lizj

Well, he has his own money but it comes from us, as he is at that awkward stage of being an adult student and entitled to absolutely no benefits, grants or support. I do take the money from him, he doesn't seem to care, it's less effort than taking care of the stuff in the first place. He is supposed to look for work later this year: God help us all.

AAAAAAAAARGH! 19 year old DS loses stuff all the time. This week it has been his mobile phone, 2 security passes, a watch, a pencil case and a data stick! He has always been like this, he never has a clue where anything is. I used to spend every evening trolling around school finding things he had lost during the day. It is SO inconvenient and can be expensive to keep replacing things. Is this typical of ASD teens? Might he grow out of it? Any tips on how we can stop so much stuff going missing? He already uses belt clips for wallets and keys.

I think the expression "difficulty maintaining friendships" means that AS people find it harder to make friends, because they often don't understand the unspoken rules of social interaction, and that the friendships they do make often fail. It's mainly down to social interaction, saying and doing inappropriate things without knowing it, and often being unable to see the other person's point of view, which can lead to fall-outs.

In my experience there was no problem with me filling in forms for my son - it is common practice for DLA. The content of the form will no doubt indicate that Glen is not capable of managing his affairs. Just to give you a heads up - once the forms have gone in, the DWP will arrange for a home visit. A benefits person will come to your home and meet with you and Glen, to confirm that your being his appointee is being done in his best interests and with his consent (if he is able to give it.) I was a bit anxious and intimidated by the thought of this visit, but it was actually no problem and over in a few minutes. It is just to check that there is no abuse or exploitation going on.

I am not Aspergic or ASD, but I am also terrified of using the phone, and get my husband to make calls for me wherever possible. I think it is a far more common problem than people realise. For me, the problem is that you can't see the other person, so you don't get any clues from facial expressions or body language. This confuses me and unsettles me. Thank God for email is all I can say!

First of all, you have my sympathy - anyone coping alone with an Aspergic teenager has a lot on their plate. All I can say is that the stresses and strains of the teenage years have a serious effect on ASD teens, all those hormones and life changes can make things much worse than usual. This bad spell won't last for ever. You are getting some help and support from the medical people, make the most of them. And don't be too hard on yourself. You have a difficult child and a hard life at the moment, which is isolating and depressing. Look after yourself - perhaps you need to see your doctor yourself?

Hi, When my two boys were at the same school, I made it very clear that the elder "normal" boy must not be saddled with the responsibility of the younger ASD boy. Teachers looked to him to sort out problems, and he was gradually becoming his unpaid teaching assistant at breaks and lunchtimes, and then they started getting him out of class to deal with him. I felt this was totally unacceptable, and told both school and the eldest that his education and social life was not to be ruined by his brother's disability. Your daughter is at an age when fitting in and being just the same as the others is very important, and no matter how much she loves her brother, she will probably find his behaviour embarrassing. I think our "normal" children have enough to put up with at home, in holidays and at weekends, and that they deserve a chance to live their own lives and have their own friends when they are in school.

Oh dear, you have my sympathies. We have been there, a school that doesn't want a "difficult" pupil, won't take their problems seriously and tries any way they can to get rid of them. Our son's primary was exactly the same. I'm afraid that if he doesn't have learning difficulties it will be more difficult to get him into a special school. Start by looking at what is available locally. You may be very lucky and find there is a school that specialises in ASD or has a special unit. You will need the backing of either a paediatrician, psychologist, educational psychologist or the LEA inclusion officer. Preferably all of them. It was the inclusion officer that finally got our son into a special school, and things got very much better very quickly. Before that happened we got involved with a lot of behavioural specialists, teachers and advisors, and he spent three terms in a PRU, which was not ideal but at least they understood his behaviour and didn't go into panic mode every time he stepped out of line. Now at 19 he is back in mainstream at college, and things are not so good again. The educational psychologist is probably the best place to start. Prepare for lots of reports, tests and meetings. Best of luck, and keep your chin up!

Oh, we all know and understand that feeling of hopelessness and helplessness, but I hope it makes you feel better to know that things do get better. As the years pass you will grow to understand what makes him tick, and even if he doesn't communicate in a "normal" way, you will learn to know what he means and what he wants you to know. There are times you think you can't do it, but they pass and your love for him and determination to do the best for him will win through. Be kind to yourself, don't set yourself impossibly high standards and accept any offers of help wherever they may come from.

Just wanted to share this with parents and kids having a hard time at school or college. Early this term I posted asking for advice on dealing with bullying, as my 19 year old was still suffering at college having had years of it at school. Today the ringleader thug mainly responsible for it has been permanently excluded and arrested for stealing phones and money out of students' bags (including my son's MP3 and data stick). Once in a while the good guys win and and bad guys get what they deserve! I hope this encourages someone.

I am a parent of a young person with Aspergers. Please try not to be too hard on your parents. They are very worried about you and probably get angry because you seem more concerned with your collection than you are with your own health and well-being. I have sometimes told my son that things "come between him and his wits" and this is how it looks to NT people. They don't mean you or your decks any harm, they just want you to focus on getting well. Trying to talk to them about how you feel might help them understand. Good luck, hope you are soon well again.

Thanks for your replies. The latest is this: he spoke to his tutor who asked if he wanted to make a formal complaint against two students in particular. He wasn't sure. He doesn't want them disciplined, just warned off, but this did not seem to be an option. At break time he was approached and told that if he made a complaint the friends of the two in question would "get him". So he is now too scared to make a complaint. It seems that colleges are no better than schools at dealing with these thugs. I am just hoping that it's still early days and the novelty of picking on him will wear off soon.

It may help you to know that anxiety about using phones is more common than you think - I really struggle and I don't have any ASD issues at all, and so do some other NT people that I know. If I can get someone else to call for me, I will. If I need to make an appointment, I tend to put it off until I can go and do it in person. And email has been a godsend because you don't need to speak to anyone at all. If I am in a position where I have to make a call, I carefully plan what I want to say in advance. If the conversation takes me too far away from my script, or I don't understand the other person I will say "Sorry, I have to go. I will call back later." or pretend that there is someone at the door. It's a good idea above, start by making routine enquiries about opening times. I might do that myself and see if it helps!

Bullying. Son (ASD, MLD) is now 19, at college and in a mainstream class for the first time since age 11, when he was moved into special school. Only four weeks into term and he is already the victim of bullying - other students stealing his bag and throwing stuff around the room, sticking post it notes on his back, tripping him up in the corridor etc etc. I had hoped that by this age they would have grown out of this kind of behaviour. I have told him to speak to his tutor about them, but wonder if anyone has any advice or at least encouragement for us? Will it ever end?

With regard to hobbies, we just gave up in the end. With our son we tried Beavers, Cubs, St John Ambulance, music groups, church youth group and a wind band. We were asked to take him out of them all, and we just did it without making a fuss. School was enough of a battle and we couldn't face yet more hassle in the evenings. Volunteer adult leaders of youth organisations are just not trained or equipped to deal with kids with challenging behaviour. And if they don't complain about everything, the other parents will. The most annoying thing is that often the behaviour of the "normal" kids is worse, but they seem to get away with this sort of thing. The only way for ASD kids with behavioural problems to access a social group, is if they are willing to recruit a volunteer to give one-to-one supervision for your child. I am sure Blue Peter did an appeal on this quite recently - someone on here might know how you can find out about this provision?

Thanks for your replies and your concern. Just to update, following a huge row between us and her parents, I finally had to make him give her an ultimatum : either stop messing him round or finish it. They have split up. Now he is very hurt and I feel like a big bad ogre. I know it is in his own best interests long term, he will get over it and so forth, but it is so hard to stand back and watch your child struggling to cope with things that seem easy to other people.

Wow, that's really interesting, at such a young age - I have no idea if it's linked to AS, but it would be fascinating to investigate.

I am just curious to know: do parents on here whose children receive DLA claim Carer's Allowance too? I know we are entitled to it, but have never made a claim because I have this feeling that I don't want benefits for being a mother and looking after my own son. On the other hand, it has been almost impossible to go to work since he was born, and the money would be very useful. What are your thoughts. Should I claim it or not, and why?

Are you sure that he means "deja vu" in the true sense of the term? It seems a very sophisticated thing for a ten year old to recognise and express - unless he is high achieving, in which case he might well know and understand the phenomenon. I ask because my OH, who is mildly Aspergic, used to experience what he called "nears and fars" at about that age. This was visual disturbance and dis-orientation, caused by stress in social situations. Experiences like these are quite common in people with AS although maybe not a diagnosing factor.

Yes, DLA is to pay for additional needs, but in the case of ASD it is very hard to quantify what those needs are. For example, a "normal" teenager might go out on the bus. Cost: one bus fare. But an ASD teenager may need to be taken on that journey. Cost: two bus fares. A "normal" teenager generates a certain amount of dirty laundry. A teen with ASD may struggle with clumsiness and dirty clothes more quickly, may have problems with hygiene and so be smellier etc. Some people with ASD have sensory issues with food, or allergies, and may have particularly expensive dietary requirements. And because they usually struggle with socialising, it costs a lot more to keep them occupied and supported, as activities and outings cost a fortune. Especially when they have to pay adult rates for everything. What I am trying to say is that it's the everyday costs that increase with ASD, and this is why some parents find it helpful to use the DLA as part of their regular income rather than handing it over to the young person.

When my son was 16 we were in exactly the same situation - DLA came to me as his appointee and he received £30 a month in EMA. As the DLA was a lot more money, I kept it for him. It covered his living costs - board, food, clothes and shoes, laundry and travel to college, He got the EMA paid into his own bank account for his spending money. I kept a close eye on how much he spent out of the account. It helped him to learn the value of money, when it was gone it was gone, and also he learned that if he lost it by being late for classes, there was no bailing him out. So he has gradually learned to become more responsible for himself. Now he has no income at all apart from the DLA. I still keep it all and pay him a weekly allowance out of it. We are both happy with this arrangement - he trusts me to do what is best for him and in his heart of hearts he knows that he is not yet able to manage that amount of income.

Call me Jaded, you have my sympathies. I too am wondering if it ever ends. My son is now in the nightmare of 19+ provision, at which stage we have to pay tuition fees for him to not receive the teaching and support we were promised. £700 for him to sit on his own and stare out of the window for a year! I dread to think what it is going to be like when he eventually leaves education and we enter the great world of (un)employment and work training. All we can do is keep on kicking up a fuss and doing the best we can do for them.

Can anyone advise on how best to help a teenager (19) with ASD who is having a difficult time with his love life? He has had a "girlfriend" for about 6 months. At first they seemed happy enough, quite fond of each other in an innocent way. She has SEN and ADHD and they go to college together. But, as usual, he started to get on her nerves with his incessant talking, and she has now turned against him and is being awful. She is cheating on him with his friend, excluding him from her social life, and basically taking the p***, (making snide remarks on Facebook etc,) but he just can't accept how awful she is being. He insists that he loves her and she is still his girlfriend. I think he will put up with any treatment rather than be single again. He is very afraid of loneliness and isolation. I am getting very depressed because I can see his hurt and confusion, but I just don't know how to help him. Anyone got any experience?

ASD boys often seem to hit puberty quite early. My son was about 8 when he started to smell bad, at 9 he had terrible acne and was sprouting hair all over the place. We took him to a paediatrician in case it was likely to cause problems later on, but hormone tests and x-rays showed him to be in normal range. However at 19 he is still just 5'6" tall, and I feel that they were wrong about his growth. One of the problems we had was getting him to wash and use deodorant, as at 8 he just did not see the need. There was a sympathetic male TA at school, and we ended up sending in a wash bag with soap and deodorant in (I think it was Dove or Simple, something quite gentle). The TA would take him for a wash and spray when needed - my son was more willing to co-operate for him than he would for me. I'm afraid it took years of gentle persuasion mixed with nagging, but things began to change at about 15, He is now as hygiene-aware as any other teenager, and no longer to be avoided in public!

Every local authority has their own rules. Some give them to recipients of DLA, some ask for a doctor's letter. Mine (Derbyshire) will only issue them to people who are Adult Social Services users, which makes it virtually impossible for anybody with ASD to get one. I don't really think that the advice of an instructor would qualify as a medical reason for you to be refused a licence. Have a look on your local council website or call into their offices. And good luck, it's not easy in some places!