Aspergers/ASD support thread

shy-but-need-help

In my experience with adult mental health services (for myself) I have learnt very quickly that they expect you to prioritise your mental health above and beyond everything else, in other words they expect you and your family to be able to rearrange everything, move things and be at appointments regardless. They tend to see it that your mental health has to be the number one concern and if you're not meeting your needs in terms of treatment & staying healthy then keeping work/everything else happy if pointless. I am guessing that is why you met with the reaction to the appointment times, we have interactions with alot of services (2nd child has dyspraxia, ASD and a few other MH issues which are yet to be defined due to his young age and huge CAMHS waiting lists) and none of the other services are as inflexible as mental health ones, they are in huge demand, even more so the child and adolesent branch of it.

As for CBT my only guess is they took it as your saying your DD needed to change and needed help rather than as a whole family unit, they are very big on the entire family accepting behaviours need to be assessed to support the person with mental health issues rather than just fixing the client themselves. I've found the best way to deal with them is to ask what they feel the better cause of action is and THEN say "we've heard of X, Y, Z do you think this may be helpful" and then lead them to explain why or why not they feel it is, that way you're seen as asking questions rather than trying to direct them.

I am in my 30s and my psychiatrist & counsellor still expects my parents (I'm married with a large family of my own) and my sister to play a part in my treatment because although they can help my modify my behaviours, identify my triggers and learn to reduce my stressors they also need the family to acknowledge which of their behaviours have led me to have those stress responses (I am a people pleaser and my family have come to rely on me being the one to constantly compromise, apologise etc even when I shouldn't be the one to have to)

I hope you get the right help as a family, I have to admit I am gritting my teeth for the teens with our SN son- I'm fairly sure his MH issues are going to turn out to be bipolar like myself and it scares me how that will manifest with his other issues

MessyMare

They may have looked down on CBT as it is often seen as a sticking plaster- it deals with the here and now, rather than looking into why the here and now is the way it is, if you see what I mean. I have a dear friend who is a psychotherapist who absolutely cannot stand CBT, but know a lot of people who sing it's praises.

Allegra

shy-but-need-help wrote: »

In my experience with adult mental health services (for myself) I have learnt very quickly that they expect you to prioritise your mental health above and beyond everything else, in other words they expect you and your family to be able to rearrange everything, move things and be at appointments regardless. They tend to see it that your mental health has to be the number one concern and if you're not meeting your needs in terms of treatment & staying healthy then keeping work/everything else happy if pointless. I am guessing that is why you met with the reaction to the appointment times, we have interactions with alot of services (2nd child has dyspraxia, ASD and a few other MH issues which are yet to be defined due to his young age and huge CAMHS waiting lists) and none of the other services are as inflexible as mental health ones, they are in huge demand, even more so the child and adolesent branch of it.

I get that, yep. And DD's mental health is a priority to us, which is something we are quick to point out every time we beg for a bit of flexibility - and it was certainly a priority to us for two months after her numerous suicide attempts, when we kept facing brick walls asking for help, before help was finally offered. She is, incidentally, still on the waiting list for the protective behaviour workshop, which we were told would be a priority when she was seen at the hospital.

Having said all that, we did eventually get an appointment time offered that is less difficult for us, we just got a telling off about it So we are grateful for that.

I guess that trying to point out to anyone at CAMHS the detrimental effect that me or my OH losing our jobs and being unable to pay the mortgage would have on DD's mental health is a no go.... better keep that particular worry to ourselves, then.

As for CBT my only guess is they took it as your saying your DD needed to change and needed help rather than as a whole family unit, they are very big on the entire family accepting behaviours need to be assessed to support the person with mental health issues rather than just fixing the client themselves.

And that theory actually makes perfect sense of their reaction now ! Thanks for that - I really should have thought of that myself, but when you haven't slept in two months because a slightest noise springs you wide awake thinking your daughter is trying to kill herself again, the old brain kinda ceases to work in a very efficient manner.... :rotfl: And that makes perfect sense of the "two to tango" comment, too. What the heck is wrong with simply saying "I'm sorry, but you are giving out an impression that you think that your daughter is faulty and needs to get fixed, whereas actually the only way to resolve her issues is for all of you to support her as a family", eh ? Then we could have said "Oh, but of course we want to do that, and will, we just heard a lot of good things about CBT and ASDs, and were wondering if that might be something that could be considered going forward..."

Seriously, it does worry me that someone who seems to speak exclusively in metaphors might not be the most appropriate person to deal with an Aspie. It does not seem to have occured to anyone else that this might be an issue though.....

I've found the best way to deal with them is to ask what they feel the better cause of action is and THEN say "we've heard of X, Y, Z do you think this may be helpful" and then lead them to explain why or why not they feel it is, that way you're seen as asking questions rather than trying to direct them.

That sounds like something we need to adopt going forward. We really can not afford to waste any more time alienating people that are supposed to be helping.... Not that we realised that's what we were doing !

I am in my 30s and my psychiatrist & counsellor still expects my parents (I'm married with a large family of my own) and my sister to play a part in my treatment because although they can help my modify my behaviours, identify my triggers and learn to reduce my stressors they also need the family to acknowledge which of their behaviours have led me to have those stress responses (I am a people pleaser and my family have come to rely on me being the one to constantly compromise, apologise etc even when I shouldn't be the one to have to)

Are your family happy to do this and support you in that way ? If so, you are very, very lucky

I hope you get the right help as a family, I have to admit I am gritting my teeth for the teens with our SN son- I'm fairly sure his MH issues are going to turn out to be bipolar like myself and it scares me how that will manifest with his other issues

Thanks hun - and thanks for taking the time to reply, it was very helpful to me in trying to make sense of it :A I will keep my fingers crossed for you and yours, too.

londonlass001

shy-but-need-help has made many of the points I would've so won't repeat what's been said. I read your post with two hats; I'm a mh professional although work in adult mental health and my 19 year old nephew has aspergers and anxiety/depression.

On the CBT issue, CAMHS teams invariably take a whole family approach and whilst you can include family members in a CBT approach, the underlying philosophy is that it individualises the 'problem' e.g it is your daughter that has 'the problem'. Family therapists, sometimes called systemic therapists, have a completely different philosophy which is at odds with CBT (there are different family therapy approaches which alter the therapy received). They are generally more interested in relationships and try not to problematise either the child or the family. It may be that you've come across a team who have chosen to embrace a more systemic approach.

The other issue is that for a long time cbt was not thought to be suitable for people on the autistic spectrum due to difficulties they might have with engaging with their own thoughts, feelings etc. I haven't seen much recent research on this as it's not my area (what do the NICE guidelines say) but I would imagine they might not feel equipped to go down this route or indeed have the skills to do this work. It also depends on the focus of the work, cbt practitioners often work in a diagnosis specific way so cbt for depression or eating disorders.

Lastly, it isn't unheard of for people to be seen for individual and family work but it is fraught with difficulties particularly that any form of therapy is painful so too much therapy might prove destablising for your daughter.

As a relative of someone who has struggled through his adolescence, I have seen the distress it causes to the whole family. My sister relies on me for support and it has impacted on her mental health too. My nephew has had some contact with camhs which was a waste of time. Despite my sister being very knowledgeable about Cbt and asking his therapist about it, the therapist poo pooed the idea as my nephew was 'too young'. When this was challenged, it turned out that the therapist had no idea how old my nephew was. Not all camhs teams are like this though, many are trying their hardest but sometimes forget or have no real understanding of how you are feeling.

Whether this contact will be useful for you is not yet known. Perhaps if you feel able to, ask for an explanation about the cbt. I would also find out if there are any carers support groups/services locally so you can connect with other parents going through similar. I wish your daughter and family all the best.

Allegra

ColleenPamela wrote: »

They may have looked down on CBT as it is often seen as a sticking plaster- it deals with the here and now, rather than looking into why the here and now is the way it is, if you see what I mean. I have a dear friend who is a psychotherapist who absolutely cannot stand CBT, but know a lot of people who sing it's praises.

Interesting you should say that, beacuse that's actually how I feel about what is being done for DD at the moment - a sticking plaster because there is no more appropriate care available. Furthermore, it makes me all the more convinced that CBT would probably be a more appropriate course of action for DD - because we already know why the here and now is the way it is - it's because she is autistic. And what we need is help in teaching her in how to deal with it.....

And the further I delve into this, the stronger my feeling that the current approach is not the best one. Still, the counsellor did say that, if she feels, after getting to know DD, that she is not the best person to help, then the case will be taken back to the team and referred to a more appropriate person. Let's hope that this does not take too long, and that it does not mean another half a year on a waiting list !

In the meantime, family counselling - assuming we do not have to quit our respective jobs in order to be able to attend it - will at the very least achieve the goal of putting us all into a room together, talking to each other, which then might encourage DD to do a bit more of that at home, helping her to start feeling a part of something, and not quite as disconnected as she is now. So as a sticking plaster, there could be worse ones, I guess

Could be worse, I have to keep saying this to myself. It could always be worse.

Thanks for taking the time to reply, ColleenPamela

Allegra

londonlass001 wrote: »

shy-but-need-help has made many of the points I would've so won't repeat what's been said. I read your post with two hats; I'm a mh professional although work in adult mental health and my 19 year old nephew has aspergers and anxiety/depression.

On the CBT issue, CAMHS teams invariably take a whole family approach and whilst you can include family members in a CBT approach, the underlying philosophy is that it individualises the 'problem' e.g it is your daughter that has 'the problem'. Family therapists, sometimes called systemic therapists, have a completely different philosophy which is at odds with CBT (there are different family therapy approaches which alter the therapy received). They are generally more interested in relationships and try not to problematise either the child or the family. It may be that you've come across a team who have chosen to embrace a more systemic approach.

The other issue is that for a long time cbt was not thought to be suitable for people on the autistic spectrum due to difficulties they might have with engaging with their own thoughts, feelings etc. I haven't seen much recent research on this as it's not my area (what do the NICE guidelines say) but I would imagine they might not feel equipped to go down this route or indeed have the skills to do this work. It also depends on the focus of the work, cbt practitioners often work in a diagnosis specific way so cbt for depression or eating disorders.

Thank you for the explanation My research (which was purely through books and journals on ASDs, nothing else) indicated that CBT has actually met with considerable success in people with ASDs, whereas "traditional" psychotherapy has met with very limited success (and the reasons given for that is that the "traditional" approach (for want of a better word, not really sure what the correct way to call it would be) expects too much interaction with one's own feelings etc.). It is really good to hear an MH professional's perspective, and this does make it a bit more understandable why we met with such a negative reaction when suggesting it.

As for the bit in bold, this also makes perfect sense in this context - this is the second time around that DD has been to CAMHS; the first time was when she was diagnosed with AS and dyspraxia, and rather than recieve any actual help for her problems at the time, all she got was a label and we were told that they do not do any work with people with ASDs and the only help available was a parenting course. In other words, this is what the problem is, live with it.

So, of course, we did our best..... But when it came to EDs, self-harm and suicide attempts, thats' when it becomes clear that our best quite simply isn't good enough, and further help needs to be sought. Except that CAMHS is the only help there is, and they already said that they can not help. Which is encouraging.

And which is why it feels rather than anything ebing done now is just pro forma, so if the worst comes to the worst, it can't be said that they did nothing.

Or maybe - hopefully - it's just me being uncharacteristically negative, due to sheer exhaustion.

Lastly, it isn't unheard of for people to be seen for individual and family work but it is fraught with difficulties particularly that any form of therapy is painful so too much therapy might prove destablising for your daughter.

That is actually what I fear right now - what the situation appears to be at the moment is that the individual counselling will continue, but family counselling will be added on to it. It's like no one is sure what caused the fire so they are pulling out every extinguisher known to humanity and spraying every toxical chemical on in hope of putting it out (if talk in metaphors we must, might as well go the whole hog ), and consequences be damned.

As a relative of someone who has struggled through his adolescence, I have seen the distress it causes to the whole family. My sister relies on me for support and it has impacted on her mental health too. My nephew has had some contact with camhs which was a waste of time. Despite my sister being very knowledgeable about Cbt and asking his therapist about it, the therapist poo pooed the idea as my nephew was 'too young'. When this was challenged, it turned out that the therapist had no idea how old my nephew was. Not all camhs teams are like this though, many are trying their hardest but sometimes forget or have no real understanding of how you are feeling.

Whether this contact will be useful for you is not yet known. Perhaps if you feel able to, ask for an explanation about the cbt. I would also find out if there are any carers support groups/services locally so you can connect with other parents going through similar. I wish your daughter and family all the best.

I have just found that a colleague at work is going through the almost exact same thing with her 11 year old son, and just knowing that you are not the only one makes a huge difference, even if there isn't anything that either of you can actually do to practically help each other. So, very sound advice, and thanks so much for taking the time to reply.

Errata

I think you have to accept that your suggestion of CBT based on your understanding of it through doing a bit of research as a parent was turned down because the people in the meeting have collectively donkey's years of experience, training and knowledge in therapeutic techniques, and a deep understanding of what will be effective and what won't.
Your daughter has very serious life-threatening health problems. If she had a serious heart problem that needed treatment every week at 2pm, would your response be that time wasn't convenient and you wanted it changed?
I sense that you're very angry. The people trying to help your daughter and the family are trying to help. That's their job. If you don't like the help on offer - tell them.

Molly41

Instead of focussing on CBT have you tried Mindfulness? It is being used with great success and I practice it with my DD in particular as she gets very stressed?
http://www.dbtselfhelp.com/index.html

We had Family Therapy a few years ago when my youngest son had a chronic pain problem. The thing that I realised that all families - even those who appear to be well organised and coping - are dysfunctional at some point and at different times, particularly in times of stress. Its what makes a family a family. Obviously its a case of balance but I wouldn't see it as a criticism. In a way though it is important to put your DD first for a set period of time, put her before work. If necessary invoke the carers responsibility that work have to give you the time off for a set period of time.

Allegra

Errata wrote: »

I think you have to accept that your suggestion of CBT based on your understanding of it through doing a bit of research as a parent was turned down because the people in the meeting have collectively donkey's years of experience, training and knowledge in therapeutic techniques, and a deep understanding of what will be effective and what won't.

I think I have not explained this properly The people in the meeting were the school's deputy head, the school's SENCO, the school nurse, the ASD team worker that has been working with DD at school since about January, and the CAMHS counselor. So, collectively, they have donkey's years of experience in dealing with young people, which is why we are intensely grateful to have them onside and working together to help my DD - that was, after all, the point of CAF - professionals working together in order to help a young person.

Thus far, though, all the meetings we have had regarding DD - and there have been many - have only involved various members of the school staff and the ASD team worker, and we have had absolutely no reason to doubt or challenge their judgement. In fact, their help every step of the way has been invaluable, and I feel that their continuing involvement in DD's welfare will be the most useful thing in helping her deal with her difficulties, and in helping us support her through them.

We have, however, both through our previous dealings with CAMHS, and through the ASD team worker, been warned that our local CAMHS does not have much experience with young people with ASDs and that they are often very wary of helping them with their mental health problems, which was the main reason that the ASD team initiated CAF, because they feel that the best, if not the only way, of supporting an ASD youngster with mental health issues is for both services to work together.

Now, as for CBT, I would be very happy to accept that my understanding of what it can achieve in my daughter's case could be wrong - I just do not understand, for the life of me, why hostility to the suggestion - both from the CAMHS counselor and the school staff, but NOT from the ASD worker - was an appropriate reaction, rather than an explanation as to why the suggestion was inappropriate, and how their suggested course of action is better instead.

Frankly, the only explanation so far that made sense of this was that what the people in the room heard was us saying that we want DD "fixed" without us being involved in any way. That is a million miles from the truth, and we need to make this very clear in future meetings - if it wasn't for the input of kind people on here, we'd just not know to do that, as it would not occur to us that anyone might think that !

This is really why I am seeking opinions here, to help me understand this, so when I go into a next meeting, I do not waste their valuable time by flapping about the issue; so I ask the right questions; and so I don't come across as petulant and combative, as that's hardly gonna be helpful

Incidentally, in terms of expertise, I will freely admit that I am not an expert in mental health, ASDs, or education, which is why I will always make a point of consulting the experts on all those issues; but I am an expert on my DD, and I expect any professional dealing with my DD to make a point of consulting me whilst they at it. I just wasn't sure this was being done here. I hope to God this is just my perception that will prove to be unjustified and wrong.

Your daughter has very serious life-threatening health problems.

Tell me about it.....:(

If she had a serious heart problem that needed treatment every week at 2pm, would your response be that time wasn't convenient and you wanted it changed?

No, but that was not my response here, either. I asked if there was any chance that it could be, and I would have done the same regardless of what the problem was, if there was any chance that this might make our lives a little bit easier and less traumatic. If I was told no, this is not possible, I'd have accepted it graciously and dealt with the resulting fallout elswhere best as I could - and I would have done the same here, if that was the case.

Of course, if it was a heart problem, getting time off work would be far easier - people understand heart problems, they have more trouble with mental health problems.

I sense that you're very angry. The people trying to help your daughter and the family are trying to help. That's their job. If you don't like the help on offer - tell them.

I didn't think I was angry Confused and upset, I think. Not so much any more though - understanding always helps being able to deal with things better And you are right, they are all trying to help, and I must never lose sight of that.

But we are also trying to do our best, and they should not lose sight of that, either. We might be misguided or misinformed, in which case it should not take much effort to set us straight - but we are not malicious or neglectful.

Anyways - thanks for taking the time to reply I liked your input, it made me marshall my thoughts and attempt to make them more coherent, which is always A Very Good Thing

Allegra

Molly41 wrote: »

Instead of focussing on CBT have you tried Mindfulness? It is being used with great success and I practice it with my DD in particular as she gets very stressed?
http://www.dbtselfhelp.com/index.html

Thanks Molly, I'll have a look at that when I get a moment, and if it seems sensible, I am totally open to trying

We had Family Therapy a few years ago when my youngest son had a chronic pain problem. The thing that I realised that all families - even those who appear to be well organised and coping - are dysfunctional at some point and at different times, particularly in times of stress. Its what makes a family a family. Obviously its a case of balance but I wouldn't see it as a criticism.

I understand absolutely, and have no problem with the idea of a family therapy. As I said, anything that gets us all in a room, together, talking, must be a good thing What I objected to is the way this was not mentioned by the CAMHS counsellor until we mentioned CBT, and then it was "no, actually, this is what you need, because it takes two to tango, you know". I understand now that what she heard was probably "DD is the problem" and retaliated with "no, you all are", lol. I think both parties were probably guilty of expressing themselves badly, and I very much hope that in the future the communication can be more effective

In a way though it is important to put your DD first for a set period of time, put her before work. If necessary invoke the carers responsibility that work have to give you the time off for a set period of time.

And this is where I am, once again, guilty of expressing myself badly, misrepresenting myself, and selling myself short I accept that this is how I must have come across, as both the CAMHS counsellor and now people on here seem to think that I am putting work ahead of the welfare of my child. Which means that the fault is with the way I say it, rather than anyone else

To explain: I am actually extremely lucky with my work. I work in a library that is open 8am-10pm, and am on a nil hours contract, which means I can choose when I work, and I chose to work only the hours that DD is at school. I love my job, but would be equally happy if I didn't have to work - the work is means to an end, because the money I make means that the bills are paid on time, that DD can have her music lessons, that on the odd occasion when she expresses interest in trying a new activity, even if it is a horrendously expensive one like the most recent ones, horseriding and ballet, I can tell her to go for it without fearing if the mortgage would be paid or if we would have enough to eat. It also means that I can have all the school holidays off to be with DD, even if this is unpaid.

The only thing that my workplace requires in return for this flexibility is two weeks' notice if I am going to be off during the time that I am timetabled to work, and are justifiably annoyed if I do not do this. After all, most appointments, medical or otherwise, unless it's an absolute emergency, give you a bit more notice than that.

The main problem - apart from the loss of wages when I take additional time off - is that I do not drive, which means that anywhere that we can not walk or take the bus, OH has to take time off, too. And having a proper job, this is not always as easy as it sounds. Naturally, if there is no other way, then he will do this - and of course, when it comes to something like family therapy, he will also have to be present, and time will have to be taken off for that regardless. Which makes it all the more important not to abuse the goodwill of his employers if it is not absolutely necessary.

Now, DD has always known that we both work, that I only work part time so I can be home for her, and that working is very important because it means you can pay for whatever you need in life. She gets stressed and worried about pretty much everything, but us working has never been an issue - so yeah, I do object to someone who saw her once telling me that asking if there is any chance if we could get a different appointment (and there was, and I am so glad I asked !) means that I am "making her feel like a burden".

But, I must add that I will only object to it here, or in private It's not worth getting agitated about in front of the counsellor - I'd rather use the time and the energy discussing DD's welfare and strategies for helping her

Thanks for your post, Molly, and thanks again for that link, much appreciated