Question for parents of a child with AS

[I'm Aspergers Not Stupid]

Hi, I have AS, and I personally want advice from parents of someone with it. I'm interested in how it affects parents rather than the person with AS themselves. Personally I find it hard to discuss stuff like this with my parents, not because there not supportive, but because I don't really understand what I'm doing different to other people without Asperger's. I thought being diagnosed would have answered questions I had (that was 5 years ago). I think the main problem is, even though I have Aspergers, when I'm asked how it effects me I can't answer them, because personally I can't relate to how others are, and being able to say what's so different about them compared to myself. I think people assume that I only had this when I was diagnosed like I caught it or something, when actually this is how I've always been and I cant put myself in there shoes just to tell them how I find certain situations more difficult. Anyway I've just noticed I got fixated with what I was typing and went a little off subject. But Yeah...I'm wondering if there is certain things your kid does that effects you in one way or another, gives you a hard time, gets you worried, yadayada. I think If I can spot a situation what effects other parents, maybe I can be mindful of a similar situation with my parents, try to make that situation less of a situation and maybe put a little pressure off my parents themselves because I don't want to be ignorant and assume that I'm the only one affected by Aspergers.

Edited October 7, 2009 by I'm Aspergers Not Stupid

[minerva]

Hiya, Thats a really good question! It is kinda hard to answer because just as you have never known yourself to be any different, we will never have known our child to be any different.

 

I think the hardest thing for me to understand is the fact that he cant talk to me about things that make him anxious, he doesnt seem to know why he gets upset/frustrated/annoyed so we cant avoid the situation. As a Mum your natural instinct is to "fix" everything. So when your child is upset you want to hug them, when they are anxious you want to be able to reassure them but when they arent able to explain the problem you cant fix it, leaving a very unhappy child.

 

When your child is miserable it reflects on the whole family, in our home his feelings come out in violence, verbal abuse, self harm or running away. All of these are very traumatic for everybody involved & I end up feeling completely useless because again.....I feel its my job to "fix" it, I want to fix it but I cant

 

When it comes to the general day to day things its purely fascinating! He is outstanding at Military Aircraft recognition, I mean who knew there were 24mks of Spitfire, let alone is able to tell the difference between them all!! His reading skills are way ahead of his years and have always been, in fact he taught himself to read before he started school!! He is currently writing a book, although is such a perfectionist I doubt he'll get to the end as he keeps restarting!!

 

I am incredibly proud of my son the majority of the time. For his skills, his acheivements despite missing out on 4 1/2 years of schooling, his lovely manners!

 

If only I could be supermum and fix the emotion!!

 

Not sure if thats any use, got a bit carried away lol

 

 

[Kathryn]

Thanks for asking what it's like for parents - as a parent myself I appreciate that very much.

 

Speaking purely for myself I found my daughter to be delightful, interesting and wonderfully rewarding as a child, and I loved spending time with her. The trouble started when she went to school and other social activities I started comparing her to others and worrying about her development and in turn, questioning my own parenting skills. If we had been one family living alone on an island I would probably have lived in blissful ignorance! I have to say that nowadays she is now a delightful, interesting and rewarding young adult who I love spending time with.

 

Perhaps others here would agree that a lot of parental stress comes not from the child him/herself, but from having to engage with professionals (especially in education) and others in the community who don't understand and who misinterpret our child's behaviour. To answer your question - I'm not sure what you could do to take the pressure off parents, but any indication that you want to understand how they feel, and are willing to discuss ways of making things better for yourself and them, would probably be greatly encouraging to them - that's how I'd feel, anyway.

 

Openness is everything. The child who cuts themself off, says nothing, shuts themself up in their room and doesn't emerge for hours or days on end is always worrying.

 

K x

[I'm Aspergers Not Stupid]

@minerva

 

Judging from what you said I guess what's so difficult is that you want to understand how to help, but he doesn't understand how to explain. I think why its so difficult to explain is because there's so many things you want to say and explain but It's hard to find an order to say it in. I find it easier to write how I feel down because its easy to make an order out of it when you write it down. I started expressing my feelings by writing lyrics as an outlet. I'm not sure what your sons writing about, but if he enjoys writing maybe asking him to write down how he feels might help, because personally when I'm told to explain, I'm worried I'll explain it wrong and having the time to explain it all correctly. Where as when I write it down, I can write it down in little pieces as i remember them, making it less confusing. I find it easier also to type on the computer, because its easier to organize what you want to explain, with paper if I make a mistake its basically the end of the world and I rip it up.

 

I'm not sure what your Son finds hard but maybe if I said what I find hard it might help you, personally I hate many people talking, because I find it hard enough to follow one conversation (from the listening, to trying to work out in what way he's saying it, blah blah blah). That can be from listening to the TV and having someone talking (doesn't have to be to me), to a phone call with people talking in the background. I hate noise in general. Another thing is I feel like if I got an idea, I feel I must do it at that period of time otherwise I'm worried I'll forget what I want to do, and if it doesn't work how I want it to I get angry. I don' deal with interruption very well, at the time I'm doing something it feels a must to do it, nothing else at the current time matters, I must do it otherwise it pretty much makes my whole day bad. I guess I'm bad at multitasking as a whole.

 

Ohh, and this might help you a lot, if I'm not asked the right question I wont give out right information, when I went through a bad period many times information would be said, and my parents would be like "you never told me that" and I'd say "well you never asked me". I guess that there's a rule that others know that I don't, like there are certain things that are expected to be mentioned. I also have a bad habit of blowing one part of a conversation out of proportion, if I don't like a word that's been said I'll feel offended and get on the offensive, for example I rather the word saying to telling, because telling seems more of an order than saying. So when someone has said "all I'm telling you is" I have blown a whole argument about it. I guess I can take thing too literal. I'm not sure if your son has words that trigger him, but it might help if you know, because again I wasn't asked and when I was told "well you never told me" I'd say "you never asked". I guess there's an assumption on both ends that parents believe some things are clear and vies versa, one expecting that a grey area is easily seen, the other expecting that the black and white reactions should be common knowledge.

 

Anyway I know this thread isn't about helping you, but I feel if it might be of use then I might as well type it, specially when you taken your time to try and help me.

 

Also to let you know I don't feel that you got carried away, if anything everything you said was of great interest, and I can relate to your son with writing. Me myself I'm obsessive with lyricism/creative writing like wordplay, metaphors and all that and even if at the time I think its good, I'll pick wholes in it later...get rid of it and start again.

 

 

Sorry about the essay, but yeah what you have said has been helpful and I hope what I've said might also.

 

 

 

@Kathryn, I just noticed you wrote something, thanks for your reply, I'll give you a decent reply when I get some time to write, but just to let you know its very appreciated.

Edited October 7, 2009 by I'm Aspergers Not Stupid

[Mum of 3]

with paper if I make a mistake its basically the end of the world and I rip it up.

 

From the above, it sounds as if you might do something that my son does, which really upsets me...He's obsessed with everything being perfect, and this includes all of his toys (he's only 6. so toys are his world!).

If something breaks, or gets lost, it doesn't matter how great the toy is, or how insignificant ( to me!) the damage is, he refuses to have anything at all to do with that toy, and often all the related toys, ever again!

For instance, he had a collection of Take-Along Thomas trains, which he loved and played with all the time and his grandma got him a Molly from Italy. One of Molly's wheels stuck, and he not only refused to play with Molly, he gave up on the whole set of trains...but not before spending months crying over it daily, and begging his gradma to go back to Italy to get a new Molly!

He also has a habit of finding problems, like a broken toy or a missing piece of something, and insisting it's put right straight away. If I can't fix it that minute, he will throw the hugest tantrum. When he gets like this, I call it the 'One hundred impossible things to do before breakfast' phase, because that's what it seems like to me...He leaps from one impossible thing to another, having a bigger and bigger tantrum each time.

I often wonder how much of this is just inecurity/anxiety, and how much is within his control, because I must say, it sometimes looks to me as if he's doing it just to wind himself up and alieviate some boredom!

If you can shed any light on this, and how I might deal with it, I'd be most grateful!

[I'm Aspergers Not Stupid]

@Kathryn

 

Thanks i found that very helpful. I had a little chat to my mum about it...mentioned a few things I knew was a problem for me, and in turn she said how she feels about how I react to them said situations. Some either very difficult for me to change or unavoidable though, but now I understand how she feels about somethings, even if it is impossible for me to change, at least if I react to it that way, I can attempt to apologise about it later.

 

Thanks very much for that.

 

@Mum of 3

 

I'll try, Um I guess its the combination of being black and white minded and having an obsessive nature. Everything is either good or bad, true or false, is or isn't and so on and I guess that's why its so difficult to except something which isn't perfect. Its either fixed or broken in that sense, not slightly damaged. Combining that with being obsessed with it makes it very difficult to deal with and basically sets the tone of your mood for a while. It also makes me worried if something isn't right something else might not and I wont feel right unless I have checked what I'm worried about. That might be why he keeps "finding problems" because from personal experience if I'm worried something...I wont be able to concentrate on anything else unless I know for sure its fine because otherwise I'll be worried about it in till I do.

 

I guess the reaction may seem extreme but to me personally, its an extreme situation because of the black and white mindset. For example I was trying to cook a burger (I think it was anyway) and I put it in the microwave for the time it said, I took a bite and it was cold...I was so disappointed I threw the burger and didn't bother making anything else. I felt I followed the instructions correct and thought I could follow the instructions correct again on other foods and they'll not be cooked too. It's sort of like applying one rule to another, For example its considered good to be honest, but then there's sometimes its better to say a white lie or whatever...yet because being honest is what you think is right...you'll apply that rule with every situation, even if to others it might not seem the most ideal situation to apply it. Pretty much black and white again, Its difficult to try and find a middle ground, and even though I'm aware there might be a middle ground to some things, It's still a struggle to find it especially if I'm obsessed about the problem, because I won't even think about a middle ground and deal with it the way that comes natural/automatic to me. It's easier said than done sort of thing.

 

Well that's my I trying to explain it, hopefully it helps you.

[bikemad]

Hi.

 

My partner reckons ive got the same as my son and just not been diagnosed, but that might go toward explaining why a lot of what he is like or does does not seem 'odd/different' etc, but the biggest thing I find hard is seeing him constantly bullied for being different and having no friends at all...he says he is ok about it but I can see deep down it upsets and hurts him but if he attempts to discuss it he cant he just cries.

[I'm Aspergers Not Stupid]

@BikeMad

 

I've been told that it can be hereditary. It seems when someone is diagnosed with it, you notice members of the family with a similar way of dealing with things and now many of my family believe my Granddad has it as well. I cant tell you this as a fact, but if your son has it then it's possible you might have it as well if what I've heard is correct.

 

And I think I understand what position you're in because I myself used to tell my mum I was fine and kept it to myself. I did it because of a sense of embarrassment and because my mum wasn't doing well at the time, I thought if I bottled it up I'd be helping her (which didn't end up the case just made it worse because you can only bottle so much). Not sure if its a similar situation for your son but maybe you might want to check if it ticks any boxes.

 

One idea I think could be worth a thought is checking if you do have the same thing as your son, because if you do maybe It'll give him some piece of mind that he might be the same as you. I love the fact its possible my Granddad have Aspergers, I have a brilliant relationship with him, more of a best friend relationship than a grandparent relationship, because I feel its easy to relate to him and there seems to be a good understanding between us. Why I'm suggesting it is because personally I remember wanting to grow up like my parents, they had a big sway in what I wanted to do. I found my parents cool and all I really wanted to do is be like them. My dad could shave his head, I'd want to do it, my mum could say she liked me wearing something, I'd wear it. I had an utmost respect for both and now I think of it, they probably decided what was cool for me (not intentionally). Maybe if you try to find out (and possibly discover you do have the same thing) maybe you can make that seem cool, like you got a little gang, and then if that's possible maybe you can get him to be more open because of the feeling of being to relate with you.

 

It might sound like a stupid idea, I don't know...personally I'm trying to understand the situation using me as the example, but maybe your son thinks different all together, I hope it might possibly help though.

 

Also I honestly hope your son is able to make friends very soon.

 

 

It seems the biggest worry for parents (which I can do something about) so far is actually communicating with there kids and trying to understand, so I guess it might be helpful if I tried to be more open, which is a shame because I'd like to think I'm very open as long as I can explain what they want to know. Anyway, thanks to everyone who replied and I'm still interested in more opinions if anyone wants to spare any.

 

Thanks (and I hope I'm not irritating people by the amount I'm writing, It's just I'm very interested about this.

[bikemad]

Thank you so much for explaining it from what would be my sons view point......it does make sense definatly...thank you for taking the time to reply.

 

By the way we are in South Wales too.....

Edited October 8, 2009 by bikemad

[Pentoon]

Hi, thanks for this, I have found reading the replies very interesting. My son is seven, he is very intelligent and can be wonderfully friendly. The main problem is that when he gets into trouble it spirals out of control and he frequently ends up insisting that nobody loves him, nobody cares for him and nobody is his friend. This has been especially difficult this week as he has really acted out at school. He has been at this school for only four weeks and, overall, he has settled in very well. The school is very used to and very supportive of ASD kids, it is a smallish school with much smaller classes than his last school.

 

I realise the change of school (actually change of town, we moved to York from another town this summer) will have been stressful for him though he has outwardly displayed happiness and excitment. However this week he worked himself up, first in PE when he refused to do as he was told and started making demands on the teacher (insisting that he would only be in the team he was told if they would move his friend into it). Then, at play time it was raining so he started playing with an indoor toy. The teacher noticed that the rain had stopped and told them all to go out. He refused and, to cut a long story short, he told the teacher to f*** off (still trying to work out where he picked that up from as we have a strict no-swearing policy at home and he usually loves to tell tales on people if he thinks it will deflect the blame from him).

 

I understand why he got angry, that he had a different teacher for PE and he finds it stressful and doesn't recognise their authority and I understand that the sudden change of plan at break time would have stressed him out but his behaviour is unacceptable, I can deal with him being angry but I won't allow swearing. We gave him a punishment at home which involves answering questions about some books so that he has to practise handwriting. The head of school told me that under the rules he should have been suspended and a note put on his permanent record but he didn't do that because he said, given the circumstances it wasn't fair to tarnish my son's reputation for his entire school life.

 

Then today I got pulled up by his teacher because yesterday he had left his desk and the work he was meant to be doing and had gone up to a physio ball which the heavily pregnant teacher uses to sit on in front of the class. He slowly pushed a pair of scissors into it until it burst then lied about it. He did, eventually, tell the truth after we had talked it through a few times and we thanked him for that but, again he got his worksheets to do because he can't go round breaking other people's things.

 

These are typical examples of what I find most difficult as his parent. I would dearly love to know any way s to help him cope with his anger, to assess possible consequences of his actions (both phyysical, like the ball breaking, and socially, like getting in trouble) but most of all I woul like to know how to help him out of his black moods. I try to explain that I love him but it is the bad behaviour that I don't like but he refuses to believe me.

 

Also, if you can find a way to stop his constant, tuneless humming I would be one happy mum!

[I'm Aspergers Not Stupid]

@Pentoon

 

[Warning...if you plan on reading this is might take a while]

 

Um I'm not sure if I can give you a very good reply here but I'll try. Um first I'd like to say that children learn swear words at a young age (not trying to say it in a way that you haven't been one yourself) because many parents don't have the same view as you. I've seen other parents when I was younger swearing in front of there kids or in some cases telling there kid to swear at someone for a laugh. Obviously then that one kid who's in a group of kids start flaunting it like a cool word and then the others pick up on it. That's what I noticed in school.

 

Um the friend thing, me myself when I was young I only hand one or two friends and basically followed them like a shadow. I also got jealous that everyone else seemed to make friends easy and I could barely get any...I found it easier to get bullied than getting friends. Anyway because of me only having a short list of friends, I valued them so much that I'd do similar things like refusing to do stuff unless I could do it with a friend, because I didn't want to be on my own with people I didn't know or had problems with. I guess it was like a sense of security doing something with someone you like. I'm not sure if that's the same scenario but it might be worth checking to see if that's why he reacted that way.

 

The indoor thing I'm not quiet sure of, I'm guessing it was a personal preference staying in there...maybe he wanted to stay inside because he had the toy and wouldn't have to interact with anyone outside. Another thought is...Aspergers kids tend to get fixated with things...possibly it could have been with that toy and if there was a rule like lets say "do not take indoor toys outdoors", my personal first reaction if that was the case would be to try to stay inside with that toy. If that is the case maybe I'd want to stay there to the point of swearing at a teacher. I've previously swore at a teacher also for thinking that said teacher was singling me out. I'm not sure If any of them scenarios are what happened but that's me thinking out loud of reasons he may of done it.

 

Oh and the change of area/ teachers and such might very well have caused a lot of the problem but I'd keep an open mind. When I did things that got me punished it was mainly cause of many combined things I was unhappy with...you know when it rains it pours.

 

The ball thing I cant really relate to at all or think of a scenario of why he'd do it, all I can think of is seeing it as a sense of playing OR actually now I think about it when I was younger kids used to use me for entertainment. They used to give me ridiculous demands that would no doubt get me in trouble, and I'd do it willingly thinking I'm in a part of a gang now, like there all now my friends...in till I did it of course then they'd disappear so they're not blamed. I'd look into seeing if he does a similar thing, but again I cant guarantee that is the case.

 

I know this is an essay but last thing I'd like to say is...when I went to anger management they advised to finding an outlet for frustration, like exercising ,marshal arts, sports...basically physical activities. I'm not sure if that's what you wanted to hear but that's what I was told in anger management. Personally now I take gym once a week and I feel a great relief doing it...and if I'm still angry afterwards...I'm pretty much to tired to want to do anything about it anyway. I'm sorry I cant give you any real good advice on his black moods, all I can really say is be wary of some of the situations I've mentioned...especially the one about kids using a kid for the enjoyment of seeing them get in trouble because I think trying to help him avoid trouble is the main way of making him happy.

 

Oh and to answer the very last question. Silence is golder, duct tape is silver lol (okay maybe not) Hope something I wrote might help.

[Pentoon]

Hey, thanks for that (I had a good giggle with my partner about the duct tape).

 

I think the thing with the ball was an experiment of sorts. I think he gets an idea in his head saying "I wonder what would happen if..." then carries it out till thie bitter end. He loves science and experiments only he doesnt always plan his very well!

 

Thanks for the info about the physical activity, we will try it out, he loves cycling and there's a good big park right near us so I can bob him out to it any time.