Aspergers/ASD support thread

Vicky123

How did they get a diagnosis of autism spectrum disorder (ASD) without showing any signs of autism?

[Deleted User]

I hope this helps someone.

We've had a bit of a year. Finally split up with my younger son's father, lots of illnesses and extreme shortage of money.

But finally, something has gone right. My son was in Sixth form, the school promised they'd support my older son as he has aspergers and dyspraxia.., very intelligent but has some challenges that affect his school work. The school did nothing. Had meetings, countless emails, he had one teacher who scared him to death, and was lucky to get a D (mostly E's and F's) in his AS levels. Finally, my son could take no more and left. He started a Princes Trust course that ends in July. Much to my surprise, he's gained a lot of confidence from this course, he's 17 and most of the other people are in their 20s so more accepting of him as he is. He keeps saying 'Mum, I've actually got friends'. Which is good, but also rather sad that its taken him this long to get friends who value him.

What started most of these changes was me requesting a CAF when I realised things were going wrong with six form. Its led by a wonderful Connexxions person and I don't know how she's done it but she's really pulled some cats out of the bag. At times I was quite negative and so was my son but she encouraged us just to try things out and see if it worked. A lot of it didn't but we did manage to find a few things that did help. Thanks to her.

My older son wants to be an Actor. Not my top career choice for him, but its what he wants. We are lucky enough to have a local college with a real theatre attached to it. He auditioned last week (Mum was chief director of the monologue, poor thing, thank god its one of those things I had a little knowledge about) and he received a phone call within half an hour telling him he was in. He has genuine acting ability, always has. Yesterday we went back to the college having been asked to see their Special Needs Co-ordinator (normally I have to batter my way to their door a couple of months after he's started the course, regardless of how I try to see them beforehand).

She was so wonderful. No question of 'we don't have the funding/we don't see the need'. She's even going to be working with him on some workshops the college organises during the holidays.

She told me that he did so well in the audition that she'd been told to do whatever she had to to get him in the college. I seriously could cry. At long last my beautiful talented son has been recognised for the wonderful person he is. And maybe, just maybe he'll get the support he needs to be what he wants to be.

But I have to say.., EVERY child should have this. I'm glad that for a couple of years at least, he will get what he needs but why wasn't it provided when he was 8? He's been through murder and just expected to put up with it. Its overtaken the whole family at times (I'm sure there'll be people here that will wring a cord with).

So I guess the lesson is to never give up (at times the last year I've been wondering what on earth I was going to do next, particularly when he left school 3 months ago). I'm sorry if this post sounds a bit crazy.., I can see it does but its just been a bit of a struggle lately keeping going. But I want other parents experiencing the same stress to know that even when it seems like there's no where else left to go, things can get better.

Taken4granted

Hi vicky I should have said they don't show many signs now they are older. We do get the occasional tantrum and the communication is slow at times.

When they were younger it they were very slow with crawling, speech etc.

They are in schools specifically for children with learning difficulties now which I think has helped immensely.

Sorry for the confusion.

seven-day-weekend

deannatrois wrote: »

I hope this helps someone.

We've had a bit of a year. Finally split up with my younger son's father, lots of illnesses and extreme shortage of money.

But finally, something has gone right. My son was in Sixth form, the school promised they'd support my older son as he has aspergers and dyspraxia.., very intelligent but has some challenges that affect his school work. The school did nothing. Had meetings, countless emails, he had one teacher who scared him to death, and was lucky to get a D (mostly E's and F's) in his AS levels. Finally, my son could take no more and left. He started a Princes Trust course that ends in July. Much to my surprise, he's gained a lot of confidence from this course, he's 17 and most of the other people are in their 20s so more accepting of him as he is. He keeps saying 'Mum, I've actually got friends'. Which is good, but also rather sad that its taken him this long to get friends who value him.

What started most of these changes was me requesting a CAF when I realised things were going wrong with six form. Its led by a wonderful Connexxions person and I don't know how she's done it but she's really pulled some cats out of the bag. At times I was quite negative and so was my son but she encouraged us just to try things out and see if it worked. A lot of it didn't but we did manage to find a few things that did help. Thanks to her.

My older son wants to be an Actor. Not my top career choice for him, but its what he wants. We are lucky enough to have a local college with a real theatre attached to it. He auditioned last week (Mum was chief director of the monologue, poor thing, thank god its one of those things I had a little knowledge about) and he received a phone call within half an hour telling him he was in. He has genuine acting ability, always has. Yesterday we went back to the college having been asked to see their Special Needs Co-ordinator (normally I have to batter my way to their door a couple of months after he's started the course, regardless of how I try to see them beforehand).

She was so wonderful. No question of 'we don't have the funding/we don't see the need'. She's even going to be working with him on some workshops the college organises during the holidays.

She told me that he did so well in the audition that she'd been told to do whatever she had to to get him in the college. I seriously could cry. At long last my beautiful talented son has been recognised for the wonderful person he is. And maybe, just maybe he'll get the support he needs to be what he wants to be.

But I have to say.., EVERY child should have this. I'm glad that for a couple of years at least, he will get what he needs but why wasn't it provided when he was 8? He's been through murder and just expected to put up with it. Its overtaken the whole family at times (I'm sure there'll be people here that will wring a cord with).

So I guess the lesson is to never give up (at times the last year I've been wondering what on earth I was going to do next, particularly when he left school 3 months ago). I'm sorry if this post sounds a bit crazy.., I can see it does but its just been a bit of a struggle lately keeping going. But I want other parents experiencing the same stress to know that even when it seems like there's no where else left to go, things can get better.

SO pleased for your son, it is wonderful when someone finally realises their talents, isn't it?

[Deleted User]

Yes, he's finally doing what he wants to do. He's tried to do Drama before but courses were always full. He finally managed to enrol for drama at the Sixth Form but it was level 3, and the teacher told me he should be capable of working at director level. There was absolutely no appreciation of his needs or experience. I still get upset about it. Schools really don't seem to be about enabling do they? The Equality Act seems meaningless unless a school is prepared to act upon it.

SallyUK

I wonder if anyone can offer some advice please.

I have a 20 year old son, who was diagnosed with Aspergers when he was 7 and when we lived in Scotland. He was given lots of support both in school and outside school.

We moved to live in England in 2004, and he wasn’t given any help or support. They said it was because he was statemented, but we didn’t have statements in Scotland. It mainly affects him by making him painfully shy and disliking social places, and when he was at school, it affected his co-ordination.

Anyway, we’ve managed ok for the most part, he got through college and is currently at university.

Now that he’s going into is final year at uni, I can sense his unease. He’s dreading leaving uni, as he has no friends where we live and he even joined some sports clubs at uni, so has made lots of friends there, despite him being uncomfortable in social surroundings, but he knew he had to make friends at uni. It’s been the making of him. He’s also saying things like he doesn’t like his subject and he wishes he’d chosen history instead. (I think he has a fear of failing, although he did get a 2:1 recently.)

He has been trying to find a job for ages now, but keeps getting the same response, so experience, no job. This is getting him down too. So he knows when he leaves uni next year that he will be back home, no friends, and not much prospect of finding a job. That’s the negative attitude he has at present. Of course he has no money either. I’ve been giving him money so he can go outside his room instead of playing his PS3 all the time. The only place he goes sometimes is to the gym.

He mentioned to me recently that there were bank accounts opened when him and his sister were babies Their dad abandoned us back in 2000 and left us with horrendous debts. So to cut a long story short, we went to the bank and they tracked down the accounts and gave the children cheques. My son got £127 and my daughter £150. I said we should go to their bank to pay them in even though they didn’t have their bank cards with them. He didn’t want to, but I insisted.

We went into the bank and the very nice advisor helped us out. When it came time for my son to deposit his cheque, the advisor said to him, “Did you know you owe us money?” I couldn’t believe what I was hearing. Turns out he had been ordering things using Paypal and had been charged because he had no money left in his account. The advisor mentioned to him that he really didn’t want to have a bad credit history at his age and offered to change his card to one that wouldn’t let him go over a certain limit for a year. He also made an appt for him to go and chat to someone on Thursday at the bank.

I couldn’t believe what I was hearing. I was livid, mortified, humiliated.

We went home and he went straight upstairs! I eventually called him down and had it out with him. But that’s just it, he won’t open up and talk to anyone. You don’t get anything back from him. He just let me shout and yell and all he could say was that he was depressed. The thing is, I don’t know whether that is true or whether it’s an excuse.

His Dad, who I said disappeared years ago, suddenly sent him a friend request on Facebook about a year ago. My daughter didn’t want anything to do with him, but my son befriended him hoping that he could get some of the money that was outstanding in maintenance. So far, he owed about £150,000 outstanding maintenance. Hid dad started sending him the odd £100 here and there.

Recently, my son, asked his Dad if he could have some money to pay some bills, and to see him through the summer, but his dad told him he had no money. (His Dad now lives in the Middle East and is a manager in a oil company and travels regularly to a rig in Angola, and he says he has no money?) My son only asked for £100. His Dad has also replaced my son and daughter with three new children.

So I think my son has been affected by this too. His Dad made all sorts of promises when he first contacted him, saying things like, “I know I’ve a lot of making up to do,” and “whatever you need, I’m here for you, just ask.”

My son seems addicted to spending money on Marvel comics, books, shoes and clothes.

Could this be related to his Aspergers? Why doesn’t he understand the seriousness of it, as I have already helped him clear some debts once before and he promised he had closed his Paypal account.

I’ve even looked into taking on a second job so I can give them what they want and need, especially as my daughter will be starting uni next year.

I feel if he would only open up and talk to someone, even scream and shout just to let his emotions out, then it would really help him. But who?

Any advice would be appreciated.

Vicky123

He seems to have slipped through the net regarding support.
Did he have a record of needs when you were in Scotland, that would be the same as a statment? The English system works that a statement carries through school, with a diagnosis they should have a social worker from children with disabilities team which will move to adult services at 18.
Within adult services someone can access counselling which may help or at least have some ideas for resources or let you/him know what's available in your area. Failing all that you could go to GP and see if he can move into the system now, maybe get a referrel. None of it's perfect but it's worth trying, you never know what might be out there.

SallyUK

Thanks for the reply Vicky - I'm not sure about a record of needs or anything like that - I just know that he was diagnosed by a psychologist and then the support was put in place at school for him.He was also given help outwith school too. Then it all seemed to have stopped when we moved down here.

Sal
x

Vicky123 wrote: »

He seems to have slipped through the net regarding support.
Did he have a record of needs when you were in Scotland, that would be the same as a statment? The English system works that a statement carries through school, with a diagnosis they should have a social worker from children with disabilities team which will move to adult services at 18.
Within adult services someone can access counselling which may help or at least have some ideas for resources or let you/him know what's available in your area. Failing all that you could go to GP and see if he can move into the system now, maybe get a referrel. None of it's perfect but it's worth trying, you never know what might be out there.

Vicky123

I would imagine if he ever had a record of needs it would have followed him, so, you need to speak to the GP for referrels into the adult services with his diagnosis and current problems as reason.
Good Luck, I know how hard it is when they get older and become so negative about everything, don't try and sort it all out by yourself, get the help.

Savvy_Sue

At Uni, he will have a personal tutor, but you can't make him talk to his tutor. He may also have some help with his other problems, or be able to access it, through the disability support service there (it may have a different name). However, they won't necessarily be able to help if he doesn't ask for it - you could phone and find out what's available, but he's reckoned to be an adult now. They may make contact with him, and see how they can help, but they can't force it on him.

I would say however that the 'closed-up-ness' does sound very Aspie-ish. You talk about him 'letting his emotions out': they don't necessarily have the wiring to do that, if that makes sense.

You have one thing on your side: he's said he's depressed. It could be well worth him seeing the GP about that: a skilled counsellor might be able to help him work through a few things in a way that a mother just can't. I used to ask DS1 how he would feel if ... and he just couldn't answer, because he didn't know how he'd feel, or even IF he'd feel!