Aspergers/ASD support thread

mandy.h_2

our lives sound so similar i to had to have counselling last year due to a sh****t upbringing and so being far to over protective towards my kids, i could not bring my self to give up work though that was brave i knew i could not do24/7 with ds no matter how much i loved him.i had a very good friend who looked after my kids while i worked and ds never actually got chucked out of school then not far from it now though.u need to find something for yourself to keep you sane do u not have as support group i go twice a week and they run a youth club must say we all as parent laugh and cry together it just started from a few parents who had no support from anywhere getting together. as for money for your hols have you ever had from family fund they have paid for our hols this year but you can ask for other things towards hold.

and always remember you can only do your best and others have not got a clue how your life is so tell them all to go and whistle i did and felt so much better for doing so especially my mother in law.

sarah1975uk

mandy.h wrote: »

our lives sound so similar i to had to have counselling last year due to a sh****t upbringing and so being far to over protective towards my kids, i could not bring my self to give up work though that was brave i knew i could not do24/7 with ds no matter how much i loved him.i had a very good friend who looked after my kids while i worked and ds never actually got chucked out of school then not far from it now though.u need to find something for yourself to keep you sane do u not have as support group i go twice a week and they run a youth club must say we all as parent laugh and cry together it just started from a few parents who had no support from anywhere getting together. as for money for your hols have you ever had from family fund they have paid for our hols this year but you can ask for other things towards hold.

and always remember you can only do your best and others have not got a clue how your life is so tell them all to go and whistle i did and felt so much better for doing so especially my mother in laws.

I didnt want to give up work but was a case of having too as at the time he got at his worst and excluded i had no child care for George to enable me to continue going to work the after school and holiday club refused to keep him on when he started flipping out big style when at his old school. I do agree i need another interest and outside stimulation other than my family and kids but dont know what to do for the best. As i have always worked i dont have a huge social network and dont have family now as cant cope with my mother treating me the way she does so will permenantly cut her out of my life now, for my own sanity and for my kids.

PasturesNew

Snaggles wrote: »

Goodness PasturesNew, I don't know what to say, other that I think you were very brave sticking at it - I would have almost certainly got back in my car and driven away.

After a lifetime of forcing yourself to go through things because you have to, it doesn't get easier, but sometimes you weigh up the pros and cons and still have to forge on. But it is tiring.

Snaggles wrote: »

I was just wondering, how would it be if you printed out your post above and took it to the doctors with you, along with maybe a list of the things you have difficulty with? We took a list with us, and I think the doctor took us more seriously because it was obvious we had thought about why we were there, rather than just arrive saying 'there's something different about our son'.

Yes, I must get a list together, I've got a mental list of about 1000 examples and experiences I can tie into the behaviours. That's how I "know". It's not just a few behaviours or problems. It's a lifetime of bad experiences that match exactly. Before I just used to know the end result of a bad experience, now I can identify the initial triggers, contributory factors and results.

Snaggles wrote: »

Is there anyone you could trust to encourage you to persevere if it takes a while? Although 2 years sounds crazily long, it might not take that long - and even it does, if it brings you some peace of mind, it might be worth it?

I really do wish you well - I can see so much of my son in you (oh dear, that sounds patronising, but it wasn't intended to be).

No. I don't know anybody. I only have one "friend", 200 miles away, who is now living with a partner. And she's an independent, successful businesswoman with serious health issues of her own. I certainly have never ever had anybody I could ever discuss these things with. I've never had anybody that is supportive. I've always carried my inadequacies buried deep inside me. To openly show the weaknesses that Aspergers brings would be a bad thing. I've always had to put on a front as far as I could. The problems came when I had to pretend to be "like everybody else", but simply couldn't (and didn't know why). The way I think has lead to most breakdowns in trying to form any friendships, so I've ended up having to isolate myself from people. I am nothing like others. I have nothing in common with them. When I am around others, the differences in the way I think, the way I do things and the way I live my life are glaringly obvious, so I am alienated.

I am, therefore, alone - apart from you lot. You lot are the only ones I have ever discussed this with. Nobody but people who know what it is can understand. If I tried to speak to anybody else, I think the general concensus is that it is something I can just snap out of it; but you can't think or act differently to how you do can you! Nobody can. A heroin addict cannot sit quietly in a library reading on a Saturday night; I cannot miraculously make and have friends, chat with them and go out clubbing. Conversation is based around what people have done/are doing and what they think; I've nothing in common and no experience of the sort of lives others lead. I'm different.

PasturesNew

carol9uk wrote: »

pasturesnew, my OH had trouble trying to get diginosed, the PCT paid for him to go to shefield. he is still waiting for help over a year. the NAS came round to see how they can how they can help and how much it will cost .

I don't understand the concepts of help and cost.
I don't see how either could or would apply to me.
I just want to know for sure, to be diagnosed, so I have a peg to hang it on.

At the moment if I am having problems, my only explanation can be "Yeah, I'm cr4p at this" and people would say "No you're not, do it again, try again" but if I have the peg, then I can say "Yeah, I'm cr4p at this, because of the problems I have with XYZ aspects; if I change it a bit I can have another go" and as you can label it and know how an adjustment could be made, people are happy to be supportive in that or leave you alone to do it your own way. Without that they can label you awkward ... and after years of being labelled awkward it's tiring. It's mentally exhausting dealing with the negative perceptions of others alongside your own issues.

e.g. I had a meltdown in a Doctor surgery a few years back, there were kids screaming and scrambling about. I went to see the Receptionist to find out how long it would be (in a state of severe anxiety) and she scribbled something down and I was sent in to see the Dr, who read the note. I think I was labelled "potentially a dangerous loony". But instead if I had gone in knowing, I could have identified WHY the noisy/moving/unpredictable kids were winding me up, I could have said to the Receptionist "I have ASD ... noise/anxiety ...." and she'd have been more accommodating to my needs rather than labelling me a potential psycho (well, that's how I've always felt I come across when I am in a meltdown).

PasturesNew

Js_Other_Half wrote: »

Pastures New - I think you did really well to get yourself to somewhere so stressful and alien. It's not your fault that the place isn't set up for face to face contact.

No, but it is theirs... this is the National Autism Society!!
They should know better.

All those do gooders in there... not giving a tinker's cuss for the real needs of people on the ASD scale!

PasturesNew

sarah1975uk wrote: »

I have a mortgage so cant claim anything for housing costs

Check that out - I believe there's a special rule for abandonment.
Ask on the benefits board.

I don't know about it as it would never apply to me (not with anybody in the first place to be abandoned; no kids; no mortgage) but in cases of abandonment you don't have to wait the usual 9 months - it pays out quite soon.

verysillyguy06

sarah1975uk wrote: »

I didnt want to give up work but was a case of having too as at the time he got at his worst and excluded i had no child care for George to enable me to continue going to work the after school and holiday club refused to keep him on when he started flipping out big style when at his old school. I do agree i need another interest and outside stimulation other than my family and kids but dont know what to do for the best. As i have always worked i dont have a huge social network and dont have family now as cant cope with my mother treating me the way she does so will permenantly cut her out of my life now, for my own sanity and for my kids.

You are not allowed to become negative! You a great mother and dont let anyone else tell you different. Make a list of at least 5 things that yiu are very good at and concentrate on that. Your husband misses out and just become very pragmatic.1. you have kept the children together, you have hit or shouted toon much 2. George is safe....you add the rest....http://www.youtube.com/watch?v=jHPOzQzk9Qo :lovethoug

seven-day-weekend

Sorry I haven't been on this board for ages - nothing to report I suppose, apart from a few mind-numbing monologues on the phone from my son. One was about Carpenter Bees I seem to remember and another about an American aircraft!:eek:

People here seem to be having a bad time, I wish you all well and hope that you all get the help and support you and/or your children need.

Pastures New, when I contacted the NAS about my son's supected AS, they told me it was virtually impossible for an adult to be diagnosed, but did send me a list of Drs that may be able to help. I'm quite happy to pm you these if you want. They were all in the Midlands however.

You were very brave going in there. Hope you are able to get something done.

Will keep up with this thread in future.

Savvy_Sue

PN, I don't know if it would help, or if you could even face working through the process, but you were doing a course weren't you? Being diagnosed through Uni is probably one of the most common routes for adult diagnosis.

DS1 has just been sort of re-diagnosed as almost an Aspie through Uni. At least that's the short way of describing it ...

For anyone who wants the long way:

When DS1 was 12 I was summonsed to see the school doctor and as we were talking I realised that it wasn't the family history of deafness she wanted to talk about. I asked if he had mild AS, and she said probably, but it would need full investigation before diagnosis. We were about to move, so she wrote a very helpful letter.

After we'd moved we saw the new school doctor and we agreed that as he didn't seem to need extra help we wouldn't bother with formal diagnosis. If he ever did need extra help we could go back. But the school knew he was probably Aspie, although I think they forgot.

Until he took his mock GCSEs, and despite obvious ability he did very badly in English. Teacher asked if there was a problem, DS1 said "I have AS", and teacher said "Let's see if we can get you extra time." So we went to see the GP, who wrote to I don't know who, and then we were back with the school doctor who had a little chat and recommended him for extra time. Which he then had for GCSEs and A levels, although he only used it in the touchy-feely subjects (like Engish!). All still without full investigation and formal diagnosis.

DS1 headed off to Uni, I spoke to the Student Support Services, and we agreed that since he didn't seem to need extra help or equipment and probably wouldn't need extra time in exams because he wasn't doing touchy-feely subjects we didn't need to apply for Disabled Student Grant.

All went well for two years, until DS1 had to start doing Project work. I don't know about you, PN, but DS1 has difficulty starting things - there's an element of perfectionism there, and if he either can't see the end point, or can't make a perfect way to it, he can't start. Rabbit in the headlights kind of thing.

So he talks to his tutor, who sends him to see Student Support, who say "You need a mentor." And they get him a mentor, and then say "You need a Disabled Student Grant to pay the mentor, apply to your Local Education Authority."

Strangely enough, the LEA are reluctant to accept an 8 year old letter saying "This child might have AS", but that's all the written evidence we have, although I know there MUST be something more recent, from his GCSEs! So he has to have an assessment, and before the assessment, I write a long essay saying what a strange child DS1 was, and both his Dad and Grandad are a bit like this too, oh, and I've talked to my cousin and we both think our uncle was on the spectrum, and she says her brother probably is too, so he's got it coming from both sides of the family!

Anyway, assessor talks to DS1, does some tests, reads my essay, and then writes a letter saying "he shows fragments of AS, and seems to have had more fragments when he was younger."

I think he's got his DSG however, which was the main thing! It leaves me not knowing whether he's been diagnosed with AS or not, but I shall always think of him as an Aspie. Having said that, I do realise that he functions pretty well without people making allowances for it - although that does take him outside his comfort zone.

Phew, apologies for the essay. You lot do realise I'm more comfortable typing than talking, don't you? :rotfl:

PasturesNew

Savvy_Sue wrote: »

PN, I don't know if it would help, or if you could even face working through the process, but you were doing a course weren't you? Being diagnosed through Uni is probably one of the most common routes for adult diagnosis.

I had to drop it due to a series of events. The bottom line is that the course wasn't in a format that was good for me. It was all haphazard and without structure at all. I thought it was a course, but it wasn't; a module had a title, then you were given an assignment to "pick a topic and write about it" whereas I thought I was going to do a course on the subject (hope that makes sense).

Also I wasn't given information about how it all works/runs until I'd not done 2 assignments. e.g. I didn't know how it fitted together, what dates it worked to, what happens, what happens if you don't do one, how you can pause it and pick/choose what you're doing etc. I really had no idea what was going on or what to do at all. And I kept asking ... but nobody was listening to my question (usual story!), it turns out I should have had access to the information at the beginning and somebody had made a mistake and not ticked a box. So they assumed that I had all the information. And I didn't know it existed to be had ... I was saying "I don't know what's going on or how it all works or when... etc". And I was at a loss how to proceed. So I just blotted it out of my mind as it was preventing me getting on with other things.

Savvy_Sue wrote: »

...All went well for two years, until DS1 had to start doing Project work. I don't know about you, PN, but DS1 has difficulty starting things - there's an element of perfectionism there, and if he either can't see the end point, or can't make a perfect way to it, he can't start. Rabbit in the headlights kind of thing.

Unless I know all the information I can't start. e.g. my assignment question was like "Pick any aspect of Personnel Management and write a critical analysis of it". Thing was, I had never read anything about Personnel Management, didn't even know what was in it. I thought I was on a Personnel Management course, and that was all I got! There was no course, you had to go off and read stuff and write a critical analysis... I had no starting point (I did point this out/ask at least 20 times, but they didn't seem to understand my question). And I have never SEEN a critical analysis. Now, I am sure I can do one in theory, but what does it look like? It's like being asked to draw a house; I can draw a house, but at what level am I aiming? 8 year old's square with windows and a squiggly smoke? Or architect drawings? I needed to know the scope, what one LOOKED like. They didn't understand this either.

Savvy_Sue wrote: »

You lot do realise I'm more comfortable typing than talking, don't you? :rotfl:

Yeah