Aspergers/ASD support thread

Errata

Molly - the site you've provided a link for is for Dialetical Behaviour Therapy (DBT). DBT is a very different kettle of fish to CBT and as yet there are not many qualified practitioners.

Allegra - this is a highly regarded free online DIY CBT course http://www.llttf.com/ developed and supported by the NHS.

HTH

pinkcheshirecat

That sounds very hard on you all. I do hope you manage to get your daughter back on an even keel. Just a thought, as your dd is 14, could you apply for flexible working due to her additional needs? This may not be the answer, as it might not be practical or take too long to put in place, but I would have thought this'd be exactly the sort of situation where it might help. Hope u manage to get something sorted.xxxx

merlin68

Have you actually worked out what's causing Dd to self harm? Mine was caused by being bullied at school. Self harming isn't caused by autism, normally another factor would be present.

Molly41

Errata wrote: »

Molly - the site you've provided a link for is for Dialetical Behaviour Therapy (DBT). DBT is a very different kettle of fish to CBT and as yet there are not many qualified practitioners.

Allegra - this is a highly regarded free online DIY CBT course http://www.llttf.com/ developed and supported by the NHS.

HTH

If you had time to look properly at the site there are resource handouts that relate to mindfulness that anyone can us. I personally have used Mindfulness with my DD and it has been very effective, particularly in relation to her self-harming. In particular....
http://www.dbtselfhelp.com/html/elf_help.html
http://www.dbtselfhelp.com/html/flash_distress.html

Obviously it is best to take medical advice and i wasnt offering any just sharing a resource that I found useful.

elfen

May sound silly but with the Aspergers and other stuff may not only a CPN to allow your daughter to talk freely without you (sorry if it sounds rude but that may also be a help to her) DBT may be something to suggest as it deals with emotions and changing responses to/dealing with more the emotions - I've had this flagged up as a probable help (borderline PD with self-destructive tendencies) and from what I'/ve looked at on it, it may be a better help for your daughter.

The self-harm, I know this sounds mad, but if she is determined to do it in some form then she will find a way whatever. All you can do is be there for her, and make sure you have a first-aid kit/aware of when she has done it. Not as in checking on her, but seeing if she will come to you once calm and you can clean it up/bandage it/look after it together.

Also, do you do anything just you and her? Maybe go for a walk, or watch a film, or do your make up and hair just ot give her time so she's not constantly worrying about what's wrong and all the emotions, that she gets time to be with her mum and not have to worry. You might find that you come closer to the cause of it by letting her come to you in her own way.

Savvy_Sue

Allegra, I remember your previous posts about your DD, and I really hope that you start to make some progress. It is worrying when something that is 'urgent' takes so long to organise, and then when it starts to happen you still feel as if you're fighting the system!

blue_monkey_2

Just a quickie. We are now going private, I have had enough of this crappy system. I am paying £200 for the first appointment and a full report and I have found a specialist that deals with ASD and ADHD at a private hospital about half an hour from us, and it is £100 follow up. If we do not like her we'll find another. And another. Until we are comfortable with the doctor. We will then have continuity of care.

This was after they put my son on medication and in 15 months we have not had one fillow up. When I called to speak to them and ask when I would be getting another appointment, they told me the doctor 'did not have time to see him', I said his meds were not working they told me - over the phone - to give him an extra tablet and to call back in 2 weeks and let us know if it is working.

I've had enough. This private doctor will do the same as the NHS one, her reports bear just as much weight as the NHS ones.

There was a meeting yesterday between the doctor and the support group I go to who told her about my son and apparently the doctor was 'upset at the suggestion he had been left medicated and there is no way he would not have any support or follow up'. Disgusting - she calling me a liar as well. Not impressed.

Am I allowed to request a copy of his notes under the Freedom of Information Act. I'll go and ask that on another board as well actually.

blue_monkey_2

This link here will tell you all of the doctors, conssultants and specialists working in the field you are looking for: http://www.drfosterhealth.co.uk/

You choose the doctors name and it tells you where they work on the NHS and also where their private practices are and when they work. It also tells you in what field they specialise so you get to choose someone you think is appropriate. Sometimes you need a referral but just ring your doctor and ask them to do you a letter, they MAY charge though, but they will do one when you tell them you are exasperated with the NHS system.

Flyboy152

blue_monkey wrote: »

Just a quickie. We are now going private, I have had enough of this crappy system. I am paying £200 for the first appointment and a full report and I have found a specialist that deals with ASD and ADHD at a private hospital about half an hour from us, and it is £100 follow up. If we do not like her we'll find another. And another. Until we are comfortable with the doctor. We will then have continuity of care.

This was after they put my son on medication and in 15 months we have not had one fillow up. When I called to speak to them and ask when I would be getting another appointment, they told me the doctor 'did not have time to see him', I said his meds were not working they told me - over the phone - to give him an extra tablet and to call back in 2 weeks and let us know if it is working.

I've had enough. This private doctor will do the same as the NHS one, her reports bear just as much weight as the NHS ones.

There was a meeting yesterday between the doctor and the support group I go to who told her about my son and apparently the doctor was 'upset at the suggestion he had been left medicated and there is no way he would not have any support or follow up'. Disgusting - she calling me a liar as well. Not impressed.

Am I allowed to request a copy of his notes under the Freedom of Information Act. I'll go and ask that on another board as well actually.

I really wouldn't count on that. You need to get a commitment in writing from the LEA/Child Services first, that they will abide by this doctor's findings. Otherwise you are on a hiding to nothing. They will hide behind the old excuse that the doctor's diagnostic methods do not follow the guidelines laid down.

All doctors are under an obligation to disclose medical notes on request.

Allegra

pinkcheshirecat wrote: »

That sounds very hard on you all. I do hope you manage to get your daughter back on an even keel. Just a thought, as your dd is 14, could you apply for flexible working due to her additional needs? This may not be the answer, as it might not be practical or take too long to put in place, but I would have thought this'd be exactly the sort of situation where it might help. Hope u manage to get something sorted.xxxx

I'm not in a job where flexible working as it's normally understood is an option - it's a customer facing job, not an office based one. For all that, it is quite flexible on its own terms, so I appreciate that I am quite lucky OH has flexible working, but even with that, it is pretty much expected that you will give some notice as to when you will be in, and that you will be there during the core hours.

It's not really the be all and end all anyway, we'll manage as best as we can, as we always have done, and will not lose sight of the real priorities. The issue was really that we were told that we are damaging DD simply by asking if there are any alternatives available that would make the lives of all three of us a bit easier. I think the only way to deal with this in the future is a) grow a thicker hide b) keep calm even when you feel like screaming, and keep explaining your reasoning in the hope that it might eventually filter through.

The suggestion of flexible working really was a good one, though, and it might well help someone in a similar situation who could be reading this, so thanks And thanks for the good wishes, as well - and yes, it is hard, always has been, and probably always will be. We just have to keep soldiering on.... xx