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Kismet

What do you say to members of the public who judge your child for being on the Autistic spectrum?

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Kismet   

My AS son is 13 years old and recently I have found that members of the public are less tolerable with him. His behaviour at times can typically be inappropriate eg he is too loud or not behaving in a way that is expected of a 13 year old. I am sure you get the idea. I am so frustrated and angry when people judge my son. As a mother I am very defensive and up until now I have been able to handle the situation without confronting the person but what I really want is to be prepared with something to say that will be affective enough to not cause a conflict between myself and the judgemental person or persons yet feel like I have defended my son and also not embarrass my son in anyway.

 

Can anyone offer any advice and/or share any similar experiences please as I feel absolutely heart broken in such situations and although my son may not communicate it neuro typical way I can tell that it is affecting him too.

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Cat   

My AS son is 13 years old and recently I have found that members of the public are less tolerable with him. His behaviour at times can typically be inappropriate eg he is too loud or not behaving in a way that is expected of a 13 year old. I am sure you get the idea. I am so frustrated and angry when people judge my son. As a mother I am very defensive and up until now I have been able to handle the situation without confronting the person but what I really want is to be prepared with something to say that will be affective enough to not cause a conflict between myself and the judgemental person or persons yet feel like I have defended my son and also not embarrass my son in anyway.

 

Can anyone offer any advice and/or share any similar experiences please as I feel absolutely heart broken in such situations and although my son may not communicate it neuro typical way I can tell that it is affecting him too.

 

I carry a communication passport for my son when I have to go to a hospital or any other appointment with my sons (I have two of them). I made it myself and it basically says that my sons have autism and that when they are stresed and anxious that can sometimes result in inappropraite behaviour and problems with communication. It is only the size of a postcard and it is easy to carry in my handbag. I have so far been astounded by the positive response when I pass this card over to people to read. I sometimes think that when we are stressed we end up saying things in the heat of the moment. Passing on a card to someone to read can say it all without voices being raised and drawing even more attention to my sons.

 

 

Cat

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KezT   

My AS son is 13 years old and recently I have found that members of the public are less tolerable with him. His behaviour at times can typically be inappropriate eg he is too loud or not behaving in a way that is expected of a 13 year old. I am sure you get the idea. I am so frustrated and angry when people judge my son. As a mother I am very defensive and up until now I have been able to handle the situation without confronting the person but what I really want is to be prepared with something to say that will be affective enough to not cause a conflict between myself and the judgemental person or persons yet feel like I have defended my son and also not embarrass my son in anyway.

 

Can anyone offer any advice and/or share any similar experiences please as I feel absolutely heart broken in such situations and although my son may not communicate it neuro typical way I can tell that it is affecting him too.

 

ignore the! Unless they actually say something to you, you know you are doing the best you can and their opinion REALLY doesn't mater one jot. If they have the audacity to make a comment about his behaviour, then you can say he has autism, or hand out a card/leaflet and say that in fact, they should be impressed at what a great job you are doing - he could be punching them in the face :whistle:

 

it's harder when its people you know (I could've murdered my mother several times over the last few days!), but strangers - me, who cares what they think?

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Kismet   

I carry a communication passport for my son when I have to go to a hospital or any other appointment with my sons (I have two of them). I made it myself and it basically says that my sons have autism and that when they are stresed and anxious that can sometimes result in inappropraite behaviour and problems with communication. It is only the size of a postcard and it is easy to carry in my handbag. I have so far been astounded by the positive response when I pass this card over to people to read. I sometimes think that when we are stressed we end up saying things in the heat of the moment. Passing on a card to someone to read can say it all without voices being raised and drawing even more attention to my sons.

 

 

Cat

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cmuir   

Hi

 

When my son was starting primary school, I was very much aware of how other mum's viewed me and my son - I was a soft touch and kiddo needed discipline. One morning I put the wrong colour of t-shirt on R. He said nothing at home or in the case, but waited until the bell rang and everyone was standing in line. Suddenly he starting shouting at me, saying he wished I was dead. I was mortified! He refused to go into school and a teacher came over to us. She was very nice and said 'that must be very upsetting for you'. I said 'actually, R has Aspergers and is upset because I gave him the wrong t-shirt to wear. What's upsetting and disgraceful is the gossip-brigade that are enjoying the entertainment - a child with a disorder becoming distressed'. For me, that was an incredibly liberating moment. It made me realise that R was the most important thing, not the crowd of gossip. There have been a number of other instances whereby I've been 'judged'. To be honest, some people are interested when you tell them about AS, but others don't want to know and don't care (frankly, they're not worth bothering about). I too have cards which I purchased from NAS website. I haven't used them as yet, but I think they may come in handy at some point.

 

Best wishes.

 

Caroline.

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Kismet   

Hi

 

When my son was starting primary school, I was very much aware of how other mum's viewed me and my son - I was a soft touch and kiddo needed discipline. One morning I put the wrong colour of t-shirt on R. He said nothing at home or in the case, but waited until the bell rang and everyone was standing in line. Suddenly he starting shouting at me, saying he wished I was dead. I was mortified! He refused to go into school and a teacher came over to us. She was very nice and said 'that must be very upsetting for you'. I said 'actually, R has Aspergers and is upset because I gave him the wrong t-shirt to wear. What's upsetting and disgraceful is the gossip-brigade that are enjoying the entertainment - a child with a disorder becoming distressed'. For me, that was an incredibly liberating moment. It made me realise that R was the most important thing, not the crowd of gossip. There have been a number of other instances whereby I've been 'judged'. To be honest, some people are interested when you tell them about AS, but others don't want to know and don't care (frankly, they're not worth bothering about). I too have cards which I purchased from NAS website. I haven't used them as yet, but I think they may come in handy at some point.

 

Best wishes.

 

Caroline.

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Jules71   

I like the idea of a communication passport, we've had a couple of parents go into school to complain about my son (this was before we received his official diagnosis), his class teacher soon sorted them out though.... I found it very upsetting the first time but now I don't give a stuff what they all think, I am sure we have been gossiped about (we live in a small village so you get that here anyway!). On the other hand I've had some parents who have been really lovely about him.

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LS2242   

Yesterday I was at a friends house who knows all about my son and has listened to all of my concerns / worries over a long period of time. She has always come across as understanding. I always believed my friend knew where I was coming from.

When my son asked for a drink yesterday she made a huge drink for them all (about 6 children) to share! I personally dont agree with sharing the same cups but it was not my house and I didnt want to make an issue. However he kept asking nicely for a drink and she kept telling him it is there. He was refusing to drink out of this cup and asked for another cup. She said no there is a drink over there for you all to share. He explained to my friend it has bugs on it (they where outside) so he was told to take the lid off, have a drink and then put the lid back on. This continued and he kept asking for a drink! My friend was starting to become short tempered and I could see that she found my son annoying. I could see he was beginning to become anxious and I watching this unfold, was starting to get a little on edge myself. In the end I intervened and said please could I make him another drink. This I did and problem solved.

 

I could see she was far from impressed, not because she was trying to help him and I stuck my nose in, it was more form the angle that he was annoying her and she had done a drink, so why was he making such a fuss!

 

This is supposed to be my friend (this is not the first time I have witnessed this sort of reaction) and I tried to explain again why it was such an issue. She made out she understood but gut instinct tells me she just finds my son hard work and irritating. To be fair my son is always telling me infront of her that her son has done this and that and said this and that, which quite rightly she sticks up for her own children, but my son is just being honest! She clearly has not understood anything i have said to her.

I have tried from my sons angle and asked him not to say thing to me in front of her about her son, but he cant hold it when we are there becasue whatever he has said and done has upset him.

Question is how do you respond to this. - Wider public, yes I would ignore it and not let it bother me but when it is a friend it has rather got to me.

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Cat   

I used to tell my sons to say anything about other people's kids into my ear and my ear only. OK so some people thought that they were being rude but it meant that if they had anything bad to say about someone else's child it went directly into my ear. I would then say thank you for telling me. Of course we then had to have discussions about why other people do not discipline their children for doing the things that my sons felt needed action. It took a very long time to get though to them that all parents have and use different rules. But we got there in the end. I lost many of my friends after my two sons were diagnosed with autism. Partly because they appeared to be unable to understand that my sons were not just being nasty or naughty and partly because I found it too much effort to keep on trying to get through to them. If only they could walk a mile in our shoes :(

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baddad   

I think it depends entirely on the circumstances/situation and the behaviour in that context - there can be no 'blanket' answers.

If my son is behaving inappropriately in any situation I'm usually the first to tell him, and usually in a manner that makes the position clear to anyone who might be within 'tutting' distance. I may offer some allowances/leeway for him because of his autism - especially when it comes to things like volume or comments that may appear inappropriate but arise out of misunderstanding or lack of social awareness - but in such cases would simply explain to anyone else involved that he has autism and can sometimes get/offer the wrong end of the stick. Other than that, I don't really worry about it, or other people's negative 'judgements', and I think you have to develop something of a thick skin because it's entirely natural (and in the wider context of social interaction and behavioural expectation entirely appropriate)for people to respond negatively to what they perceive as negative behaviours.

It is irksome, of course, to have people comment, but on the other hand it is also irksome to see antisocial, rude, aggressive or inappropriate behaviour ignored by parents because they take the inappropriate view that 'anything for a quiet life' is acceptable parenting or, if their children happen to be autistic or ADHD or something like that, that the usual rules and expectations don't need to apply or be applied. Not suggesting in any way, of course, that that is the case here, but it can and does seem to apply for many many children autistic and NT alike these days.

In a nutshell, I guess, and coming back to the opening question, I don't think the general public do judge children for being on the autistic spectrum, I think they judge them for their behaviour. If it is clear that the behaviour isn't being condoned - either because the parent is intervening to limit or sanction the behaviour or because the parent is offering them some insight into the behaviour (with a card or a brief verbal explanation) - then I think most people are pretty accepting. The small minority that are not just ain't worth worrying about. There's also that other scenario, though, where the child is behaving totally inappropriately and being enabled to do so, and where the parents rounds on anyone with the audacity to comment with a snarl and a 'he/she's autistic - what's your ******* excuse.' In those circumstances I can fully appreciate why members of the public might judge harshly, or even where other parents of autistic kids (self included) might do so.

 

L&P

 

BD :D

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LS2242   
Partly because they appeared to be unable to understand that my sons were not just being nasty or naughty and partly because I found it too much effort to keep on trying to get through to them. If only they could walk a mile in our shoes :(

I am thinking a bit like this at the minute. It is all becoming too much of an effort. I could, but would never dream of telling my friend a few home truths about her children. That aside, I am starting to get to understand that alot of people are not educated enough as fas as ASD's are concerned. Sad to say I WAS one of those people also not too long ago. There is more to it (my opinion) then what the books say as an overview of Autism. It is much deeper and as the naked eye cannot see it they just persume bad parenting! Well they are wrong!

The fact that my son is truthful makes me very proud. Why should this be negative? I agree learning to say it in my ear is a great idea and this I am def. going to put into practice.

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baddad   

I am thinking a bit like this at the minute. It is all becoming too much of an effort. I could, but would never dream of telling my friend a few home truths about her children. That aside, I am starting to get to understand that alot of people are not educated enough as fas as ASD's are concerned. Sad to say I WAS one of those people also not too long ago. There is more to it (my opinion) then what the books say as an overview of Autism. It is much deeper and as the naked eye cannot see it they just persume bad parenting! Well they are wrong!

The fact that my son is truthful makes me very proud. Why should this be negative? I agree learning to say it in my ear is a great idea and this I am def. going to put into practice.

 

Hi LS2242 -

totally agree with you that honesty is a good thing and to be encouraged, but this does highlight something I mentioned in my last post above about circumstances and situation and there being no 'blanket' answers. Honesty, is a good thing, but depending on circumstances 'honesty' can equate to 't1t-telling' and be tied to the reward of seeing other children get into trouble, or it can be a 'control' technique, or it can simply be seen by the children being 'told' on as disloyalty and thus become a barrier to social/peer acceptance and inclusion. Most small children go through a phase of this kind of 'honesty', and while it can sometimes be innocent, or start out as innocent, it can also be or be seen to be quite self-serving. In the wider social context honesty also needs to be tempered with 'negotiation' - the trade-off between absolute honesty and the necessary social skill of a grey area where honesty and other factors (like loyalty, or the feeelings of others, or social acceptance etc) are also a consideration. You've emphasised the importance of that skill yourself :

I could, but would never dream of telling my friend a few home truths about her children.
but then contradict yourself by saying that your son's lack of awareness in this respect is a positive to be proud of...

In most children, learning that 'grey area' comes naturally and the necessary skills are modelled for them by parents. While they are initially praised or encouraged for being honest they are also sanctioned or chastened when it becomes inappropriate. Changing the expectation for autistic children, or expecting wider society to 'be better educated' (make allowances/be more accepting) actually does the autistic child a disservice, because the very important life skill of negotiation remains unlearnt, and this disenfranchises and disables them further.

You've also said that people are 'wrong' to presume bad parenting, and I totally agree. But it is also wrong to ignore the possibility of bad parenting purely on the basis that a child is autistic (or disabled in any other way). Statistically, a disabled child is just as likely to be exposed to 'bad parenting' as any other child, and is probably more likely to have allowances made on the basis of assumptions surrounding the disability. Some of those allowances will be absolutely necessary, but the responses of parents will vary enormously depending on personal psychology/make-up, and allowancs will also be made on that basis.

Finally, the OP's post, your own post and CATS have all commented on the way in which wider society negatively 'judges'. Again, your own post shows that such judgements are not exclusively autism related, as your quote has highlighted some judgements you've made about your friend's children, and, presumably, the parenting abilities that have contributed to that. As I said in my earlier post, that is perfectly natural and understandable and even (in the wider social context) appropriate and desirable, but it does work both ways.

Please understand I'm not suggesting that any of these factors apply in either your own or the OP's cases - I'm merely highlighting the dangers of 'blanket' responses to very complex situations and dynamics. I think any child behaving 'innappropriately' needs to be made aware of it, and that anyone else involved should be offered some degree of reassurance in that regard.

 

Hope that's helpful

 

L&P

 

BD :D

 

L&P

 

BD :D

Edited by baddad

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Sally44   

Telling the truth or telling tales is a very hard lesson for our kids to learn. And even what they do 'learn' is not an automatic response, it is something we have attempted to drill into them and which becomes a process they have to think through in every situation. This is an area of difficulty that is part of the diagnosis and therefore will be a lifelong difficulty.

There are so many variations to how you respond in certain situations:-

Does my bum look big in this?? That's a tough one for any NT to work on, nevermind a child on the spectrum!

Telling tales? If it involves being bullied, something dangerous, etc then yes every time - but if the child has problems understanding if they are being bullied (or may feel they are always being bullied), or if they cannot predict the outcome of certain behaviour/actions, then they will over or under compensate by always telling or never telling anything.

Up till last year my son never told me anything. Even if he hurt himself or was in pain. Nothing.

 

Now he will tell me things. He snitches on his sister alot and I have to keep reminding him that it will get him into trouble. And it does because he gets pinched, pulled, pushed etc when I am not looking sometimes because of it.

 

Breaking rules?? Because things are not clear and are confusing alot of the time (especially around language and social interaction), learning rules becomes their way of trying to understand and cope in social situations. But they do not have any of the subtle stuff. So when those rules are broken it is very black and white to them because those are the rules that they apply to themselves as well.

 

With my son I try to talk (or draw a picture) that starts at the beginning and goes right through to the end outcome (or possible outcomes). So telling tales can lead to another child being told off and they maybe angry at you for getting them into trouble.

 

But even when you think your child has understood something about these rules, in the heat of the moment, when they are emotional, upset, angry etc then it is hard for them to be able to apply what they have learnt at that time. But just keep reinforcing it.

 

As my son has got older (only 9 now!), I have started to explain things in terms of "this is what will happen and you will just have to cope with it". Sometimes there is no good outcome. Sometimes you just have to grit your teeth until the social gathering is over.

 

Cats idea of whispering in your ear (if you have a child with a volume control!) is a good one. My son has done this, but has also insisted on 'pointing out' the person he is whispering about!

 

If there is something (like your example of the drink), that I know is going to upset my son. Then at certain times and in certain situations I would intervene straight away to solve it rather than let everyone get irritable and anxious. And sometimes that depends on how I am feeling rather than anyone else!

 

So no, I don't have any blanket policy. But I also pick and choose when is a good time to intervene or leave the situation for my son to cope or learn something. I agree that consistency is important, but you do need to judge the social situation as well. A day out at the park is different from a family wedding. So I would tend to intervene at a family wedding because the day is about the wedding and not about my son learning social interaction skills. But obviously I don't always get it right!

Edited by Sally44

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Karen A   

Yesterday I was at a friends house who knows all about my son and has listened to all of my concerns / worries over a long period of time. She has always come across as understanding. I always believed my friend knew where I was coming from.

When my son asked for a drink yesterday she made a huge drink for them all (about 6 children) to share! I personally dont agree with sharing the same cups but it was not my house and I didnt want to make an issue. However he kept asking nicely for a drink and she kept telling him it is there. He was refusing to drink out of this cup and asked for another cup. She said no there is a drink over there for you all to share. He explained to my friend it has bugs on it (they where outside) so he was told to take the lid off, have a drink and then put the lid back on. This continued and he kept asking for a drink! My friend was starting to become short tempered and I could see that she found my son annoying. I could see he was beginning to become anxious and I watching this unfold, was starting to get a little on edge myself. In the end I intervened and said please could I make him another drink. This I did and problem solved.

 

I could see she was far from impressed, not because she was trying to help him and I stuck my nose in, it was more form the angle that he was annoying her and she had done a drink, so why was he making such a fuss!

 

This is supposed to be my friend (this is not the first time I have witnessed this sort of reaction) and I tried to explain again why it was such an issue. She made out she understood but gut instinct tells me she just finds my son hard work and irritating. To be fair my son is always telling me infront of her that her son has done this and that and said this and that, which quite rightly she sticks up for her own children, but my son is just being honest! She clearly has not understood anything i have said to her.

I have tried from my sons angle and asked him not to say thing to me in front of her about her son, but he cant hold it when we are there becasue whatever he has said and done has upset him.

Question is how do you respond to this. - Wider public, yes I would ignore it and not let it bother me but when it is a friend it has rather got to me.

 

Hi.

I may have different ideas to some.However if a friend made one large drink for six children to share both of my children,my husband and myself would all have a problem with it.If Ben passed comment far from considering it to do with AS I would be supporting him.

I think it is your friend who has a problem with what is appropriate.

I am sure if your friend invited a group of friends for coffee and then gave them one mug to share people would think it strange so why should children all share one cup.

 

In your situation I would have asked for a fresh cup for either of my sons as soon as I saw it was an issue. I think it perfectly reasonable.If my friend had an issue with that then I do not require her as a friend.

Karen.

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Karen A   

I have a son with AS who is honest in the extreme.

He will stand up firmly for what he believes.

He is the pupil with AS in a mainstream secondary making a stand against presumably [NT] pupils behaving inappropriately.

He understands the rules very well and expects his peers to follow them.

In the last year he was prepared to give evidence in a case involving a pupil at school who was cutting other vulnerable pupils with the blade from a pencil sharpener.

He has also reported various incidents of bullying involving other pupils to staff.

He went to the love box music festival with his dad.He spoke strongly about people who spent the afternoon drinking and who pushed in front of others with no regard for them at all.

 

At times he has been called a snitch.Many NT pupils including perhaps his elder brother may well have gone with the crowd and kept their heads down in order to fit in.

 

I think the world needs people like Ben who are prepared to speak out even when it is not the Social norm.

There are enough people who do things that are completely unacceptable and it is condoned.

If enough people did not care about peer pressure,social norms or popularity perhaps more things would be challenged.

 

:rolleyes::rolleyes::whistle:

 

I think we live in a culture where celebrities with very few social values appear to be the main form of reference for a large proportion of the population.

Many people accept that dishonesty is ok as long as you are not found out [just look at cricket and rugby news for examples in the news today].

 

I for one do not wish to teach Ben that learning to lie in order to do well or be popular is a good social skill to learn.

Edited by Karen A

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baddad   

 

There are enough people who do things that are completely unacceptable and it is condoned.

 

Totally agree.

 

I don't think anyone is suggesting that honesty is anything other than a good trait. What is being suggested is that there needs to be some 'perspective' applied. If everyone was totally honest all of the time the world would be a complete mess, divorce rates would soar and society would break down. 'Diplomacy' isn't necessarily the same thing as 'dishonesty'. What is or isn't 'completely unacceptable' is very subjective, and the term 'completely unacceptable' a term that has been and will continue to be used as an excuse for all sorts of blanket prejudices. Taking something random, like, say, disability, as an example, there are those who would say it is completely unacceptable to abort a child because prenatal testing has indicated the child has down's syndrome. Others might hold completely polarised opinions - that it would be 'completely unacceptable' to bring a disabled child into the world. Hopefully, on a forum about disability, there are few here who would take the second view, but certainly most will be aware that such polarised views of the same subject exist, and that 'completely unacceptable' would be a justification voiced by both sides.

Anyhoo - still a little way 'off-topic' from the OP though relevant to subsequent posts, so I'll go full circle now to my original point: 'judgemental' is normal human behaviour - whether you are an autistic child being judgemental about the behaviour of adults at a love-box music festival or an NT adult drinking at that love-box festival taking umbrage on overhearing a child being judgmental about you! :lol: In either case, diplomacy and a clear explanation can help either party to see the other party's perspective as well as offering reassurance for both that their concerns are recognised and being taken into consideration.

 

L&P

 

BD :D

Edited by baddad

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Suze   

Sorry...........its a quick read/post............am I right in thinking yor friend made a drink for 6 kids and expected them to drink from 1 cup?............yeuch!..........your kidding I,d have a mega problem with it , as Karen said ....none of my kids would have been keen on drinking from a shared cup.

 

not very positive but I ditched a few close friends when my son was younger.......they sound just like your "friend" supportive but "not"...........best of luck suzex.

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JsMum   

Sorry...........its a quick read/post............am I right in thinking yor friend made a drink for 6 kids and expected them to drink from 1 cup?............yeuch!..........your kidding I,d have a mega problem with it , as Karen said ....none of my kids would have been keen on drinking from a shared cup.

 

not very positive but I ditched a few close friends when my son was younger.......they sound just like your "friend" supportive but "not"...........best of luck suzex.

 

 

I know I would have a problem as an adult sharing another persons cuppa tea from the same cup( ok mug!) but really, what was the big deal with your friend getting another cup for your son! she didnt need to make such a big issue out of it either, maybe next time your son should take his own cup!

 

As for explaining to member of public NAS do have cards with Aspergers Syndrome/Autism on them.

 

I got a plastic credit card type with Js needs on his, it is good as it gives a list of what other people can do to support him.

 

http://www.ucardit.co.uk/bibic.aspx

 

National Autistic Society may be able to help you further with assistance with shoppers/members of the public regaurding your sons ASD.

 

JsMumx

Edited by JsMum

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Paula   

I just think sod you but its not as politley put as that........i dont care what anyone thinks about my sons behaviour let them judge ,let them comment,it wont effect how i go about dealing with the situation....i dont even bother telling them hes got autism why should i whats it to do with them and lets face it most folks aint a clue what it is or means........

 

 

I wasnt always of this thinking but over the years ive toughened up to what others think.....

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Karen A   

I have found that deciding what to say to people and whether to say anything has become more complicated now that Ben is older.

I am aware that he now has some right to privacy regarding having AS.

Also even when great care has been taken to explain people do not always respond in a helpful way.

I would not want Ben to then have to face negative comments or gossip because I had talked about his diagnosis.

Karen.

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I've found that most people are more accepting and sympathetic of disability and bad behavior when the child is young, people seem to even take an interest in the child. As the child gets older i think the sympathy disappears and they will try and avoid contact with older children, teenagers and adults with disabilities.

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