Aspergers Syndrome/Dyspraxia

skater_kat

i wear top-end noise cancelling headphones when doing any kind of work/study activity. i also wear them anywhere were there is busyness and noise. they are the best thing i have ever bought and made a huge difference to my life.

Greenqueen_2

These thoughts have dominated my mind just lately. DS is 21 and has just graduated with a maths degree. How he managed to survive for 3 years away from home has astonished us. We took him at the start of each term (he cannot DO public transport) with a supply of food. His diet is so limited that this was quite easy. We contacted him using MSM messager because he cannot use a phone and asked if he had gone shopping to top up his food supplies. "oh yes its a B week" On querying this we were told he had bought ....bananas, bread, butter,biscuits, blackcurrant squash............! Next week its C so I`ll get carrots, chocolate, cereal..........! At the end of term we collected him in the car. After 10 weeks away he had done no clothes washing (I realise this is a teenage boy thing), but worryingly had not washed his hair (this is something he is still unable/unwilling to do), nor had a shave. He apparently went to every lecture but never left his room otherwise. He managed to stay in student halls for the full 3 years so didn`t need to deal with landlord, utility company, etc
Now he`s home he has no idea what he is going to do for a living, apparently did not access any careers advice. ( He refused point blank to do a weeks work experience while at school). Personally I don`t think he is employable. He is sensitive to noises and smells. Cannot use a phone or public transport. Cannot drive, does not have a single friend and will not go to the job centre to sign on. He currently lies in bed until lunchtime then browses the internet and plays computer games until he goes to bed around 1am. He has not had a diagnosis but the family all believe he has AS. Any ideas anyone?

Savvy_Sue

I am just wondering how good he is at the 'If ... Then ...' line of thought, and how 'rules-based' he is?

DS1 likes to know 'the rules', so it probably helped that even while he was still at school he and his brothers were aware of the choices: IF you go to Uni, THEN I do not expect you to pay keep. IF you do not go to Uni, THEN you have to pay keep. IF you do not go to Uni, THEN you do not doss around the house.

I didn't expect him to come home at the end of Uni, but when I asked what he was doing and he said he was going to try self-employment, I asked where he was going to live. And he was planning to come home - so I just asked how much he intended to pay for his keep? Negotiations were concluded in a satisfactory manner, and he set up the standing order ...

Having said that, he has only mild AS, so what worked for us may not work for you.

OneYorkshireLass

Greenqueen wrote: »

He has not had a diagnosis but the family all believe he has AS. Any ideas anyone?

Please don't take this the wrong way but how has he got to the age of 21 and be as severe as you say without having a diagnosis? Has anyone (GP, school, uni) ever commented on his 'rituals'? If not then that's quite worrying!

This might sound rude, and I'm sorry if it does, but if you thought he might have AS why have you not done anything about it previously? Getting help for an adult with AS is practically impossible IMO, had he got a diagnosis at school/uni your son might have been given the help he needs to function in adult society.

I'm surprised Uni didn't pick up on it as higher education facilities are usually more adept at spotting the signs, and don't usually shy away from offering help and advice.

Greenqueen_2

When he was a 2 year old at playgroup the group leader, herself a mother of an autistic child, asked me whether he was autistic. I dismissed this as impossible because he was so bright and looked "normal" unlike her son who portrayed a disabled exterior. As a family we thought he was a quirky kid in an endearing way. People would reassure us that "all children are different" and "he will grow out of it". By the time he started at nursery he could read and write and had a phenominal awareness of numbers and their uses. The nursery did actually suggest a referral to an educational psychologist who came to the conclusion that rather than having any sort of condition he was simply so far ahead of his peers academically that he was bored silly at nursery. At primary school he was an loner who was bullied for being different (Clever and with glasses), he never had a single friend. When he was 11 he won a scholarship to grammar school. We were delighted because we thought he would have more chance to meet someone of his own kind and fit in better with someone who perhaps was more on a level with him. However this did not really work. he still did not make any friends, never joined any of the clubs and activities available, never got picked for concerts/ plays etc. I had a word with his head of year who suggested getting him assessed. On ringing the local health authority I was told that as it was a behaviour issue it was the responsibility of the education dept. They in turn told me it was a medical issue. So we never got anywhere. When he went to uni he was put in a bedroom right next to the welfare officer in charge of his college (a sort of house mother). Whether this was deliberate or by chance I never found out, but it gave me peace of mind. (It is entirely possible that his school had some input in this because they have to send some sort of report as part of the application process).
Apart from his referral to the ED psych. at the age of 4 we have not needed to visit the doctor so there is unlikely to be anything on his medical file. I am left wondering if it`s best to try to get him to sign on for JSA ( but knowing that he hasn`t got a chance in hell of getting a job in the current market) or DLA when he hasn`t got "proof" that he cannot work.

OneYorkshireLass

Greenqueen wrote: »

I am left wondering if it`s best to try to get him to sign on for JSA ( but knowing that he hasn`t got a chance in hell of getting a job in the current market) or DLA when he hasn`t got "proof" that he cannot work.

I can understand how someone falls through the cracks - I did too, but my condition is much milder.

I think IMO the worst thing you can do is to get him onto JSA. It's a nightmare, I've been on it twice and each time the advisors tried to push me into a job that I knew I couldn't do because of the sensory issues. Any supermarket work is a definite no-no, can hardly shop in them. One advisor tried to compare me to his neice who had AS - saying she could work in Asda, so why couldn't I? And that's the most annoying thing with AS - no two people are the same and most government departments just don't understand.

Try claiming DLA. Some people do have success with DLA even if they don't have a specific diagnosis. If you have a decent local CAB office ask them for help.

Savvy_Sue

I must admit what OYL said resonated with me, because I was already thinking "how did it get to this, and what of the future?"

It might be worth getting in touch with the NAS and seeing if they can suggest a way forward. I think your son needs help, but I think you need help too, to move him on. I'd imagine it's going to be difficult, especially if he doesn't see that he needs help, but that's where the If ... Then argument might come in useful.

skater_kat

i've been on jsa for about 4 months now, i actually find it ok. i see a disability employment advisor to sign and they do not push me into ridiculous job applications (like asda, lol). i think it is much less stressful than facing ESA assessments etc. i think the ESA work test is particualy difficult for us aspergians to qualify through. but of course everyone is different and what might suit one AS person does not another. i am still looking for a job with minimal people skills and p/t hours - quite hard to come by it seems.

GlasweJen

DLA isn't an alternate to JSA. It is to cover care and mobility needs. No offence but if your son managed to live for several years in halls without support then he probably doesn't have enough needs to claim DLA care, he'd probably get low mobility but that's less than £20 a week. He should be claiming either ESA or JSA.

skater_kat

check it out!

http://www.autismworks.co.uk/work-with-us