Juney

Hi Reading this has brought tears to my eyes, my son is now 12 but when he was a toddler shopping was a total nightmare after a bad experience in Tesco ( the usual comments from other shoppers) I literally refused to go out of the house with the children for months. 3 months later I did and had a man came up to my face very aggressively and said 'Shut your f***** kid up ' then he proceeded to follow us around, I dived into the nearest shop BHS and went to the cafe and phoned my husband up who was working 25miles away asking him to pick me up. I was in tears.( All this was before diagnosis - so I DID think it was me and my poor parenting skills. I dread to think how insecure the kids must have felt with mum in tears everytime we went out! My son was diagnosed several years after this. I just wish I had known I wasnt the only one at the time as it wrecked my confidence for years. Gradually I've put strategies in place but shopping trips are half an hour long at the most and we have to stick to the list no matter what. Juney

My sons diagnosis is HFA. when I asked the paediatrican who's diagnosed him as I thought the diagnosis would be AS - she said that indeed the diagnosis was very similar but was depend on verbal language skills - she said that children with AS tended to speak at a younger age than children with HFA. My son didn't communicate with anyone outside of our immediate family till he was about 6 years old. I think theres pluses and minuses with bothe diagnoises really. juney

Some Children's Centre's run groups for children over 5 years children deemed 'in need' ( and children with disabilities are under s17 children act 1989) in order to promote their development and prevent social exlusion. My son was offered a place at one for up to 13 years old but refused to go ( what a surprize!!) So I don't know what it was like, I was told they did games, computers, usual youth club type activities. It might be worth looking into as a gentle introduction to social activities. My son refuses to any sort of social club/group at all, usually looking extremely puzzled at why on earth he would want to go and telling me I can go if I'm so keen!!! juney

Hi Stella, My son is in Y7 and moved up to a very big secondary school last september - this time last year I was very anxious but I am pleased to say that he has managed extremely well. Last summer he had about four visits between half term and the end of term. one was with me after school, we looked around all the classrooms, dining room, library, loos, and the SEN area. The next 2 visits he went from school with a LSA and he was also able to take a friend. they went at breaktime so he could hear the noise etc. Finally he did the usual day there that the whole of Y7 do. We did quite a lot of planning at home - I laminated his timetable - I waas going to colour code it but he hasn't needed me to. I was concerned that he would get lost between classses but he's adapted very well. He has a quiet area that he can go at break timetimes - but he doesnt use this very much. one of things that he does need a lot of help with is organising his school bag as he needs to take so many more books etc. So Good Luck to you and your son. juney

My son is 12 years old with HFA. he can't ride a bike and can't do shoelaces. he's a size 5 so its now difficult to get velcro straps, so I use these elastically pully lace things that you can get from sports shops. He can do a very loose lace if pushed - very stressful, and its too loose to be practical. This way he has a sense of autonomy as he knows he can manage his shoes and trainers without help and much less stressful before school for us all.

Hi, local authorities have a duty to assess under section 17 of the children act 1989 if a child is at risk of not been able to develop and achieving an adequate level of wellbeing, OR if he or she is disabled. or in other words ' in need', only need to provide services if they have the means. Its worth checking out the exact wording. The best people to contact are the local duty and assessment team, who will arrange for an assessment to be undertaken. Like other posters I have found a gap in the services between learning disabilties and mental health teams. I also agree with the fact that few social workers seem to have a good standard of knowlege of autism. juney

Really proud of my DS - just started secondary school, and for the past 2 days has managed to find his way around to the lessons on his timetable, cope with all new uniform, and managed to use public transport with the support of his older NT brother. By the sounds of it he has also managed OK at breaktime and lunchtime. juney

Clare, hope your son's day at school went OK. maybe put in writing to the Senco how you feel - this works better for me than phone calls. Stella, Hope your son enjoyed swimming and managed with his tie etc. My son has just had his second day at secondary. We've got tie issues this morning he had it on the outside of the shirt collar, I had to be extremely diplomatic about changing it! All the best for the coming few days juney

Thanks for your kind thoughts. will be on tenderhooks all day.

Thanks Chris for the good luck. I'll read this thread in more detail later as only 45 mins till DS leaves for his first day at secondary school. here I am trying to keep it calm. Big panic last night...how could I have forgotten I needed to teach him how to cope with his tie.. and he has no patience at all with this sort of thing. I've done a loose tie and he justs needs to slip it over his head and tighten it. Today is the first time he's managed to wear all the pieces of the new uniform at the same time!!! More nerves tomorrow first day on public transport with older DS in charge. Not sure how older DS feels - he hasn't had any choice. We have been practicing saying '40p please' be back later juney

You can get the cards from NAS website.

We've had a good summer break, managed to get out abit, its been easier as I passed my driving test this year. Getting apprehensive about back to school - as DS is starting secondary, so huge amount of change including using public transport. juney

very true wishingwell

I've got the cards which I've used a on a couple of occassions, it gives me a little more confidence that should someone start tutting and staring I can give them the card. ( more to try and make them realise they shouldnt be staring etc than anything else) All it does is make you feel 10 times worse and then everything is so much more difficult to handle)

No statement.

Hi, I find it is difficult to tell if the person really wants to know more, it really depends on my relationship with the person, if its a neighbour, or someone I don't well I'd say "Not bad, thanks," or something similar even if I was feeling awful. If it was a person I knew well I'd say a bit more, Like if I wasn't feeling well, I might say, " I'm not too bad, but I've got a cold I just can't get rid of." or whatever the situation is. If it was a uni tutor - I'd maybe make a reference to my uni work. " I'm OK, struggling with my essay a bit!- if it was my personal uni tutor ( mentor) I might go in more detail. It would also depend on where I was, and if they looked busy or rushing themselves. If I dont want to talk for long I tend to keep moving, or back away after a bit. Bullets idea is a good one as I sometimes forget to ask how the other person is. I think I sometimes ask in a different way if I really want to know.. I might say " How are you feeling?" " How are you getting on" Juney

Just been discussing this with my husband who has aspie traits but no diagnosis, he says he struggles with this, and can't see the point, he has just said to me that if someone at work asks him if he is alright etc.. he says " well I'm here aren't I" !!!! He has just come in from the local shop and said a neighbour has just asked him how he is and he just said "OK" nothing else at all. I must admit I did say to him that was a bit rude!! He said "well he was obviously OK." I must admit that since my son's diagnosis I've understood my husband so much more!! A few years ago I would've just got cross with him!! Anyway, like Emily says have fun with some other stuff.

In my family's case I am sure it is genetics. My husband is definately an undiagnosed aspie. Talking to my Mum in Law it sounds like her father had a lot of aspie traits. My NT(?) son has some aspie traits as well although not to a degree that they cause problems. My sister in law is just in the process of having her son diagnosed with aspergers. My pregnancy was normal, birth normal, was 2 weeks late. Development seemed normal until about 4/5 years old.

Schools that have learning mentors should be able to help with anger management programmes. I've just spent the summer term on a placement with a learning mentor team in a secondary school. We did a lot of anger management work. So it might be worth contacting school - particularly if anger causes problems at school. For me, my son manages to control himself at school, then it all bursts out the minute he gets home. I agree with Sue as my NT son gets older he seems to be developing more anger to do with some of the issues that arise. I went on an NAS Supporting Siblings seminar and it really made me look at my expectations of him and I've been able to work on a few things in that area. very basically - CBT - is looking at the area of concern and trying to change the thought process that makes it happen. Rather than spending a lot of time looking at past history. That is extremely basic and someone else might be able to explain it better. I am not sure of the success rate. juney

Have you looked into doing a basic social story type thing with pictures of the walk that you are going to do. I make a lot of my own story boards/visual aids and they seem to help. I was thinking earlier today that I wish I had done them when he was younger, but I thought that he would learn by just exposure alone - I dont think this was the case - I am thinking safety rules when out walking etc. I think if I had done a simple story board it might have helped. juney PS. I read this thread before I went out so said to DS do you want to come to the petshop with me - he said No, so I've said maybe you will come next time then. I think I do let him opt out too much!!

Its very worrying. My DS once nearly got run over bolting across a dual carriageway. I feel sick just remembering the occasion. The thing is if he disappears it then just takes longer to get home then it would've done, and also surely the thought of getting lost is more anxiety provoking than staying with the rest of the family!!

Hi Mumble, Don't worry about your what you're mentor says. I think this " how are you" thing is just an extension of "hello". this is probably of no help what so ever but if someone says to me how are you, I usually say "Not bad, thanks" - which means absolutely nothing really. A lot of the time I say " how are you?" because I feel I should say something. This is only people I know though, if its just someone I am passing who say hello to me, who are staying at the same place etc - I'd just say hello, or maybe just even smile. So, just be yourself, say what you are comfortable with. Have a brilliant trip away. juney

Thanks Emily -reading about your experiences has been really helpful, your advice and suggestions are really good, and that is I think the balance that I am trying to achieve, I haven't quite got the balance right as I tend to do a lot of shopping of the net, and so shopping trips are limited, and do need addressing, and I do tend to go on my own. When we do go we do need to take a list. I have been know to try and go in a shop that's not on the list... you can imagine the response that gets. he gets the chance about family occasions, I can't remember the last time he went on one, he didn't attend a wedding in 2004. He does spend weekends with his Grandma though. I will definately print of this thread to refer to as there's a lot of good points and tips. He will be using the bus to get to secondary next week - he's good with using buses except for saying "40p please" I think he will end up just having to give the money over. He will have his older DS for support. Will get thinking elun. how old is your DS? juney

Hi Paula, I agree with you there. We've come to an arrangment that we go out twice a week - usually for about 90 minutes if I am lucky. I can sometimes push it to 3 times a week if where we are going is expectionally quiet. I'm resigned to spending the bank hol weekend in the house, I am hoping to get him out in the garden somewhow to at leat get some fresh air. When I said he needed fresh air a couple of weeks ago he said to me " Define 'fresh air'"!!!! lol!! juney

Hi Shona, Not sure I can be much help.. I think if it was me.. I'd read up on depression and ASD's. I think NAS do a little booklet, and would have a look at what strategies I've got in place, and whether they are a help or not working, or in some cases I've let them slip. ( which I often do!) Is it just the stress of the holidays.. lack of routine...lack of structure.. a need to be in control. If so what can I do ... if I still felt unhappy or concerned i'd probably get in tocuh with professionals saying I had concerns. Its a difficult call. My DS has started getting a bit obessional about dirt recently where eating is concerned so I can empathise with you on that. all the best juney