Help with my AS daughter, please!

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I think when it comes to extra circular activities, always attend a class beforehand. Or if that is not possible, even just show them the classroom. Something, anything that will prepare them for it.

It could have been any number of things that set her off: the change in routine, the social aspect, the sensory experience.

I know what she means about not liking the room. Some rooms just bother me. I can't be in them or work in them. Often it's the lighting and the layout that bugs me. Design is incredibly important to me, as is lighting. If it's the wrong kind of lighting or what not, I just cannot concentrate, it usually ends up giving me migraines. And if the design is wrong, either not functional, or very asymmetrical in the wrong way, or just very bothersome, I often have trouble being in there.

I should note that there are upsides to both of those things, they make me fantastic at art and design today, but you won't get to see that side until she's older. If she's very artistically inclined, as you say, then I put my money on the lighting since she refused to even enter the room. If it was about the design, she probably at least would have walked in and trying to find somewhere that she was comfortable, but if the combination of both was unbearable, I would have been back in that car in an instant no matter what anyone threatened me with, especially coupled with the change in routine, new place, new people, social situation, sensory crap etc.

Wow, that is very interesting. She did enter the classroom and wait on line with me to check in. Then they put the bracelet on her. She immediately took it off. I told her to take a seat and she wouldn't, then she just clung to me and followed me around, grabbing at me and not saying anything. She often does better if I leave, so I tried, but she followed me out into the hall. But then she ran out the door to outside.

So the design of a room could be unbearable for you? Wow, that is terrible. Have you learned through the years to deal with new situations and new places better so you can have new experiences? Sometimes it is just not possible to visit a new place before the actual event or activity.

I am almost done with Aspergirls, I am at the very end of the book. To be honest I found reading it a little depressing. I have lots to look forward to for my daughter.....mutism, deep depressions, she will be burning bridges with people left and right, probably won't be able to maintain a job etc. I choose to believe we will find some interventions that help her so she won't suffer like that, I need to think positively and be hopeful.

^^^
Aspergirls is useful to some extent, but you have to remember the author was not diagnosed, so you already have a head start. There are those like myself, who go to college, hold gainful employment (and have for years), have a few good friends although I don't see them too often, and even some kind of a social life (mainly due to my interests). Yes, I have burned bridges, but only rarely and never without a good reason, and none that I regret. Many of us don't have mutism, or if we do, we only experience it in certain situations (for me: usually when I am very embarrassed). Social skills can be learned either by mimicking or by intellectualization, it will just be an energy sucking activity for her. She may have to deal with spirals (depression) but there are strategies you can use to combat them before they get past the first stage. Not everything about this is negative, I love my interests and I love my life because of them, I get to experience much more happiness because of them than most people get to in their lives.

Yeah bracelets bug me too, I have never been able to wear jewellery or a watch for that reason (don't even get me started on things that go around your neck!). I have gotten better with that over the years, and can do it on the rare occasion now (but never every day) but I never would have been able to that at her age.

I can handle most rooms now, the majority don't bug me, it's just the occasional one I dislike and even the ones I dislike (although there is the exception on the rare occasion) I can handle but I would not have been able to when I was younger.

With the ones that bug me, it helps if I walk around the room and try a few spots. Generally I can find one that is at least bearable if I am given the time to do so. Sometimes it takes 5 or 7 times to get there, but I usually manage in the end. Getting into a routine with it takes care of the rest.

I expect the thing with the room was just the "last straw" so to speak, with everything else going on. She may not have even realised or been able to verbalise all the other things that bugged her and put stress on her, so she focused on the one that did so the most. Often I could not verbalise what bothered me, only lately have I been able to pinpoint that it is usually multiple things, but whenever I was asked to explain, I often chose the thing that bothered me the most. Even if that thing had been fixed, I still would have been uncomfortable.

It is interesting that you describe her as oppositional defiant. I was often called "impossible" as a child, but in reality, the explanations the adults offered me for their rules were usually not good enough for me (as in, they did not make enough sense or contain enough logic or reason to constitute a "rule"). This was often made harder because I was considered intelligent, I could usually see and point out the holes in their logic, even if I didn't do so verbally (because I assumed they already knew the holes in their logic), so I would just refuse to do the thing or follow the rule.

Some kids do just refuse to do something or follow a rule, just because they hate rules. The more intelligent one however are more likely to see why the rule doesn't work and therefore refuse to follow it because they know it does not make sense if you follow it to it's full logical conclusion (insted of halfway like most adults do when they make it up to suit themselves).

Yes, I call her impossible too! I am wondering, did you ever feel like you were either equal to or above your parents? Did you feel superior. We feel like our daughter does not get that she is the CHILD and we are the PARENTS.

I know that we are not horrible parents because our other daughter does not act this way. She respects us and if she does something wrong, she is very sincere in apologizing and feels true remorse. She (DD5) is also extremely empathic, to put the point where she will get upset if someone else gets hurt. Our DD7 on the other hand shows no remorse, shows no empathy or sympathy for others. We are always talking about how we need to consider other peoples feelings, but it is lost on DD7.

It is not enough to point that out, is what Kjas is saying. There is no implicit, "we are the bosses and you are not" that makes sense to her.

So what do we do???

I never really found the answer, but my daughter is much easier to deal with now than she was just a few months ago. The only thing that I have done is to allow her to wear gym day uniform (trousers and polo shirt) 5 days a week instead of 2. She used to wear a blouse and pinafore on the other 3 days and I noticed that she was more compliant on the gym days (not perfect but a bit better). So I decided to forget the pinafore and blouse. I don't know if this is the only reason she has changed or if she has just matured, but things are so much better than I ever thought they could be.

As for Aspergirls, it is good. But, as Kjas says, remember the author is undiagnosed. If she has Aspergers and was a child today, she would have stood a much better chance of getting recognised and having help targeted at her. I'm undiagnosed too, but suspect I'm on the spectrum. Although my daughter is probably further along the spectrum than me, I'm confident that she has the chance to do better than I ever could. She's getting help with social skills and her concentration problems have been noted and addressed. She's less likely to suffer from low self esteem than me, because her teachers will hopefully understand why she didn't finish that task, etc. Instead of telling her that she's a clever girl, so she could have done better, they'll praise her for her achievements. This will be the same for your daughter.

In my opinion, you have to clearly spell out why it is that your judgment is more important than hers. Not in an unkind or bullying way, but in a way that makes clear that there's a reason why you're in charge of everything, including shelter, clothing choice, food choice, etc. It has to seem *logical*, above all else.

mv is exactly right, you must provide a perfectly logical explanation for everything she questions.

Yeaup, this is the thing. You standing there saying "Do what I say because I am the adult" is never going to work with her. Ever.
You are dealing with a person who has absolutely *no* regard and pays not one iota of attention to the social hierarchy because it means nothing to her and that includes family and parents.

Often my guardian had to explain down to the detail why they did things the way they did. And then he had to put up with me questioning him about it until I was fully satisfied with the answer. Basically, he had to treat me like an equal from a young age (respect her abilities but don't overestimate them), and it worked, he was better with me than any other guardian I have had. Often instead of simply giving me the answer, he would make me find the answer myself. That required more work on my behalf, it also produced better results. I had to ask for help when I needed it. He would never tell me not to do something, but I learned to ask "Do you think this is a good idea?" and if he honestly thought it wasn't, often the answer was "I would not do it, but it is your own choice." in other words, he never did forbid me from doing something (which was smart, because it he had of forbidden me and I didn't respect him or his judgement, I would have done it anyway). This means you have to trust her more and let her make her own choices, but it also means she has to take responsibility for her own choices, which will be a very good thing to start learning now rather than when she is 21.

My other guardian who would stand there and do the "Do what I say because I tell you too", I would simply ignore or say "If it's a rule, then why aren't you following it? That's hypocritical. People follow rules and that includes you. If you don't follow your own rule, why do you expect me to?". Naturally, that never worked. I just ignored him because he could never give me a logical explanation and did what I wanted anyway. In fact him, and people like him, never got anywhere with me. They still don't to this day.

There were times as a child when I couldn't cope with being in a group of people (even when I really wanted to participate in the activity) and would panic and have a meltdown if pushed. It wasn't exactly social anxiety, just the stress and confusion of dealing with so many people at once that I couldn't handle. Some days it was doable, other days it was not. I didn't have a diagnosis, and asperger's wasn't well known then anyway: I was just labeled a "problem child". It had nothing to do with trying to be difficult or defiant (that makes no sense to me) although I would later feel betrayed and be angry with adults who pushed me into that situation. I doubt at seven I could understand the concept of my mother paying for camp, or if I did, understand what difference it made to her if I went or not, since she wouldn't be able to get her money back either way!
Even as an adult there are times when I shut down and can't participate in an activity with a large group of people. I'll force myself to stay there, but just end up staring into space and not speaking, because the ability to do more just shuts down. Social activity is very strenuous. It's kind of like asking someone who's already physically completely exhausted or sick to run and play sports - willpower won't do it.

I've had a carpeting pattern or a smell give me a migraine, or some minor echo in the acoustics that was to me like fingernails on a blackboard.

Having read through the thread, it seems to me that it might be best to try and negotiate what we in the UK call 'disabled access' with the providers of your daughter's summer activities. When I say 'access', I mean a provision that enables her to take part in an activity on the same basis as everyone else, taking into account her disability.

The issue is not that she needs a wheelchair ramp or a sign language interpreter, but that she can't predict whether or not she's going to be able to function in a new situation. The only way she can have genuine access to the activity is to be able to try it for half an hour to enable her to work out how that room, those people and those materials affect her. Preferably before you cough up the money, but if they insist, you may at least be able to argue a special reason for a late refund if the half-hour doesn't go well.

I think most providers worth their salt would allow that, if you can find a simple way to communicate how hard it is for an autistic child with severe sensory and social issues (these phrases are 'ammunition' for the providers, not necessarily an exact representation of what is going on) to know whether they are physically able to join a new activity in a new environment. It's good business for the providers to make it possible for your daughter to have that half-hour – after all, if you have too many failures, you're just going to stop booking for these activities.

And if you can take the conflict out of these situations, you and your daughter may be able to develop ways of identifying what it is that's overwhelming her. It's not easy: I'm 53 years old, highly articulate, work in a job where I need to be able to analyse situations in detail, and I STILL couldn't immediately tell you what it was about a new situation that made me feel overwhelmed or that I strongly disliked. At least I know the describing words that I'd need for the purpose; your little girl doesn't.

I do realise that allowing her an easy get-out clause has major disadvantages – if she's oppositional, she'll probably try using the 'autistic argument' with everything that she simply doesn't feel like doing. All you can do is try to distinguish, at least some of the time, between things that genuinely distress her and things she's just feeling lazy about. And it seems to me that if she was trying to communicate complex information like the fact that there was something about that room she found really difficult (rather than the standard childhood arguments in these situations), then she was telling the truth.

I'm not a parent myself, and I can't even begin to imagine how difficult it is. All you can do is try and make sure that if you're punishing your daughter for anything, you're punishing her because she's being a pain in the you-know-what, not because she has AS. She can do something about being a pain if she chooses, but she can't do anything about the AS – nor can she explain it to you, at least not yet. That's a journey of discovery for you both.

think of having AS like this: your in a foreign country where you don't understand gestures and everyone is wearing a mask so you can't read there face.and everyone but you can understand them. Everything is very bright, like being in a dark room all day the suddenly walking outside, but all the time. Every noise is amplified as if every one was using a microphone. Every smell is overwhelming. touch is like rubbing sandpaper (or other unpleasant textures) on your skin.
now, stick your self in a new room with new people. Then have a strange person put a bracelet on you.

what probably happened to you daughter is all these things were going on and she was trying to take it all in, then some one puts a bracelet on her and it was the last straw.

also, as I read earlier, the OP asked about her daughter feeling 'equal' with the parents. OP, your going to have to make her feel like she has input on what happens. Ask her for her opinion, but don't always follow them because then she will think she has to much control over you. Ask her (for example) "do you want to go go to the movies or the park?" if she sais park, but everyone else wants to go to the movies, pretend to consider it and say "oh sorry, the park is closed today, we can go tomorrow" etc.

when you try to punish her, if she asks why, saying "because I'm the adult" or "because I say so" won't do it. You daughter needs every little rational detail, or it won't make sense.

I hope I helped

You also said that she can't really describe what bothers her about the room. I know that I can properly explain things better in a written form better than saying it out loud, especially when describing an experience or what something looks like.

Maybe you could see if she'd be willing to draw or write how she feels about the art classes. That might clear up what's going on a little more, and it may even help her relax a little bit.

I am not a parent, but when I read the original post, something sprang to my mind about my own childhood that may be of use.

I have never liked having extra-curricular activities. Even activities that I enjoyed and was interested in. All throughout primary (elementrary) and high school, I felt school was too demanding to have any other responsibilities. It wasn't the academic work I found demanding, but rather the rigidity and social expectations of it - having to keep up with other people, having to do certain things by a certain time, being told constantly what to do and when to do it, not having any real power over myself and constantly being forced to socialize with other kids who bullied me constantly. I just felt that the time I had outside school was mine, to do as I wished with it and I didn't want anything to intefere with that. Not only do I have AS, I'm also an introvert which meant that socialization was doubly taxing for me. If your daughter has a tendency towards introversion coupled with social anxiety and sensory issues, perhaps she feels that art camp would take up too much time that she could spend by herself.

I'm at university now and it's much less demanding for me than K-12 schooling. I'm given a lot more autonomy and I only have to attend a couple of days per week. Now that I have more time to myself, I don't feel like extra-curricular acitivities would be too much to handle and I actually want to take a couple of things on.