Longstory, I know that it can be quite frightening at first. For me it was actually a relief. My two older boys (19 and 17 now) had been known to paediatrics etc since they were 4 and 6 and we had all sorts of "diagnoses" given us from SID and Dyspraxia to just plain "lazy and objectionable". Because they are such high achievers academically, everything else was more or less brushed under the carpet. DS1 is at St. Andrews uni now, one of only 9 young people on his course, he has a Grade 8 in Sax, is a champion public speaker and has addressed Burns suppers all over the country, amongst many other achievements. DS2 is one of the very first people in Scotland to have achieved Level F in MAths in P6 (age 10) in Scotland when this is the ultimate goal of the 5-14 curriculum here, and most pupils never achieve it. SO, nobody would really take the situation with them seriously.
The crisis point came when DS2 was 11 and ready to make the transition to secondary school. The LA refused to give him any support at all, backed up by the ridiculous head teacher of our PS. So my HV, who I had a good and long relationship with and who had always said that there was something not right about the boys, referred him to the community paed, saying that she had seen him while visiting my youngest 2. The comm. paed immediately referred him to the consultant who, almost instantly said that he had AS. So both the boys did the tests etc and were confirmed when they were 13 and 15. I was just glad that someone had finally taken me seriously, after years of either being ignored or told that it was my fault because I was a bad parent. OH and I were even sent to parenting classes and family behaviour therapy with the boys because nobody would accept that such clever children could be autistic.
Wise words, I'm not sure. You just have to hang in there. It does get a bit easier as they get older because Aspergers kids can learn how to behave in situations, even if they don't really get why. They can also understand their own situations and learn what to expect from themselves, which makes things a bit easier for them. It is still very trying though and worrying. DS1 is at uni now and looking after himself. I never would have believed that was possible, but he has adapted well. As far as DS2 is concerned, it will be a long time before he is able to do the same really. He can't be left here on his own for any length of time nor can he go out on his own or anything like that, so only time will tell. DS4 is 6 and is a nightmare, a raging ball of fury just waiting to explode. You always worry what's going to become of them and how they will manage in the real world. DS1 looks on it as a performance when he has to do something real worldy like an interview or presentation (all those years playing and speaking have given him a preternatural self cinfidence in performing, sadly not in real life though.)
There are some books by Tony Attwood that tell you about AS and the kinds of behaviour to expect. I've only ever read one of them because, by the time the boys were diagnosed I was so used to them anyway that the book didn't really tell me anything. The NAS have a good website and I think that you can phone them for advice if you need it, also.
What you really have to do, though, is work out what triggers any flare ups and either try and avoid the triggers or teach(yeah right)coping strategies. Shopping, for example, is very trying for DS4 and almost invariably leads to complete meltdown. So, I shop online mostly and, if I have to go to the shops, I make it as quick as possible and make sure that he knows exactly where we are going and what we are going for. New clothes are also a nightmare, particularly shoes, coats and pyjamas. So, I buy the same ones over and over again and secretly substitute them for the old ones. When this is impossible, I buy something very similar and hope for the best or let DS4 pick his own and hope that it works. It usually doesn't because picking things is one thing actually wearing them is another. He is almost impossible to calm, even with stress balls, bubble wrap, quiet room et al. so we just have to weather the storm until he can find his way out. He often goes and sits on the stairs until he calms down a bit.
DS2 finds living here, with the youngsters very stressful and often has a blow up. Not with shouting or smashing thigs any more, because he has learned that it's not acceptable to behave like that, but with angry hissing, increased pacing etc. I have taught him to remove himself from the situation so he either goes to his room or, weather permitting, into the garden. Then I have to make sure that the others don't follow him, which is hard because my 13 year old just doesn't seem to understand, but then he has his own problems. Periodically DS2 goes to stay with my mother for a few days, to give himself a chance to calm down. Shopping is also another of his triggers (too much sensory information), so, if he has to come, I have to tell him where, when, what and why and then stick exactly to the plan or he gets very upset.
Food was always an issue as well, although the older ones are much improved. They know that money is tight and if they don'teat what is made the chances are that they will be hungry. I have adapted to this as well over the years and seldom make things that they really can't eat. Youngest is still a nightmare in the food department. I have always just made dinner and if they wouldn't eat it, they have always been allowed a bowl of cereal or a peanut butter sandwich and a bit of fruit but nothing else. DS2 was particularly bad as regards food, always vomitting, even at the smell of cooking or the sight of certain things and it did take years of struggle. We couldn't even take him to McDonald's (or anywhere else) when he was younger because the smell of other people's food would make him sick, particularly ketchup or chips. You still can't eat a cheese sandwich in the same room as him or use sauce/pickle/vinegar or cook with onions or whatever because the smell triggers a sensory meltdown. And he still doesn't eat potatoes or a whole list of other things. But over the years, we have all learned to adapt, including him.
One thing that does help is routine. They need to know what they are doing and what is expect of them. We don't need an exact timetable although I know that some AS kids do. We operate more along the lines of "first we do x, then we'll do y.....". The boys also need to know in advance if anything out of the ordinary is happening, You can't just get up in the morning and say "today we'll go to the park/shopping/visiting Gran...". They do need some warning and for it to be reinforced a few times. It helps them deal with the stress of something different happening. AS kids also find any kind of change really upsetting. For example my DS4 will practically have a nervous breakdown if my husband tries to bath him. He only wants me to do it, because that is what he is used to. OH is normally not home from work in time to do it. You kind of just have to accept that these things happen and try not to let it get to you too much. Ds1 and 2 can't cope with surprises so we even have to tell them what we have bought for Christmas etc. We have to tell them about trips and holidays a long time in advance and keep talking about it with them because these types of things are especially difficult.
You should also try and get the school on side as much as possible. DS1 had a nightmare at school until his very senior years and the rest of the kids were withdrawn years ago because of a lack of support and appropriate input from the school. AS kids can find it really hard to cope because of the social aspects and all the sensory input at school. They can also react badly to things like changing teacher or classroom. It's a bit of a minefield, really. The other thing is that as they get older they get better at doing school but then, when they get home, all the stress of coping with it and acting the way they think they should spills over and they can really deteriorate at home. All I can say is try really hard to get appropriate support at school, but it isn't easy because AS is kind of invisible, not like being in a wheelchair or being blind.
Oh dear, I am sorry. This must be the longest post in MN history and it doesn't really say anything. And I am failing to read our history book to the DCs. I hope that anything I have said makes sense and helps rather than frightens you. If you have a definite question, just ask and I will do my best to help'