Aspergers/ASD support thread

Allegra

merlin68 wrote: »

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.

There isn't a separate reason as such, no. This is actually something that a lot of people, including MH professionals, seem to find hard to grasp (not a criticism, just an observation, and I do understand why that is!) - a lot of time is wasted to find out if she is being abused, or bullied, or any of the most common recognised causes/triggers. As I said, I do understand that this has to be done, because no one can take a chance that something like that could go undetected, so I have to grit my teeth and wait for everyone to cross things off their lists and finally consider if what I am telling them has any weight to it

The reason for her self-harm - and self-hatred - I do believe to be caused by her ASD, particularly by the fact that she is very intelligent, and - words usually used in connection with her diagnosis - high-functioning, and mildly affected. As she is growing and developing, she is becoming more aware of the people around her, but her own self-awareness is not developing at the same rate. As a result, she can see that she is very different from other people, but she does not understand why, or can not see any positives in it. Because she does not have that understanding, she can not see a why to deal with it, so she punishes herself for "being useless and hopeless".

There is also another element to it, and that is the fact that many people on the spectrum do not really feel things like pain and discomfort in the way that NT people do - when she cuts, it feels nice, rather than painful. That is why she is very angry with me for not allowing her to do this, not understanding (and not really caring) that the reason for this is because once she has a blade, she is out of control, and I do not want her to kill herself.

And then add to this the fact that she is constantly under horrendous stress (although she is unable to recognise this, she only knows she "feels bad", but does not know why) because everything that is expected of a young girl her age is massively more difficult for her than it is for her peers - starting from getting up when she is not ready, to having to catch the bus by a certain time, having to deal with PE kits and musical instruments on certain days, being moved around to different seats in class, musical instrument lessons cutting through different lessons and having to deal with leaving and returning to the lesson with a differen teacher each week, having to grasp the homework instructions and write them down, having to do the homework when she is really too mentally and emotionally exhausted by the end of the day.... And that's just the tip of the iceberg. And then she looks around, and everyone has to deal with the same things, and no one finds it a problem.

It's horrendous. I'd wanna kill myself if my every day was like that, with no hope of reprieve (which is very much a case in her mind, as "only 4 more years of school" just has no meaning to her - you might as well say "only 4 more millenia"). And the only way to deal with this, in my humblest of humble whatsits, is to provide as much support as is possible in dealing with day-to-day (which is already the case, but hampered by the fact that the support has to be unobtrusive in order not to damage her self-esteem further), and helping her develop understanding of her condition (which is currently under way through the work she is doing with the ASD team), as well as developing skills to - well, to deal with life. To develop perspective, be able to recognise positives, just generally make her outlook on life a bit sunnier. That is where we were hoping that CAMHS would come in....

I hope your daughter is OK now

blue_monkey_2

Flyboy152 wrote: »

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.

Well, I am not on a hiding to nothing, my son will get the follow up appoinments to ensure the medication is working properly and that it is not affecting him. His school are very supportive anyway and already treat him as a child with special needs as they were at the meeting when they told me his diagnosis. And this has nothing to do with what the doctor has said, the doctor has apparently 'forgotten' to mark on his notes she said he had ASD.

All I want out of this is for my son to be monitored, I am not doing this for the LEA so I am not sure why that was there, I am doing this so he can be medicated and monitored properly.

I am perfectly happy to pay so that he gets continuity of care (something we have NEVER had on the NHS) but I think it shocking we should be having to pay at all - we are lucky that we can afford to, what about the other parents that have been left in this way. Any child given any long term medication should be monitored, I get more monitoring with my asthma than he does with his ADHD medication!!

The doc we are registered with is currently sh!!ting herself because she knows he has not been monitored (in fact, the people I told who took it up with her, she told them I was a liar!!) well, she called this morning and asked to see him this week (which I cannot make as it is so short notice). Funny, a few weeks ago she was too busy to see him at all....

System

Flyboy152 wrote: »

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.

when my dd was statmented the panel asked if i had paid for any of the reports [i hadnt] because they do view them differently as the parent is paying for a particular outcome [their words not mine]

Flyboy152

blue_monkey wrote: »

Well, I am not on a hiding to nothing, my son will get the follow up appoinments to ensure the medication is working properly and that it is not affecting him. His school are very supportive anyway and already treat him as a child with special needs as they were at the meeting when they told me his diagnosis. And this has nothing to do with what the doctor has said, the doctor has apparently 'forgotten' to mark on his notes she said he had ASD.

All I want out of this is for my son to be monitored, I am not doing this for the LEA so I am not sure why that was there, I am doing this so he can be medicated and monitored properly.

I am perfectly happy to pay so that he gets continuity of care (something we have NEVER had on the NHS) but I think it shocking we should be having to pay at all - we are lucky that we can afford to, what about the other parents that have been left in this way. Any child given any long term medication should be monitored, I get more monitoring with my asthma than he does with his ADHD medication!!

The doc we are registered with is currently sh!!ting herself because she knows he has not been monitored (in fact, the people I told who took it up with her, she told them I was a liar!!) well, she called this morning and asked to see him this week (which I cannot make as it is so short notice). Funny, a few weeks ago she was too busy to see him at all....

I certainly did not mean to give the impression that your son would not have the best possible care and I apologise if that is how it came across. I was just that it will be an uphill struggle to get a LEA/Child Services department to recognise your choice of professional as being accredited, in order for them to accept their diagnoses or recommendations.

Flyboy152

CHRISSYG wrote: »

when my dd was statmented the panel asked if i had paid for any of the reports [i hadnt] because they do view them differently as the parent is paying for a particular outcome [their words not mine]

They will even take that view, if the same doctor produced the same report (one which they would accept), but under the auspices of the National Health Service.

blue_monkey_2

Flyboy152 wrote: »

I certainly did not mean to give the impression that your son would not have the best possible care and I apologise if that is how it came across. I was just that it will be an uphill struggle to get a LEA/Child Services department to recognise your choice of professional as being accredited, in order for them to accept their diagnoses or recommendations.

It's OK, maybe I read it wrong.

I see what you are saying now though but doubt it tbh. Her NHS base is in the next hosital down the road from our 'local' She is their paediatrician but also works privately (a lot of them do from the list I have seen!!). I have googled her to see if she has come up on any forums but no, she seems 'clean'. LOL.

If they are disregarding her reports though, then they would for all of the other children she sees on the NHS under the same LEA. Does that make sense? This is why I chose her, because of her job and where she is based.

I really am not doing it for the LEA though - I am doing it for him because he deserves more than the treatment he has been receiving for the last 4 years. It is frustrating for me to deal with a raft of different locums and doctors, let alone for an ASD child who does not know just what doctor he is going to see today. One doctor even held him down to measure him and he was screaming.

And the doctor we have now usually invites the senco and does the whole appointment with them there. I had to give my entire life history (and it was not good, I did not have a good start life and I did not even tell her everything!!) in front of both of them while they gave each other embarrassed looks. Now they say things like 'you are doing really well considering your background and start in life' and it really irks me. All of that should have been private between me and the doctor, not for the teachers to hear and talk about back at school. :mad: I could go on, there is lots more, but I;ve had enough really.

blue_monkey_2

CHRISSYG wrote: »

when my dd was statmented the panel asked if i had paid for any of the reports [i hadnt] because they do view them differently as the parent is paying for a particular outcome [their words not mine]

It is not why I am doing it Chrissy, but IF I do, I will also have my complaint to the PCT and my MP to back up WHY I have had to pay for the treatment/report. Also, I'll not just be getting the one report, I will be going back at least every 3 months for follow up reports with her and to have my son monitored properly, it is not just a one off for me. I want a doctor I can go and see if I have an issue, and one that calls me back when they promise they are going to. if she is 'the right one' for us then she will be my son's doctor indefinately. Just that I am paying for her services instead.

I have not finished with the paediatrician yet! The 'professionals' walk all over parents. I have given them the benefit of doubt too many times now and now it is time to stand up for the children - who need us to talk for them. If it means other kids are not left like this then it will be worth it.

We was referred to the ADHD Nurse and CAMHS almost 3 YEARS ago - and we have never heard a thing from them.

Ooooooh :mad: you have me on a tangent now. Sorry.

Flyboy152

blue_monkey wrote: »

It's OK, maybe I read it wrong.

I see what you are saying now though but doubt it tbh. Her NHS base is in the next hosital down the road from our 'local' She is their paediatrician but also works privately (a lot of them do from the list I have seen!!). I have googled her to see if she has come up on any forums but no, she seems 'clean'. LOL.

If they are disregarding her reports though, then they would for all of the other children she sees on the NHS under the same LEA. Does that make sense? This is why I chose her, because of her job and where she is based.

I really am not doing it for the LEA though - I am doing it for him because he deserves more than the treatment he has been receiving for the last 4 years. It is frustrating for me to deal with a raft of different locums and doctors, let alone for an ASD child who does not know just what doctor he is going to see today. One doctor even held him down to measure him and he was screaming.

And the doctor we have now usually invites the senco and does the whole appointment with them there. I had to give my entire life history (and it was not good, I did not have a good start life and I did not even tell her everything!!) in front of both of them while they gave each other embarrassed looks. Now they say things like 'you are doing really well considering your background and start in life' and it really irks me. All of that should have been private between me and the doctor, not for the teachers to hear and talk about back at school. :mad: I could go on, there is lots more, but I;ve had enough really.

You'd think, but there seems to no rhyme nor reason to the logic applied. When we were going through the assessment stage for Flyboy12, we got to the stage you have and came to a similar conclusion. However, when we submitted the first report, we were told that the doctor's work was not NHS accredited. Upon hearing this, the doctor submitted the same report on NHS headed paper and it was accepted. :huh: Go figure. However, he did experience some negative attention for doing this, but we kicked up a stink about the lack of consistency in their approach to reports and it seemed to grease the wheels a bit and Flyboy12's assessments were speeded up.

Savvy_Sue

blue_monkey wrote: »

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.

Yes. Although you might not get the full works, if it is thought that the full works might be damaging to the patient. Or if the full works name other people whose names have to be removed for confidentiality reasons. I don't know anything about getting reports on behalf of a child, however.

You may be charged, but there's a limit to how much they can charge.

Allegra wrote: »

The reason for her self-harm - and self-hatred - I do believe to be caused by her ASD, particularly by the fact that she is very intelligent, and - words usually used in connection with her diagnosis - high-functioning, and mildly affected. As she is growing and developing, she is becoming more aware of the people around her, but her own self-awareness is not developing at the same rate. As a result, she can see that she is very different from other people, but she does not understand why, or can not see any positives in it. Because she does not have that understanding, she can not see a why to deal with it, so she punishes herself for "being useless and hopeless".

This makes perfect sense to me, if it helps, and IS recognised by some professionals - hopefully you'll find some soon!

When DS1 was semi-diagnosed by the school doctor, I said to a friend "They think he's got Asperger's", and he said "What's that?" So I told him, and he said "I'm one of those, aren't I?" And yes, he is, very definitely!

Anyway, the school doctor had said that while DS1 had got on OK up to now, he might start having problems when he became a teenager, because he might want to be like other people and find it a struggle. And my friend confirmed that for a while he'd been completely miserable as a teenager, because he DID want to be like other people, and tried really hard to fit in, but he just couldn't do it. So he'd decided to stop bothering, and immediately became a lot happier.

Fortunately for us, DS1 never really wanted to be like other people, and TBH his friends make him look completely 'normal', whatever that is!

Allegra wrote: »

And then she looks around, and everyone has to deal with the same things, and no one finds it a problem.

Well, of course, as adults WE know that's not true, WE know that other children ARE finding it a problem, and some of them will be self-harming etc, but that's not a lot of help to her, is it?

Allegra wrote: »

To develop perspective, be able to recognise positives, just generally make her outlook on life a bit sunnier.

Yup, perspective, positives, not always the easiest of things to get in life with AS! It's all so Black and White. The teachers who said he was clever and doing well at school were lying, you know. I never did work out why they would do this, and he certainly couldn't tell me!

I don't know if it helps to know that at least one other person - albeit not a professional - can most definitely see where you are coming from.

Allegra

elfen wrote: »

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.

Funnily enough, when we went for DD's "triage" appointment with CAMHS, much was made of the fact that, as in CPN's, they have a home visit/out of hours team that can help if getting DD to places is an issue (which we were quite frank at the time that it might be an issue, mostly because of DD's reluctance to attend appointments out of home). As with so much, it exists, but the demand is far greater than supply. Her talking freely without me does not sound rude at all, but it's not an issue, either - in all our meetings with mental health professionals, we were always seen briefly as a family, and from then on her on her own. Unfortunately, if a person is not skilled in communicating with someone on the spectrum, they tend to get a completely wrong picture, because we have not been given a chance to speak to the MH professional in private, and we can not even touch the tip of the iceberg regarding her problems in her earshot. We also have to give the impression we are coping, which is not necessarily the case

She is also seeing the ASD team professional and an LSA (that is going to be her school keyworker) on her own for weekly sessions. There is much more balance in those sessions - and they have proved immensely beneficial - as we are regularly updated via notes, email, and meetings where we can speak without her listening in. I think now that CAF is under way we will have to rely a lot more on the ASD team person to update the CAMHS person on the real situation - at least they are listened to as an expert, not a "mere parent"

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.

Not mad at all - you are absolutely right, she will find a way. Which is why keeping dangerous stuff out of reach is only first aid of sorts, while the protective behaviours and - we hoped - counselling will help with her NOT wanting to do it any more. And thanks for the advice Sadly, she never does want to come to me - I have only ever found out BECAUSE I was unobtrusively checking on her - or in the case of the time she tried to slash her wrists, because I went in her room to see if she wanted anything to eat, and there she was, covered in blood all over.

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.

We spend a lot of time together, but it's generally so she can talk and vent and shout at me, or because she wants help with the dreaded homework. In terms of actually doing stuff with me, the start of her most recent set of problems coincided with her starting to reject doing anything with me - as, you know, she is this cool, independent teenager now - or thinks she is supposed to be - and I'm just her stupid old mother Think Kevin the Teenager with self-destructive tendencies, and you'll be getting near the mark....

So yes, you are absolutely right, it needs to be on her terms. So I keep offering, and keep getting turned down, but really, I can be quite persistent, and she might just end up getting bored of saying "no" eventually