Aspergers/ASD support thread

Allegra

Savvy_Sue wrote: »

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?

Indeed. Perception and attitude is everything, at times - if that can be directed on a positive path, you are home and dry....

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!

LOL. Yeah, I remember you saying that in the past, and I nicked it for talking to DD since. Oddly enough, she can not think of one single reason as to why they would do that, either. She did offer that they might be confusing her with someone else though, which I thought was quite good

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.

It does, greatly. You do start wondering if it is you, because it really can not be everyone else, now can it..... Well, it seems that sometimes it can.

A little coda to the whole CBT story - my colleague that is going through the same thing with her son reported the exact same experience with our local CAMHS. She did what I did, reading up on the issue, and CBT sounded like just what she needs. She met with a similar reaction, except she was not sent for family therapy as a result - wonder if that's because it was the mother, rather than the stepfather, who made the suggestion in her case.....

So, if someone else, based on their individual child's situation (and her kid's situation and mine are so eerily similar, it's hard to believe), based on the literature available, made the same conclusion (that CBT may be beneficial) then we really can not be such utter idiots we were made to feel when we suggested it.

But anyway, comparing the notes made us wonder if the case is simply that our CAMHS does not actually offer CBT, but for some reason they do not want to own up to it. Think that's a straight question to be asked next time - because if they do not offer it, then there really is no point in asking for it, and we will both have to look elsewhere.

Savvy_Sue

Allegra wrote: »

LOL. Yeah, I remember you saying that in the past, and I nicked it for talking to DD since. Oddly enough, she can not think of one single reason as to why they would do that, either. She did offer that they might be confusing her with someone else though, which I thought was quite good

Ah yes, I'd forgotten that one. And yes, I do repeat my stories and strategies, I know I do, but I can never remember when and where, so if it seems relevant I will say it again.

I think it's a good plan to check whether the CBT would be available, if they thought it was the 'best' option. However you may need to be sneaky, and ask what therapies ARE offered, as a general question, IYSWIM.

Allegra

Savvy_Sue wrote: »

Ah yes, I'd forgotten that one. And yes, I do repeat my stories and strategies, I know I do, but I can never remember when and where, so if it seems relevant I will say it again.

And so you should :T There is always someone out there who can be greatly helped by something that someone else uses yet they themselves have genuinely never thought about. I have always found other parents and people who have grown up with ASDs the best possible resource there is xxx

Sarahsaver

Allegra have you heard of EMDR therapy? http://www.emdr-uk.com/index.php
I have personal issues with talking type therapies as i think they just impact and prolong problems, EMDR is totally different. Have you considered part time school or home ed? My son has kind of fallen into part time school because his health is not good, but its not (yet) an official arrangement. He is athsmatic. It would be a major life change for us all but i would be willing to unschool/home educate if it comes to it.

Allegra

Sarahsaver wrote: »

Allegra have you heard of EMDR therapy? http://www.emdr-uk.com/index.php
I have personal issues with talking type therapies as i think they just impact and prolong problems, EMDR is totally different. Have you considered part time school or home ed? My son has kind of fallen into part time school because his health is not good, but its not (yet) an official arrangement. He is athsmatic. It would be a major life change for us all but i would be willing to unschool/home educate if it comes to it.

Nope, never heard of it - thanks for the link, I shall investigate

I would consider home ed if all else failed, but luckily we are still a long way away from that (so I keep telling myself)....

How old is your son ?

Allegra

So frustrated by CAMHS.

Three years ago, we went to them with a list of concerns about DD. We were told - after a year of on and off appointments - that the reason for her difficulties was that she had an ASD and basically, to shut up and put up, cos there's eff all they can do about it.

Three years on, and we are back to them with what's basically the same list of concerns, except they have intensified to the extent that we are not really able to cope with them that easily on our own (nor is anyone else among the people concerned about her welfare), and now suddenly the reason for these problems is our poor parenting.

I was actually told yesterday that I would find it very helpful if I went away and learnt a bit about autism. It took me all I had to stop myself from replying "Actually, it would be very helpful if you did...."

Oh well. Onwards and upwards, eh ? Just needed to vent....

Flyboy152

Allegra wrote: »

So frustrated by CAMHS.

Three years ago, we went to them with a list of concerns about DD. We were told - after a year of on and off appointments - that the reason for her difficulties was that she had an ASD and basically, to shut up and put up, cos there's eff all they can do about it.

Three years on, and we are back to them with what's basically the same list of concerns, except they have intensified to the extent that we are not really able to cope with them that easily on our own (nor is anyone else among the people concerned about her welfare), and now suddenly the reason for these problems is our poor parenting.

I was actually told yesterday that I would find it very helpful if I went away and learnt a bit about autism. It took me all I had to stop myself from replying "Actually, it would be very helpful if you did...."

Oh well. Onwards and upwards, eh ? Just needed to vent....

Why didn't you, I would have. Flipping cheek.

But saying that (just get me tin hat on ), have you been in touch with The National Autistic Society. They can help with lots of things including helping you access services and help from your local NHS Trust and social services.




Apologies if I am teaching you how to suck eggs.

blue_monkey_2

Allegra wrote: »

So frustrated by CAMHS.

Three years ago, we went to them with a list of concerns about DD. We were told - after a year of on and off appointments - that the reason for her difficulties was that she had an ASD and basically, to shut up and put up, cos there's eff all they can do about it.

Three years on, and we are back to them with what's basically the same list of concerns, except they have intensified to the extent that we are not really able to cope with them that easily on our own (nor is anyone else among the people concerned about her welfare), and now suddenly the reason for these problems is our poor parenting.

I was actually told yesterday that I would find it very helpful if I went away and learnt a bit about autism. It took me all I had to stop myself from replying "Actually, it would be very helpful if you did...."

Oh well. Onwards and upwards, eh ? Just needed to vent....

We have had the same Allegra, my DS teacher is now writing a list of concerns as well, maybe they might taker her more seriously than me.

Out of frustration I found a private paediatrician who I paid to see and who picked up on his ASD right away, she wants to get his ADHD under control so she can see it, his ADHD is quite bad so is masking some of the symptoms. However, the meds were £100. My dilema is do I stick with this doctor caryy on going through the NHS to get the meds for free (a months supply was £100) and having a crap doctor who only wants to medicate his ADHD and is not interested in his ASD. This is why his teacher/SENCO said she would write a letter outlining his difficulties to see if that helps.

I cannot have both, it has to be either or. I am worried we might run out of money and not be able to afford the private doctor and then we'll have to be referred back to the NHS. This is my main worry and is the only thing stopping me going private totally.

We have an apppintment on Tuesday, 9 months late and we only got that because the support group I go to kicked up a stink, will see what that brings before I decide what I am going to do for the best.

Allegra

Flyboy152 wrote: »

Why didn't you, I would have. Flipping cheek.

But saying that (just get me tin hat on ), have you been in touch with The National Autistic Society. They can help with lots of things including helping you access services and help from your local NHS Trust and social services.




Apologies if I am teaching you how to suck eggs.

See, I don't mind that. Well-meaning advice, useful, does not assume that I would not have worked it out for myself, yet very good in case I hadn't.

Why can't a mental health professional do the same, eh ? Eh, eh, eh ??? (And this is setting aside the detail that I have demonstrated knowledge and familiarity with my daughter's condition in every meeting with this particular professional, whilst they.... Haven't.)

Reason I bit my tongue is cos I was previously told by this person that the way I spoke about certain things (out of my daughter's earshot) is likely a contributing factor to my daughter's disturbed behaviour as I am "making her feel like a burden". So I am now on my best behaviour just to check whether perhaps it really is me that is causing the friction in the communication with this particular individual.

I am almost completely convinced now that it isn't

What really intrigues me is how all these conclusions about how DD feels about me and my other half came about, considering that DD tells me that she has not actually been able to talk in these counselling sessions as yet (it takes her a good long while to be able to talk to someone new, and then it does really depend on the other person how long). P'raps she's psychic - DD did say she very much reminds her of Professor Trelawney from Harry Potter

OK, that makes me feel a bit better, now I can once again be an adult when next talking to the woman :A

Allegra

blue_monkey wrote: »

We have had the same Allegra, my DS teacher is now writing a list of concerns as well, maybe they might taker her more seriously than me.

Out of frustration I found a private paediatrician who I paid to see and who picked up on his ASD right away, she wants to get his ADHD under control so she can see it, his ADHD is quite bad so is masking some of the symptoms. However, the meds were £100. My dilema is do I stick with this doctor caryy on going through the NHS to get the meds for free (a months supply was £100) and having a crap doctor who only wants to medicate his ADHD and is not interested in his ASD. This is why his teacher/SENCO said she would write a letter outlining his difficulties to see if that helps.

I cannot have both, it has to be either or. I am worried we might run out of money and not be able to afford the private doctor and then we'll have to be referred back to the NHS. This is my main worry and is the only thing stopping me going private totally.

We have an apppintment on Tuesday, 9 months late and we only got that because the support group I go to kicked up a stink, will see what that brings before I decide what I am going to do for the best.

So tough I hope that the teacher writing does make a bit of a difference - I certainly found that CAMHS here take the school and the ASD support team far more seriously than they do the parents, which makes me intensely grateful that the school is so supportive, I know that for many people the school is the worst problem !

So yeah, now I tend to speak to the school/ASD support first and then let them talk to CAMHS as far as is possible. Still get intensely frustrated at times, as yesterday's post will confirm :rotfl: