control,wanting everything orderly and predictable wtih head banging is autistic signs as with meltdowns like his brilliant doctor siad thinks this something more lying beneath i totally agree with him! alot adults are now being found to have an ASD but missed out on assessment and diagnosis of years through services and systems surprised MH team havn't pick him up beforehand!

 

pull yourself together isn't helpful expression to hear and won't help him improve just drag him further down! he sounds depressed and anxious! im not surprised you're exhausted and stressed out completely you need help and support as family and i hope tommorrow will be new beginning for your family!

 

maybe doing research on ASD on here the net! search engines! books may help understand more about eachothers lives! you both frustrated! you sound depressed too! 'an asperger marriage'-Gisela Slater Walker and Chris Slater Walker

 

anti -depressants don't effective work on there own need help and support with it! hope tommorrow brings some answers to questions searching for so long hopefully it stops and ends!

 

it sound more than just an anger problems way much more and needs to be looked into carefully and deeply!he sounds confused lost like you are he gets distressed and upset and doesn't really know how to fix it as such!

 

head banging is coping with stress and anxiety helps calm them down relax and chill common behaviour to display in autistics in general!how long he had these behaviours and problems since when? and how else he affected? main signs he shows?

 

i hope tommorrow success road to new for you both!exciting nervous and scared! hope pyshcologist give you some insight into what going on for you guys and productively help support that you so need for your family to work sucessfully!

 

good luck with eveything

 

be prepared for things that may get found underneath it all! hope find what's really there! he sounds so like me though and i have AS! and MH probs!

 

take care

sorry no-one taken you seriously so far! hope that stops tomorrow too! you deserve answers to questions you have!

at least tommorrow a starting point of focus!

 

XKLX

[Tally]

It sounds like you did all the right things to support him and that his GP is also supportive and helpful. Admitting he doesn't actually know much about AS is actually a good sign, because it means he is likely to seek an appropriate person to refer him on to. It's a very good sign that your GP accepts that this is a lifelong condition and that your partner accepts the possibility of AS and is willing to accept help. Hopefully the doctor's attitude that there is something genuine here will help your partner to accept that he is not just making excuses until you can get a clear diagnosis.

 

It's possible to have AS and ADHD, or AS and mental health problems, so it's worth keeping an open mind for now. AS can make it difficult to verbalise or even recognise when you are becoming overwhelmed, so other problems can be difficult to identify. Acceptance and understanding of an AS diagnosis can lead professionals to find ways around it to work out exactly what is going on.

 

It might be helpful if you can attend the psychologist appointment with your partner to help make sure that he raises all the issues, including ones that he might not be aware are issues. Obviously he will need to attend individual sessions and may feel more able to be open and honest without you there, but your input could be helpful at the assessment stage. You and he can get together and write some things down if you think it would help to make sure you remember everything.

 

AS assessment for adults is often hard to come by and there are relatively few diagnositicans qualified to assess adults. Many adults are left with no option other than to seek private assessment. If you can afford this, it might be a good way to get answers more quickly. I think that in your case, you need to stress that a diagnosis could be key to accessing the right support, and that treatment for his anger management and meltdowns will need to take the AS into account. The fact that previous treatments have not been helpful is a sign that they were being approached from the wrong angle.

 

I hope that the valium turns out to be helpful and that he is able to take it when he needs to. It is, however, a short-term strategy, and will not help deal with the underlying issues which are leading to the meltdowns in the first place. You realise that he won't be able to drive after taking it?

[dee23]

Smiley and Tally, thank you for your replies. We have done a lot of research on the net, and got a book about AS and Anxiety, which he says is helpful, although i think he finds it hard to read in any more than small chunks at a time. His response when he first looked at a list of AS traits was that it was like a chink of light in his life for the first time. I agree that the GP admitting to not knowing much about AS is a good sign, unlike the last counsellor who dismissed it without even listening, on the grounds that Alex had "insight" into his behaviour!

 

It is such a relief to hear from others with AS who can identify with his behaviour. I too have had times when i feared we may be putting too much emphasis on AS, but everytime i look on a forum such as this, or read more in general, i discover more that only confirms it. I am trying to encourage him to use forums like this, unsuccessfully at present though! He has not been supported by the mental health team since he was at school, when he was removed from home and mainstream education, but then seems to have slipped through the net at age 16. He explained all this to the GP on Friday, which all helped to clarify things. The MH team have consistently refused to accept him as an adult, even though he had a very sympathetic counsellor who tried hard to refer him a few years ago. The response has always been that he does not have a mental health problem. I really feel for all of you battling with this all the time in an attempt to get some meaning and help in your lives.

 

And Tally, yes he was made well aware that he could not drive after taking a valium. This is a worry as his driving suffers anyway when he is near meltdown, and becomes unable to cope with other drivers behaviour and unpredictability. He becomes hugely stubborn when stressed and near meltdown, like he is fighting it and refuses to "give in". Hopefully he will be able to heed that if it comes to it, now that he feels his GP is on his side. I await the first call to collect him from some middle-of-nowhere wood he has melted down in!

 

Thanks again. My thoughts are still such a jumble, but thanks for your support.

[Karen A]

Hi dee.

I do not have an AS diagnosis.However I have experienced panic attacks.At times I have behaved in some of the ways you mention when not coping well.

I am very well now.However my partner would understand very well how difficult it is supporting a partner who is having periods of feeling very distressed.

I did have one thought.Would Alex be able to decide that he needs to take the valium ?

When I became anxious I had little warning of the build up of anxiety.I would not have been aware that I needed to do anything until I was very anxious ineed.

Now I can tell when I am becoming anxious and can take action to avoid having a panic attack.However I have had a lot of support to reach that point.

I think the Valium might be helpful as a short term measure.

However Alex may well need some support in learning to identify when he is becoming anxious.

An AS diagnosis may help in explaining some of the factors in the anxiety.

It may also help in finding professionals with some understanding and awareness of AS.

However it might be worth bearing in mind that there is often no specialist provision for ASD for adults available.

So even with an AS diagnosis it may be a case of attempting to access talking therapies such as CBT that might be helpful.

Valium alone may help reduce the anxiety but other support may be needed to help Alex to prevent the anxiety building up.

[smiley1590]

to me personally sounds like he does have MH probs and that from sombody that suffer it from themselves sometimes MH professionals get it wrong! he does sound depressed and anxious suffocated and ovehwhelmed! i would debate the decision he doesn't have a MH probs in his life! let us know how today goes please!XXX

[smiley1590]

i fight it and refuse to give in this make meltdown worse though! as i won't back down i'm strong minded determined and stubborn! why was he removed from mainstream education and home life due to his meltdowns anger etc?

 

my counsellor picked on 'something else there' not just plain MH probs i was then referred to complex difficulties clinic which then assessed and officially diagnosed me as 'Aspergers'

 

i think CBT would great idea to help him understand his behaviour more and recognise when meltdowns is coming and try change negatives thinking patterns into positive ones! try find who he really is! the pyschlogist will hopefully suggest this as way moving forward whether he has AS or MH probs!

 

i would get in touch with NAS and see what advice and support they can give you -ring or email

 

Hope this website link helps you find more information and research within what could be going on for you both!

 

http://www.autism.org.uk/partners

 

XKX

[Karen A]

http://www.asd-forum.org.uk/forum/index.ph...=partner+autism

I thought this link might be useful information.I don't know where you live but the group takes place in London.

I have not attended as my partner does not have AS and he does not wish to attend.

However I know others find it helpful.Karen.

 

[dee23]

Well... he does not have a psychologist referral, but the GP has spoken to the psychologist. He has also taken the time to read through Alexs medical records. What Alex does have is a referral to the practice counsellor, which he is pleased about. He saw her about four years ago, and trusts her. He has also been given a mood stabiliser, an epilepsy drug (he does not have epilepsy) called Carbamazepine. Low dose to start with, and back to the GP in a couple of weeks. He is willing to give this a try. The doctor seems to be leaning much more now towards Alex finding ways to understand and work with his feelings and behaviours, rather than looking for causes. His medical records detail the fact that he lost his father at 9 and then the problems with his abusive stepfather and increasing behavioural issues that led to him being removed from school and home. (He was sent, funded by SS, to a Quaker run boarding school in Oxfordshire. I find it difficult to grasp how a child can recieve a service like that and then somehow disappear from the SS radar). The doctor was quite taken aback by all this (obviously never read them before!) and the amount of trauma that Alex has experienced and never been helped with.

 

What was interesting today was that Alex talked to me about how he has been talking to his mother about AS and his early childhood. His memory of himself is of being in his own little world, hers is of a boy who could not sit still, be told what to do or left alone for a moment without him "getting into something" - like taking the tv apart. So maybe the ADHD was not so far off the mark? She also looked at some AS traits, and apparently saw a lot of herself in them.

 

I have been lucky enough to find a couple of possible avenues of help through work contacts too, including a counsellor who specialises in AS. We could not afford to go private at the moment, but she is a former colleague of my boss and is apparently happy to give me some advice if she can. (Not sure about a referral as she is out of our area). I also know an OT who is starting to work in a new unit attached to a psych hospital near us, for adult ASD, so i suppose we could just ask the doctor for a referral there, if nothing else happens. At the moment he is happy that he will be seeing a good counsellor again soon, and he will bring up the issue of further assessment or diagnosis with her, where he can explore it in more detail i think, without the pressure of feeling he has to convince anyone, if you see what i mean. He is much calmer now, and can see that help is on the horizon, he usually has great difficulty looking forwards like that. I will try the nas, have been waiting for him to do it, but i think that is a bit too difficult at the moment.... I thought i realised how complex his problems were, but i am beginning to think even i have only been seeing the tip of the iceberg!

 

Thanks again for all your replies and links. That is my fear with the Valium too Karen, that he will not be able to recognise when he needs it. I am glad you are feeling well now, i have been lucky enough never to have experienced panic attacks myself, witnessing them is bad enough, i cannot imagine what you must have been through experiencing them. We are near Weston super Mare, in North Somerset, if that helps with any groups that anyone knows of. Smiley, your posts have made me smile! You sound a lot like him and you have clearly been feeling for him in your replies, thank you so much for your concern, and i wish you strength for your own journey in life. XX

[Kathryn]

What a really distressing situation for both of you you and I'm full of admiration for the way you've coped with it. Alex is fortunate to have your support. I hope he gets the help he needs.

 

K x

[smiley1590]

he could have ADHD but some AS traits and can overlap there no way you can see someone from NHS? i glad he seeing understanding counsellor again soon yeah i would ask doctor for referal to Adult AS unit and see where that leads you!i'm glad i make you smile though! yes i have really felt touched by both your experiences and stories and can so understand how your husband feels! his mother may have AS too so she maybe look into that? he may have PTSD due to the childhood abuse have you looked into this MH problem! he probably seems calmer because he knows that support and help is there soon and going to be possibilty of finding 'right' answers if feel ready to do so but he can take it at 'his speed'!

 

you have such a positive outlook and this must help him so much i think you great he's lucky to have such a understanding lovely kind caring partner!maybe you could remind him to take valuim when he needs it or would this cause heatedness in his kind and arguements +meltdowns! yeah i would look into speaking to counsellor who specialises in AS as she may able to give you practical advice and maybe explain abit more about how spectrum works give you information and detail to help you in your research!sounds like the 'tip of the iceberg'! but at least you on your way now with different avenues to you take!

 

take care

XKX

[smiley1590]

i would just contact NAS to find out more information and advice from them may also help you as a partner on spectrum of some kind!

[Karen A]

Well... he does not have a psychologist referral, but the GP has spoken to the psychologist. He has also taken the time to read through Alexs medical records. What Alex does have is a referral to the practice counsellor, which he is pleased about. He saw her about four years ago, and trusts her. He has also been given a mood stabiliser, an epilepsy drug (he does not have epilepsy) called Carbamazepine. Low dose to start with, and back to the GP in a couple of weeks. He is willing to give this a try. The doctor seems to be leaning much more now towards Alex finding ways to understand and work with his feelings and behaviours, rather than looking for causes. His medical records detail the fact that he lost his father at 9 and then the problems with his abusive stepfather and increasing behavioural issues that led to him being removed from school and home. (He was sent, funded by SS, to a Quaker run boarding school in Oxfordshire. I find it difficult to grasp how a child can recieve a service like that and then somehow disappear from the SS radar). The doctor was quite taken aback by all this (obviously never read them before!) and the amount of trauma that Alex has experienced and never been helped with.

 

What was interesting today was that Alex talked to me about how he has been talking to his mother about AS and his early childhood. His memory of himself is of being in his own little world, hers is of a boy who could not sit still, be told what to do or left alone for a moment without him "getting into something" - like taking the tv apart. So maybe the ADHD was not so far off the mark? She also looked at some AS traits, and apparently saw a lot of herself in them.

 

I have been lucky enough to find a couple of possible avenues of help through work contacts too, including a counsellor who specialises in AS. We could not afford to go private at the moment, but she is a former colleague of my boss and is apparently happy to give me some advice if she can. (Not sure about a referral as she is out of our area). I also know an OT who is starting to work in a new unit attached to a psych hospital near us, for adult ASD, so i suppose we could just ask the doctor for a referral there, if nothing else happens. At the moment he is happy that he will be seeing a good counsellor again soon, and he will bring up the issue of further assessment or diagnosis with her, where he can explore it in more detail i think, without the pressure of feeling he has to convince anyone, if you see what i mean. He is much calmer now, and can see that help is on the horizon, he usually has great difficulty looking forwards like that. I will try the nas, have been waiting for him to do it, but i think that is a bit too difficult at the moment.... I thought i realised how complex his problems were, but i am beginning to think even i have only been seeing the tip of the iceberg!

 

Thanks again for all your replies and links. That is my fear with the Valium too Karen, that he will not be able to recognise when he needs it. I am glad you are feeling well now, i have been lucky enough never to have experienced panic attacks myself, witnessing them is bad enough, i cannot imagine what you must have been through experiencing them. We are near Weston super Mare, in North Somerset, if that helps with any groups that anyone knows of. Smiley, your posts have made me smile! You sound a lot like him and you have clearly been feeling for him in your replies, thank you so much for your concern, and i wish you strength for your own journey in life. XX

 

Hi dee.I had not gone into much detail as I am attempting to move on and do not usually talk about my own past here now.However I thought it might help if I provide a bit more information.

I am a Forum member here because we have Ben who is 10 and has AS.Ben was finally diagnosed a few months ago.Previously CAMHS had been unable to decide on a diagnosis for Ben because of my very complex mental health history.I had a very traumatic time when I was young.My brother [age 16]commmitted suicide in our home during the night when I was 9.

I never received any support and returned to school on the afternoon my brother died.He was never really mentioned again.I do not know how old Alex is.I am 43 and families and professionals had some different ideas in the 1970s regarding how to support children.When I discussed my history with CAMHS psychotherapists and psychiatrists during assessments for Ben they were shocked. The CAMHS professionals come across many stories and I gather it takes a lot to shock them

I trained as a nurse and married my partner.Then very soon after Ben [our younger son we also have J] was born I became progressively more unwell.I was fortunate that I found an excellent psychotherapist and we could afford to pay for private support.My therapist has been excellent and fortunately she managed to support me so that I did not need to access mental health provision via the NHS.I do not know what diagnosis I would have been given if I had been picked up by the NHS.

I was also very fortunate to have a supportive partner.

With the support of my therapist I gradually got better.I was really very well and was thinking about finishing therapy and returning to work.

Then three years ago a teacher who had a son with AS suggested Ben might have AS.

We started seeing professionals from CAMHS in order to attempt to establish whether Ben had AS.

It was am extremely unusual situation.I had never even visited my GP regarding my mental health problems.However some excellent professionals with specialist experience were very clear that I had at times been very unwell mentally indeed.

CAMHS were more or less certain that Ben did not have AS but that he had some difficulties related to having a mum who was very unwell in the first three years of his life.

Last year Ben decided that he would like to find out whether he had AS.CAMHS were able to offer a 3di which is a specialist assessment tool for AS.

We were told by the professionals who support us that it would show that Ben did not have AS.But after all that Ben does have AS according to the 3di.

I know I have waffled on a bit.But I wanted to show that despite having suffered extreme childhood trauma I am really very well now.

I am fortunate to have a supportive partner and some excellent support [i still see my therapist].However I am loads better now than I could ever have hoped.

My partner is not a Forum member.But I know he believes that our relationship is actually far stronger because we have coped with things that would have ended most marriages.

I will never know whether I have AS.I certainly have a lot of the same issues as Ben and he has a diagnosis.

I have an extremely complex history, the people who would need to provide the information for an assessment [my parents] are no longer alive,I have had 10 years of psychotherapy and the CAMHS psychootherapist who is an expert in childhood trauma could not decide on Ben .

However with support, an understanding of how to manage anxiety and information that I have learned on the Forum I am very well.

I hope that this has helped you to feel that you are not alone and that Alex can get better than he is now.Karen.

Edited May 27, 2009 by Karen A

[Karen A]

Hi.I thought I would say.Although I have never had assessments for an AS diagnosis myself I found the assessments for Ben which included exploring my history extremely stressful.We had some wonderful support from CAMHS however appointments still sturred up lots of very difficult emotions.So it might be worth bearing in mind that if Alex has a background including loss and abusive parenting assessments for an AS diagnosis could be very stressful.

If I am honest I went through the CAMHS assessments because I wanted Ben to have the support.However I don't think either my partner or myself would have done it for me.

It may be worth thinking about the pros and conns of obtaining a diagnosis very carefully.With Ben he has obtained a lot of support and so has benefited from diagnosis.

However there is currently very little provision for adults with AS.So it might be that people who have an understanding of AS may be able to support yourself and Alex without a diagnosis.There are some excellent books regarding AS in adults for adults and partners of those with AS.Relate also have some counsellors who have experience in AS.

So a lot can be learned from reading around.

My psychotherapist has helped me hugely.She also provides us with a lot of support regarding Ben.She had been supporting me for several years before AS was ever an issue for our family.

It is I think relatively unusual to have possible AS and a history of childhood trauma.I have not come across anyone else in a similar situation in my time on the Forum.

So it might be worth thinking about the impact of assessments for AS on yourself and Alex.

It is also possible that after attempts to obtain a diagnosis you will not be able to find a professsional with the knowledge and experience to decide regarding diagnosis.I know that there are no professionals in this country who would be able to diagnose me.It is a very specialist area.Also to be an honest I think a private assessment with a professional who did not have experience of childhood trauma and was not able to provide adequate support in the process could be more traumatic then helpful.It is a highly specialist area.

I hope that is helpful.Karen.

[dee23]

Karen, thank you for your honest and humbling reply. Alex is 34 now, it seems there was not too much support around in the eighties either. Your thoughts about AS and childhood trauma are very interesting, especially with regard to the effect of the assessment process. I was surprised, pleasantly i might add, that he had spoken to his mother, (i haven't spoken to her for 4-5 years, but that is definately another story!), and glad that she had obviously shown an interest in his thoughts and talked about him as a child. She too has been told by those around her that her sons difficulties are basically down to her parenting, and she too recieved little support when she lost her husband, so the family history is understandably difficult for her to think about, let alone talk about i imagine. When we first started to look into AS it was Alex who very quickly decided he wanted to seek diagnosis, and he has not really wavered from that since. I know he has a feeling of not quite allowing himself to believe it without "official permission", but i think he just desperately wants an answer, a reason for who he is. He has seen himself so strongly in the lists of traits and behaviours associated with AS, more so than with anything else he has looked at (such as depression or anxiety or even PTSD), but even without ticking boxes on a list it may help him explain why he has just basically never felt "right", never felt at home in the world or able to make sense of it, in a very profound way. And also he has never been able to make sense of his own behaviour, why he has hurt himself and those around him, why he has wrecked working relationships, why he just cannot really cope with the world around him, no matter what he does. We have been thinking about the pros and cons of assessment, and there have been times that i have feared he might not be strong enough to cope with it, but it is still what he wants. In a way i am glad he has been referred back to his counsellor before anyone else, such as the psychologist. She helped him a lot in the past, and he trusts her enormously, so i think seeing her will give him the chance to explore it all further, and, as Smiley mentions, at his own pace. Thank you again. I very definately feel less alone for coming on here, and your posts have given me lots to think about.

Ben is a lucky boy to have his brave and strong mum on his side.

Take care xXx

[Karen A]

Karen, thank you for your honest and humbling reply. Alex is 34 now, it seems there was not too much support around in the eighties either. Your thoughts about AS and childhood trauma are very interesting, especially with regard to the effect of the assessment process. I was surprised, pleasantly i might add, that he had spoken to his mother, (i haven't spoken to her for 4-5 years, but that is definately another story!), and glad that she had obviously shown an interest in his thoughts and talked about him as a child. She too has been told by those around her that her sons difficulties are basically down to her parenting, and she too recieved little support when she lost her husband, so the family history is understandably difficult for her to think about, let alone talk about i imagine. When we first started to look into AS it was Alex who very quickly decided he wanted to seek diagnosis, and he has not really wavered from that since. I know he has a feeling of not quite allowing himself to believe it without "official permission", but i think he just desperately wants an answer, a reason for who he is. He has seen himself so strongly in the lists of traits and behaviours associated with AS, more so than with anything else he has looked at (such as depression or anxiety or even PTSD), but even without ticking boxes on a list it may help him explain why he has just basically never felt "right", never felt at home in the world or able to make sense of it, in a very profound way. And also he has never been able to make sense of his own behaviour, why he has hurt himself and those around him, why he has wrecked working relationships, why he just cannot really cope with the world around him, no matter what he does. We have been thinking about the pros and cons of assessment, and there have been times that i have feared he might not be strong enough to cope with it, but it is still what he wants. In a way i am glad he has been referred back to his counsellor before anyone else, such as the psychologist. She helped him a lot in the past, and he trusts her enormously, so i think seeing her will give him the chance to explore it all further, and, as Smiley mentions, at his own pace. Thank you again. I very definately feel less alone for coming on here, and your posts have given me lots to think about.

Ben is a lucky boy to have his brave and strong mum on his side.

Take care xXx

 

Thankyou very much. <'> <'> <'>

These are very difficult issues and I do not pretend to have answers.Sometimes there are no easy answers.Lots of friends have helped our family along the way but sometimes what is most important is to do what feels right.Some very good friends thought we were mad to go through with assessment for Ben when things were going well.But like Alex Ben wanted to know if he had AS and we felt it was important enough for him for us to not stop him finding out.

My dad died in 1986 when I was 19 and my mum died nearly five years ago.

My partner and myself have talked often about my parents.We are both very glad that my mum died before concerns regarding Ben having AS were ever raised.So many of the issues are very diffficult for our parents generation.They did not grow up when there was any awareness of ASD or mental health issues.I think my mum and dad would have found it very difficult seeing us go through assessments.As it was mum died at a time when I was very well and she never had to worry about Ben which is a great comfort to us.Karen.

 

 

[dee23]

Smiley, now i am smiling and have tears in my eyes!! Thank you for your kind comments, and especially for calling me positive when i have often felt anything but (stubborn maybe...!). I have noticed his packet of valium is never very far away from him, so i suppose that is an indication that he is serious about using it if need be. And you are absolutely right to say he is calmer for knowing help is on its way. He was so happy that the GP had taken the time to read his medical records and finally got the full picture, he feels he is at last being taken seriously. I will definately contact the nas, i have learnt from another thread here that i can email them, rather than use the phone helpline, and i think that will be easier to compose my thoughts, so i will do that.

 

You know, we knew we would be among friends here the first time we saw this...... !!!

 

I have seen so much love, humour and compassion on this forum, you are so supportive to each other and just never give up in the face of such difficulties, i am in awe of you all! I am so grateful for the kindness and help i have had, i hope i can do the same for someone else here someday.

 

xXxXxXx

[dee23]

Karen <'> <'> <'> to you too!!

[smiley1590]

Dee advice is nothing really from my personal experience i understand how important it is to be understood by society,family friends and often getting a official diagnosis helps this along! i'm in awe of you both!yeah you can email NAS instead of ring them up! anything but! dion't think so alex needs someone who stubborn yet strong minded and determined to do 'right' by him by supporting him all the way! with everything he may need where can't get that from his own mother at times he seeks guidance,comfort,reassurance from yourself! when his distressed or upset he seeks confidence and just being there gives him the will to carry on facing each day with whatever difficulties he may come across he isn't scared because you there every step of the way!

 

if i ever meet the equivalent of male person like you then i would count my lucky stars and be so grateful i'm understood and know them inside out everything and accept is truly amazing gift to give someone like us you give us freedom time patience energy! we need more people like you out there in this world to get us! our world and how we feel and think! as can be so confusing and frustrating but you break it down and make it easier that way! you seem so sympathic towards him! your brilliant and never forget the hard work and effort you put in to make this work and succeed for you both! to get the end result of hopefully official diagnosis for him and professional help and support!

 

have u looked into anxiety,depression PTSD too? researched information as could have ADHD,AS and other MH probs going on! ? just a thought that's all!

[smiley1590]

i'm glad they are at last taking his worries and concerns 'seriously' this matters should be dealt with years ago i know awareness and information wasn'ty around so much then but somehow it still failing that person and their life in whatever way you put it!does the doctor seems to understand ASD's? are the professionals have nice work practice towards you both? do you feel you finally getting somewhere as that what really counts!? hope you do!only taken years to notice that it affected his whole life!they do it right someday soon i do live and hope!

[smiley1590]

i would draft your email on paper rough first before you type to NAS as may make clearer and sounds right! only an idea suggestion!that's good his meds are near by him! lol i hope professionals see that both of you are worthy of help and support as affects you as a family unit main person is alex but you really his carer! if get diagnosis may able to get benefits such as DLA ,C.A! but the NAS can advice you more information on this!i glad doctor read the records and now seeing 'whole picture'! im glad he feeling calmer within himself! that what we hear for to help be kind and supportive! hehe LOL X sorry made you cry! X

[dee23]

Its funny thinking about all this. Ever since i was a small child i have wanted to understand people around me, what makes them tick. So i suppose if you go through life wanting to understand, life gives you something that needs understanding! If that makes sense....... He has some fantastic qualities, i have always found him funny - in a good way! - and he is still the person in the world who knows me best of all. He has always made me feel 100% accepted, i know what a gift that is, and i feel safe in saying that in 13 years i dont think he has ever lied to me, and that is quite something. I dont think he knows how. Of course, what that means in practice is that he has told me every little thing that has gone through his head including the sorts of things that i think most people hide in their relationships!! But then i never wanted to be most people anyway. I can feel my sense of humour coming back now, so thats an indication of how much things have calmed down......

 

Smiley, this society we live in can be so hard and unforgiving, i wish there could be more time and patience for everyone. We neuro typicals, i think thats the right term to use, have created a horribly unhealthy world in a lot of ways..... It is late now and i am feeling philosophical so i think i will log off before i find myself personally apologising for the state of the world!!

[smiley1590]

heya you thinking alex couldn't lie and wouldn't know how to is another ASD sign we very honest and literal! yet as you found out do have sense of homour though sometimes don't get the meaning of pure jokes! i'm glad your sense homour is coming back!yes society can be hard and unforgiving but in alot ways that why more awareness and understanding is needed from media publicity!

 

celebrities who know someone with an ASD like katie price(jordan) son harvey has severe heath problems but that is one of them! keith duffy, has a daughter with autism ,DJ talent has brother with severe autism in care home! ,mamma trish has 2 boys with autism! so more and more are being seen in limelight and the more this tends to occur more chance and opportunity we have to be understood and recognised that we not 'hidden away' quietly!

 

it good ale can be so open with you an trusts you so much to tell you everything going on his head as for someone with a spectrum disorder this can be so difficult task to undertake at times as get so wrapped up in confusion frustration etc emotions and thoughts of yourself you forget to share instead you shut down clam up and bottle everything inside which becomes unhealthy and damages your mental state!

 

you ever thought of studying pyschlogy understanding what actually makes people tick at college or unversity on a course!? it be interesting to find out i love to know too! think you'd well at it and you got head start with alex you then train to work supporting people with different needs like alex maybe!

 

i wish the world had more time and patience too it sad that has to be all our of war of looking after yourself and not caring as much about other people around us! i find that hard to accept and bear that FACT at times but just the way the world is at the moment hope it changes soon though doubt it will somehow you can live and hope pray everyday!

 

it great quality that you want understand people around you though!

 

 

[dee23]

Well, part two.... Things got much worse. He was having meltdowns all the time, ending up with him trying to stab himself in my kitchen, me trying to get the knife off him with one hand and on phone to 999 with the other. Unknown to me he had already made an appointment for gp that morning as he had felt wobbly so in the end he discharged himself from a&e and i took him to doctor. Doc was brilliant, and since then things have calmed a bit again. He is so tense all the time though, so much underlying anxiety. Anyway, alex had a gp appointment this week (which gp contacted him and made), and he asked me to go with him for support as he wanted to ask for a referral. He had seen MH team, been assessed for 90 minutes ( not specifically for AS), and their assessment was no mental illness, no depressive illness but that his traits were those found on the AS/ADHD spectrum. He had not mentioned the word aspergers to them, they had picked this up from his answers, so that gave him a huge boost in confidence to ask gp for a referral. I had been in touch with the nas, by email, and they replied on the day of the appointment. They had searched their database and come up with a clinic in southampton (we are near bristol), told doctor about this, after he had said there was nowhere to refer to in our area, and he has agreed to see if he can refer alex there! I am sure from his attitude that he will keep trying if alex cant go there. We walked out of the surgery and alex had such a big grin on his face! I could havve hugged the gp, he has, finally, become so supportive. He is also going to be contacting alex once a month to make a check up appointment. The clinic is called, i think, the Autism Diagnostic Research Centre. Does anyone know anything about it? Like i said though, he is so tense, more so than usual. He has been worse this year than he has for a long time. Could thinking he may have aspergers be adding to his anxiety? For a short time he felt calm, but then his anxiety has been coming back with a vengeance. He must be exhausted with it all, i know i am! He doesnt seem to have a very firm grip on any coping mechanisms at the moment. I'm worried he is going to end up in serious trouble before he manages to get proper help at this rate, he is still on the waiting list for gp counsellor, but until then he has no structured support.

[smiley1590]

sad it has to come this emergency mental health crisis!? is he seen as emergency case by gp counsellor waiting list!? it strange how once gets this docs can all of sudden jump into doing something mode how weird is that!? good that nnow bucked up his ideas and realised something needs to be done for him! no-one deserves to experience this sufferer or partner! has he been given anti-anxs meds to take anything to calm him beens uggested to you both?? i been assessed by MH team they couldn't find evidence of depressive illness, pyschosis , etc just AS shining though and MH probs attached to having that in your life! i am exhaused after going through that situation does mentally drain and tire you emotionally where you have nothing left to give anyone for you both that apply for! maybe he needs you to 'gently' remind of his coping tips to help me get by for now! did they say how long you got to wait on this list to get help and support going for you??? as that help take some stress,pressure,anxiety off you both for abit? it's not hearing and waiting that drives you 'literally mad' i know how Alex gets to that point of meltdown and going to A n E up hospital and booking docs appointment! what made he want to stab himself is it frustration anger towards himself and others???did he say anything when trying to do this? can you get any sense of his mouth or does he just rant and rave and say anything? or does he say depressive/suicidal expressions? do you know when this going to step up to another level to this situation? took me ages to recover for my A n E suicidal/depressive stages! in way the situation was 'weirdly positive' as they found AS/ADHD traits in him! maybe he fed up of being himself and wants answers and scared trying to run from himself! maybe half him wants to know but other half doesn't! it good doc going to keep a regular check on things! if any things else serious dangerous occurs contact doc or A n E!

 

take care

XKLX

[Tally]

It's eally positive that the mental health team have picked up on the autistic symptoms themselves. I hope you can get an assessment soon!

 

I am shocked that they do not see any mental health issues in a person who is suicidal and waves knives around. A formal diagnosis of Asperger's isn't going to offer him any kind of help with this.

[NobbyNobbs]

the southampton ASD unit is one of the best in the country i think there are around 4 of these big research units in the country. its linked with the university and is a medical research unit so its got the best and most up to date methods (southampton uni is a big medical uni). i live 15 miles out of hampshire or i'd have been seen there. my ASD uni support worker came from southampton uni and she talked about the unit there, it sounds like a good place.

 

good luck with getting the referral accepted!

 

one point to make sure you raise is that since his assessment/diagnosis will be coming out of area what support will your primary care trust offer if a positive diagnosis is made. if there is no ASD specific service insist he is referred to the closest possible support service which will probably be mental health. it probably wont be possible for anywhere out of area to give him any sustained support. for example my PCT has allocated funding for 6 hours a week from a support worker to help me get out and about, plus 2-weekly meetings with a CBT therapist. the support worker is coming from an ASD charity, the PCT are paying them to provide it, so even if your PCT doesn't have the facility itself, they should pay for it to come from somewhere else!

Edited July 31, 2009 by NobbyNobbs

[Kathryn]

Dee - thanks for the update.

 

I hope the referral comes soon, keep pestering the GP. This must be so tough for you to deal with on your own. <'>

 

K x

Edited July 31, 2009 by Kathryn

[dee23]

"fed up with being himself....." think you got that right smiley. He has been on various meds lately, an anti anxs and a mood stabiliser, but has come off them both. He can't cope with the tiredness he always gets on meds, and the mh team said they didn't feel that either of the ones he was taking would do much for him. He has been keeping the gp informed of this though. I'm shocked too Tally, makes you wonder what someone has to do. If he does really hurt himself or get into serious trouble there will be this whole trail of glaring warning signs..... I find it is getting easier for me to separate his anxiety from his autistic traits, and that seems to be where this blind panic and rage is coming from. The anxiety has come to seem almost like another person who is constantly with him and keeps interfering in his life, if that makes sense. The gp tried to suggest that he use me as an early warning system, when he is with me, because i can see it coming almost before it starts. I know how his speech patterns change, his voice gets monotonous and his speech gets repetitive and weirdly clipped and jerky when his anxiety is taking over. We have so much "baggage" between us though that he can't really listen to me anymore, and he knows how utterly tired i am of coping with it so he gets defensive, on top of everything else. It is a fine and wobbly line between me helping and supporting him, and things being mutually destructive when we are together, which we try and cope with by spending a good chunk of each week apart. And i would imagine moving back and forth between my place and his work caravan isn't exactly good for him either...

 

Nobbynobbs thank you for the information, and the very helpful tips about pct funding. I am just so glad that the gp is on his side, and also thinks a referal will be a good idea.

 

I just want him to be able to stop being sick of himself! He is so good at what he does, has so much respect for it, and he can be wonderful company. He is just so anxious at the moment.

 

And Kathryn, i absolutely love your Beckett quote..... my philosophy exactly

 

Thanks again for all your replies and support <'>