Ds1 being told off by general public. Wwyd?

[saintlydamemrsturnip]

Just curious on your thoughts. Ds1 is ten years old, severely autistic, non-verbal with severe learning disabilities. But (and I think this is perhaps key) he looks entirely 'normal'.

When we go out be us very closely supervised. He us either on a harness or someone is holding onto an arm the entire time.

In the last few months he has been told off three times for doing next to nothing (this has never really happened before so I think it's age related -ie general public hates 10 year old boys in general). The first two times he stood next to a person in a queue rather than behind them. No pushing - just standing. I usually leave him there and
stand behind him holding onto him. If I pulled him behind there would be a struggle as he likes to stand where he can see - then he'll wait nicely. It is fairly obvious from my language that there is something going on. The third time was yesterday - I took him into a newsagents I go in four or five times a week. He made a move to go into the backroom - I grabbed him before he'd managed to get even behind the counter. Newsagent got really stroppy. I explained. Newsagent carried on being really stroppy.

So wwyd? Obviously newsagent has lost my custom. People talk about handing out cards but I alwayshave to have at least one hand on ds1 which doesn't leave much room for handing out cards. IME when you do explain (as I tried to yesterday) the person just carries on being stroppy.

I suspect this may happen more as we head towards the teen years. Is there a way of making it easier or do I just need to grow a thicker skin and tell the person to fuck off in my head ( don't worry I won't say it).

i hate this too and my ds is only 4 so more of it to come. i hand out those cards sometimes and although its not easy holding him/pushing his buggy too i am really quite sad and have on in my jacket pocket whenever i go out or a pocket on whatever im wearing on its own so maybe jeans back pocket type thing, then its easy to get it out and know youre not giving them your bank card or something by mistake and can be easily got out without too much effort whilst holding a struggler!! to be honest we rarely take ds out because of the way he is and the reactions we get which is awful i know but i just cant take it. so ill be watching this thread to see if anything gives me more confidence to go out with him more!

I think in a way it's that which makes me sad. Ds1 used to be awful when we went out - he couldn't wait at all. Not even for a few seconds. Now he'll wait in a 5 person queue which was unthinkable a few years ago. In fact he still can be bloody awful ( I was punched in the face three times last time I took him out and we had loads of screaming and rolling about on the ground) but he seems to get told off when he's actually doing really well. So I feel sorry for him too. People gawp but I think are too scared to approach when he's kicking off.

Perhaps I need to design a card saying 'do you not understand how well he is doing? Stop sucking lemons and smile at him.' I'm still not sure I could do cards. I think the newsagent yesterday could have turned nasty if I'd tried to give a card and he's so strong now I would worry about removing an arm whilst trying to hold him iyswim.

ime I have developed a very thick skin, slightly different for us as ds, asd, sld etc is now a full time wheelchair user when we are out, due to his extreme behavioural problems.
I think you should be proud of yourself that you are allowing him a chance to do normal everyday things.
I am very very blunt with people, if they are trying to help which does happen then great, if they are making stupid comments I am not abusive to them but tell them exactly what I think of their opinions. I find this empowers me and keeps us from being recluses!
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Thanks hairy. I have developed a very thick skin for when ds1 is kicking off. Couldn't care less then. I suppose the difference here is that he is being told off when he is being very good (for him) and I'm not used to dealing with that. I think I might try being blunt but nice how about something like 'I'm sorry if he is bothering you but he has severe autism and severe learning disabilities and is doing incredibly well" Too long?? I'm also a bit wary about saying too much in front of ds1 as he knows he has autism and sometimes gets upset by it - he understands more than I sometimes remember iyswim. And I am worried someone might say something awful back - and then how much of that would he understand (hard to guage...)

perhaps I do need a card to hand out saying something like that.

mmm difficult especially if your ds has some awareness.
I think the nas do cards that you can hand out, perhaps that may be the answer.
Good luck

The NAS do, as do treating autism, but I might make my own talking about the learning disability as well. Donna Williams years ago shared some wording that might be worth borrowing for cards as well.

I'm just not sure about handing them out. I wonder if I would feel better getting stroppy. I suppose I don't think anything is going to educate someone (ime they either get it or they don't) but I don't want to feel bad about it. On the way to the newsagents yesterday ds1 stunned me by saying 'nee dahn' (tree gone) (2 words, not clear, but understandable to me- and wow 2 words) but I lost all that good feeling from that because of the sodding newsagent.

2 words !

I get loads of grief when out with J as, like your ds, he doesn't look disabled. I get grief about the blue badge, about the whirling and singing, about the taking off of clothes, about the lining up things on shelves...it did get to the stage where I wouldn't take him to any shop at all or even take him out on my own. Now I will take him places alone for short periods, but I won't do the cards thing either - have just got to the stage of telling the person fuck off in my head and saying 'he's autistic' if challenged or, if they say anything to him or anything he can hear, will be a bit more defensive.

Like the woman who made a comment in his hearing about 'parents need to look at how many E numbers they're putting into their kids' . I was on my own and so didn't want to say anything to her in front of J. She was in the queue behind me; I got J into his carseat and stood outside the car until she came out.

I called her over and asked why she thought it was OK to comment on other people's children without knowing anything about them. I explained that he has ADHD and autism and cannot help a lot of his behaviour - he wasn't even harming anyone (just whirling and singing loudly) and yet she had harmed me and possibly him if he'd been able to understand what E-numbers were by being rude. She was and apologised.

The man who screamed at me about the blue badge got a much ruder response though because he was upsetting J by following us and shouting abuse. Think my response was something like, 'he's autistic, just piss off and stop harassing us please' which is not something I'm proud of, but 2 onlookers came up afterwards and said 'good for you'.

I guess the best response is short and factual. I ignore the gawpers but those who feel they should comment are fair game for a response that maybe makes them think a little before they speak next time - I can't understand why people would be stroppy when told a child can't help what they're doing as they're disabled .

Like your ds, nobody comes near in a screaming, violent meltdown as they can see there's an issue!

I don't think there's a solution and it's hard to grow a thicker skin, but I hope that most people won't give our boys reactions like this as public awareness of autism grows and I have got better about taking J out as I don't see why he should be kept away from public eyes when 90% of the time now, the behaviour isn't dangerous or harmful, just odd.

J's psych said, when I asked how much we should be trying to get him to stop behaviour that wasn't dangerous but unusual and attention-grabbing from members of the public, that in the grand scheme of things, a child whirling and singing harms nobody! Especially when you think of all the awful things in the world that people do to each other! And I'm trying to have that attitude now.

Pissed off on your behalf that people are making things harder but the 2 words thing is fantastic!

Could you, when you hear the inappropriate remark, praise your DS1 in a very specific way - ie in such a way that he's still got your attention but the interfering old biddy is in no doubt that you consider she has misjudged his behaviour?

eg lady "grr, queueing, mind your manners, etc"
you: "that's it DS2, you're waiting really well, you're getting really good at waiting you turn".
etc.

Then he gets to keep your attention but the third party hopefully ends up squirming, all without you actually picking a fight.

It sounds like ds1 good behaviour is getting the attention because he IS doing so well and his disability is not obvious. I think your wording is lovely might use it myself.I do agree ( ds is 10 too) that sometimes it is ds thoughtful or better behaviour that causes comment - because it is so similar to others. I tend to use more coded ways of warning people - such as ds ( tall as me ) cannot read yet ( that sign means no entry - see the n-o) It is almost meaningless to ds but conveys immediatly a warning to others about to shout. However I don't think this will work much longer!! People are more understanding of little children. I wonder if it is because teenage boys in particular need society as a whole to help them mature safely into adults so people are more inclined to interfere and expect (too) much.
I am ashamed to say I jumped a mile when a young man I have met once jumped at me from behind for a friendly (bear)hug in exactly the way ds does sometimes. For a second I thought it was my ds (who was not with me- I was packing my shopping so distracted and had not seen the young man) so treated the back crushing embrace (gently please!)the same way I would for ds before I realised it could not be my son! We had a short greetings exchange (amasing memory!), but the carer came to apologise - handing me a card. I felt like I had been told off for jumping (and yet I am used to it!). Actually it was a lovely hug!! I am uncertain about cards too and have not yet used them.

Perhaps you could say something like "Actually, with his disability, he's doing extremely well today!" And then give a small smile and a curt, dismissive nod.

used to happen quite frequently with my son on one occasion was waiting for my sons meds in boots and most of the staff knew him and would let him help fill the fridge and snack baskets, on this occasion though it was a new young member of staff and told me to keep my 'little shit under control' a friend who just happened to be in there helped me out as I got very upset with the comments he was about 10 at the time.on another occasion he was sitting nice in the chair in the post office waiting when an old lady asked him to get up as he would be like her someday I explained that he was disabled and she apologised but I still told him to let her sit down.

you can get realy great t shirts saying things like i am autistic please be patient with me and lots of other phrases. Saying that i dont have any for my ds 16. When people tut or stare etc i just stare back at them and if anyone made a comment i really do think i would get very angry. He has just started a new school same teachers class friends etc and he is doing great but is very into tidying up and putting things in order in shops and at home probably just his mind trying to cope with everything and at 6 foot he is very hard to stop so we do get judgy stares a lot

I don't think most people do the rolly eyes any more about autism, but they do look a bit because J doesn't look anything like Rainman and that's most people's best idea of autism. Was mine, too, before J.

I only have to be in a shop 5 mins for everyone to know ds's name. He can't queue, I don't think he can physically keep still as he always has to be moving, and he's too strong for me to hold on to (10 in may). So he wanders away a little bit and then I have to call him back or he 'forgets' and just carries on going. Then he wanders away again... I can tell people are wondering what is going on but luckily not many of them feel the need to comment. Usually if they do, I tell them he is autistic which satisfies most people but you can tell some think "oh she's just too soft with him, I'd soon sort him out"! So I'm now wondering if it will be better to just say "he's disabled" and let them draw their own conclusions?
Saintly, we had a pub until ds was about 5 and we had to go behind the bar to get to the accommodation. Ds only had to see a shop counter or similar and he was behind there like a shot, which was quite embarrassing, but people were more amused when he was little. Now he's nearly 10 I still have to watch him as they are not quite so amused! They have never actually been rude though, just given me a rather weak smile. I would be very upset if someone was nasty even after I'd explained.
My hairdresser is lovely. Ds always makes a bee-line for her back room but she just makes sure the back door is locked and lets him get on with it. Needless to say she will have our custom for life!

I must admit that I find it harder now. DS is 10 but is 5ft 6in and looks so much older. He doesn't stand out until he does IYSWIM. I tend to do what backtolingle says and praise him really loudly for appropriate behaviour and then when the 'teller off' glares at me smile widely and say something like 'oh he used to be terrible when he was younger' and re praise DS using very obvious Makaton. It saves my sanity rather than make me sweary (which I have also done ) and has usually the desired effect. If not then I say LOUDLY to DS 'never mind son some people don't understand disability and those are the people WE fell sorry for' - don't usually have to say that though.....

its not our kids that have the real problem though is it it's society I have done the frog marching out of shops and have had stares, the tuts and comments about being a bad mother can't do that now as he's 15 and 5'9" I do use the positive reinforcement with him still feel a bit daft at times but it works most of the time now.

I don't have any advice but wanted to say a big "WOW!" at your ds1 being able to wait in queues now. That's fantastic progress!

I'd be tempted to use a little non-verbal communication with the people telling him off - the sort involving one or two fingers. Grrr!

Lots of interesting comments to think about - thank you. My approach has always been to make the disability obvious through my speech and things like waving a pecs book around. It just doesn't seem to work now. Maybe you're only allowed to be disabled when you're little

I quite like the wedgiemum approach of loud sarcasm to be overheard. I've used that when I've been out with a helper. Last time this sort of thing happened I was with his TA and she said 'oh here we go. First one of the day' and I replied you would think it was fairly obvious that this isn't a normal situation wouldn't you- I have no idea why people are so ignorant they don't notice'. It's probably a bit passive agressive but I feel more comfortable doing that than tackling someone head on. I do wonder if I took the plunge and got stroppy whether it would get easier second time round (like standing up to professionals - have no problem doing that now).

A good point. There are lovely people. 2 minutes after one idiot did a loud 'excuse me' followed by tutting and staring at him because he was standing in slightly the wrong place a woman came over and asked if he was autistic because 'I recognized the little sounds he's making'. And I recently had a student who had been on work experience at his school come and visit and spend about 2 hours telling me how much she liked him and how he made her laugh because he was so cheeky.

I think I am over effected by these people who probably will never ever get it.

Can echo having the experience of people looking at me with the "why can't you handle your child" expression. grrrr

We had one particularly bad day at the airport when flight was delayed. Ds2 was 2.4 and kept amused with the various toys, snacks, etc. that I had brought. Ds1 (5 at the time) on the other hand, was inconsolable. I never had to confront anyone but did talk to him in simple, soothing terms that I think helped the people at the gate understand there were underlying issues. One of the attendants even printed off a word puzzle sheet for him when she saw he was not satisfied with anything I had.