Aspergers/ASD support thread

justontime

Savvy Sue, you have helped me so much with your post about university. My son is not at that stage yet but he has his whole life planned and university is part of that plan. I guess he may have a slightly different diagnosis to your son, (he gets DLA high rate care and low rate mobility) but school have never told me that he could have extra time in exams. He has a high IQ and he does reasonably well in most subjects (with limited effort) but he does find English more challenging. You have given me reason to hope that he may be able to go to university when the time comes. Thanks

PasturesNew

justontime wrote: »

Do you have any strategies to overcome the issues about being looked at? My son often accuses me of looking at him when I am not looking at him at all. He also has problems making eye contact with other people especially if he is expepected to talk to people as well, but he seems to have a strategy to look past people rather than at them. These don't seem to be things that I can do much to help him with.

My main strategy is in not going out
Sometimes you just can't avoid it though, can't avoid the thoughts that you are being looked at (e.g. using a bus). I have always forced myself to do things because I didn't know I had AS and I just soldiered on and had to do stuff because others do so I was following rules and confirming, so I had to. I don't have any strategies to overcome it, I just suffer in silence as long as I can/as long as I have to, then immediately try to find a hiding place. e.g. when I get off a bus I find the nearest narrow, deserted short-cut/alleyway and dash down that to gather my thoughts and "think happy thoughts" while walking slowly.

Generally, I find deliberately walking slowly where I am alone helps in a lot of situations.

I am always accusing my dad of looking at me. But he is (he's AS). When he's watching TV and I am reading a magazine, he tries to involve everybody else in the programme he's watching and sits there staring at you until you acknowledge him and also watch it with him. But I just want to be left alone and am aware that he's looking at me so I have a go. Or if he wants to say something to somebody else, he looks directly at others to gain their support. I am aware too then and usually shout "stop looking at ME when you're talking to her ..."

I think the fact that people are looking at you makes you feel you are expected to participate/contribute in any social interaction/conversation and that puts me in a panic as I can't.

I've never thought about a lot of these things in this depth before so it's hard to find examples or make myself clear right now on this.

I DO generally look past people, find something else to look at, or fiddle with. I pretend I am really involved in things. I tend to focus on something I have and smooth it. e.g. if I have on a top with tassles, I will slowly straighten them and not look away from that. Just immerse myself in something that I can focus on.

If I am at work, I will go out of my way to get paper/pen and make good notes. This gives me something to focus on, it makes the other person think I am really into whatever they are saying or what they want -and- it helps because when I am under such pressure of one-to-one without the notes I'd have NO idea what they wanted or what I said I'd do! It also helps as I have trouble remembering the spoken word.

I do shorthand. That helps. People then have NO idea what I am writing and something I am writing things like "just get a !!!!!! move on ... get to the point ... damn I am hungry.... wish I wasn't here".



They never know!

I also write lists in public places. I make out I am making an important list, so therefore I look like I have a purpose and don't stand out so much.

Again, usually in shorthand. Not important lists. Sometimes even just days of the week .... just something to focus on!

justontime

Pastures New, thank you, you have helped me to understand some of the aspects of my son's behaviour that make life so difficult for him. I had never understood the walking slowly thing, he collects random stones too, maybe that is just to give him something to concentrate on.

As a fairly ordinary mum (I think) I struggle to understand why he does things and in my efforts to help him I probably make things worse. If I ask him how his day was he accuses me of subjecting him to 20 questions, and if I ask what subjects he has at school today (to check that he has the right books with him)he thinks I am interrogating him.

He carries a worn out piece of material in his pocket because he likes the feel of it and I notice him touching it when he is in social situations. At home or when visiting family he always sits with a cat, dog or his guinea pig on his lap, he smoothes the fur and devotes his whole attention to the animal. Animals love him and he is better with them than anyone else I know, he even deals with the not so pleasant aspects of animal care.

I get so frustrated with him when he doesn't remember important information, such as what his tutor has asked him to do for homework. It had never crossed my mind that because it is a one to one situation he may have difficulty retaining the information, so your description of how you cope at work has given me a clue to my son's feelings.

me_and_me_monkeys

Greenqueen wrote: »

Is there any help available at university for AS people? My son wants to go but I suspect thats because his school expects all their students to go. I worry because he does not go into shops, does not "do" public transport and his diet is so restricted that being in catered halls is a non starter. He has actually got some offers and an interview lined up, (heaven help the interviewer)! Should we declare he has AS?

I was told that some of the bigger uni's have small accomodation units for students with ASD where they can be supported - not sure how many or where as my consultant told me that they were becoming more common and by the time my boy goes (hes 8 at the moment) they will be quite common

PasturesNew

justontime wrote: »

...
he collects random stones too, maybe that is just to give him something to concentrate on.

I do that. It's because they catch my eye and I can drift off into my own little world looking at them. Especially pretty ones.

I recently went into a house share for a month or two, they had a gravel back garden where I smoked. I'd go out there and squat down smoking and looking at every stone. Picking out the interesting ones and making a small pile.

Stones are great!

justontime wrote: »

If I ask him how his day was he accuses me of subjecting him to 20 questions, and if I ask what subjects he has at school today (to check that he has the right books with him)he thinks I am interrogating him.

Yes. It's part of the feeling watched thing. I also have strong feelings of needing privacy and these questions are intrusive. I feel I am about to be criticised and it can upset me for hours and always leads to arguments.

justontime wrote: »

when visiting family he always sits with a cat, dog or his guinea pig on his lap, he smoothes the fur and devotes his whole attention to the animal.

Yes, I always grab a cat if I can, although I am not overkeen on other animals. And yes, I devote all my attention to it. You can fill in gaps with something about the animal!

justontime wrote: »

I get so frustrated with him when he doesn't remember important information, such as what his tutor has asked him to do for homework.

That is a combination of things. [1] remembering what people say is hard, after the first sentence it all blurs. [2] being interrogated makes your mind race and panic and you can't think straight to find the right answers. Especially if the question is asked and followed by more. Just ask one slow question at a time and wait for the answer, say nothing. I need time to think back, think through the answer.

Start interrogating and nothing's coming out!


Well, the above is how I see things and cope. Most of this stuff I've always known I had a problem with, but until I knew of AS I had NO idea why, and so no ability to recognise these behaviours and analyse what was going on in my life.

Good luck!

trubster

Hi, I hope someone can help me and I am not sure if this is the right place etc.

My son has recently been diagnosed as Autistic, we were told to claim DLA and we got awarded the Higher Rate of Care but not mobility as our son was under 3 (He is 2 Years and 2 Months Old).

The main problem we are having with him is that he is refusing to walk and he has outgrown his 2 buggies and we cant see one that his feet dont catch on the wheels, I was in our local Mothercare and they said we could "Hire" a buggy LIKE THIS ONE as they are designed for people with disabilities. She also said we could hire "Sensory Equipment" ie. toys, but again, no idea where from.

The only thing is that we dont know where to start and also if we are on a bus, we keep getting told to fold down buggies because wheelchair users want to get on but the thing is, He is disabled too, so is this fair?

Any advice on where we can start to look would be great and also any advice from anyone with experience with ASD would be great

Thanks for your help.

Kev

trubster

Hi, I hope someone can help me and I am not sure if this is the right place etc.

My son has recently been diagnosed as Autistic, we were told to claim DLA and we got awarded the Higher Rate of Care but not mobility as our son was under 3 (He is 2 Years and 2 Months Old).

The main problem we are having with him is that he is refusing to walk and he has outgrown his 2 buggies and we cant see one that his feet dont catch on the wheels, I was in our local Mothercare and they said we could "Hire" a buggy LIKE THIS ONE as they are designed for people with disabilities. She also said we could hire "Sensory Equipment" ie. toys, but again, no idea where from.

The only thing is that we dont know where to start and also if we are on a bus, we keep getting told to fold down buggies because wheelchair users want to get on but the thing is, He is disabled too, so is this fair?

Any advice on where we can start to look would be great and also any advice from anyone with experience with ASD would be great

Thanks for your help.

Kev

Js_Other_Half

trubster wrote: »

Any advice on where we can start to look would be great and also any advice from anyone with experience with ASD would be great

Thanks for your help.

Kev

Have you had any help from your health visitor? In our area, once a child has been flagged up as having problems they get help from the health service in the form of special needs nursery, etc They also run support groups and lend things out I believe.

Social Services usually have something to offer too, especially as the child gets older.
I found this on the sheffield council website: http://www.sheffield.gov.uk/safe--sound/social-services/getting-help-from-social-services/help-for-children-and-families/children-with-disabilities

You may find there are problems with proving the buggy is not a push chair( if you see what i mean) However a new bus pass from april 08 seems to be an option for you - and it means the carer goes free :http://www.travelsouthyorkshire.com/NR/rdonlyres/9896D64E-FF9C-4493-AC52-3E7FB392540F/0/MobilityPassLeaflet.pdf


The Family Fund may be an option for getting a grant towards the buggy:
http://www.familyfund.org.uk/newsite/content.asp?section=00010002

hth

justontime

I have had a bit of an upset with my son this evening. He is 13 and has ASD and he has been going on for weeks about being allowed to go to town on his own. I really don't think he would cope, his older sisters were about 13 when they first went to town unsupervised, but there were still rules, time limits, one friend only, pick up and drop off, etc. I am happy to work to a gradual plan with my son, but he wants to do the whole thing alone, because he feels he has reached the correct age to do that. He accused me of 'keeping him in a display case' then had a tantrum and stormed off. I know I need to let him learn, but he is not even coping with getting to and from school safely yet.

Most of all I am worried about him saying the wrong thing. Last year he walked to the post-box (no roads involved) and got beaten up because some older lads asked him what he was looking at and he gave a factual but (as far as they were concerned) provocative reply. He is also not brilliant with crowds or noise and he has a track record of getting lost (according to him he is not lost because he always knows where he is, but he loses time). My plan would be to take him and another lad to town, ask where they plan to go, ensure they have their phones and my mobile number, then let them go off for an hour and meet up for lunch after that. I doubt son would cope with that much anyway, but he feels my plan is humiliating. Any suggestions. By the way I have paid a buddy for him in the past, I thought a young man of 18 would help him to learn social skills in a way that i couldn't. It wasn't a great success, my son talked him into submission and asked him if he was dropped on his head as a baby because he was a bit slow! He wasn't slow at all - just shell shocked.

fsdss

hi trubster.

have you contacted the national autistic society?
http://www.nas.org.uk/
they should point you in the direction of a local group which will help you.

Sensory toys can be hired from your local toy library - in this area they prioritise the leasing of such toys for the families who really need it. i know that some red cross centres hires equipment too -

you will be entitled to use the portage services too

http://www.portage.org.uk/