What do you tell other people?

[LizK]

I've always struggled with what to tell other people about Adam's condition. Close friends and family have been aware for as long as we've had concerns so have no problems telling them but am thinking more about friends and family we see less often, people you bump into in the street or at swimming or music group or strangers even who are aware your child isn't acting 'normally' and give 'looks' or make comments.

 

I've always felt torn between want to tell people that Adam has ASD to explain why he's behaving in a certain way and not that he's simply being naughty. On the other hand part of me feels uncomfortable divulging personal information to people I don't know so well or to total strangers. People can have such negative preconceptions about autism and I don't want him labelled and want people to see him as Adam not just the autistic child. Up to now I've sort of fudged it, mumbling about speech delay and social problems and have given information depending upon the circumstances and the intentions of the person. I think some people are genuinely concerned or curious, others just nosey. Some stupid bat a few months made a comment very loudly in my direction about 'needing supernanny' and I nearly turned round and siad to her 'he's autistic, you intolerant cow'. Maybe I should have!

 

I need to sort this out in my head as it's likely to become more of an issue I think as he gets older and differences between him and other children become more apparent. Yesterday even nursery SENCO asked us what they wanted us to tell parents if they asked why Adam was getting perceived 'preferential' treatment and whether we wanted them to explain what was going on or tell them to mind their own business! It's not been an issue at nursery but they were just premping this in case it ever arose. It's something though that had never crossed my mind until they mentioned it

 

Just wondering how others dealt with this issue. Is openness the best policy?

 

Thanks

 

Liz x

[mum22boys]

Hi Liz,

 

I too have been facing this one lately. I thought hard about telling a mum at the school because M had been invited round and he shouted no at her that he didn't want to go. When i asked him later he said he had already been and couldn't see the point in going again. I was faced with telling her the truth or mumbling my way out of it until the next occassion. I also know I need to do something because he will not acknowledge the kids out of school and i am desperately trying to keep the few friends he has. I decided to tell this mum and her response was great. She said she would do anything to help him and invited us both round.

I too am not sure what to do about the other mums. These are the ones i don't speak to but they see the way he ignores their children when they call to him and I still am in two minds as to what to do. Do I feel as though i am betraying M and tell them or say nothing and the situation may get worse when the kids stop speaking to him altogether.

I am finding that if he has a tantrum out in public particually if in a shop i tell the shop assistants and they are fine with us staying there even if he hurls abuse at the customers. Sometimes honesty is the best policy. I have applied for a card which will state M has a special need so if in future i am faced with the glaring public whilst out and in the middle of tantrum I will show them it.

I too have made every excuse possible for the way M is. When he refuses to acknowledge people I would say 'Oh he's tired....' I've realised though that I can't make excuses forever and am preparing myself for the fact that i have to inform people.

M went to a party the other day. He wasn't keen on going. The mum is a good friend of mine and knows the situation but it was still hard watching other mums look at him whilst their kids joined in and m looked through a book on the prehistoric world!! (he's 5)

 

I know this is all no use to you but i do understand how hard the decision is as i am still going through it too.

 

mum22boys <'> <'> <'>

[georgie]

Hi

 

I know exactly how you both feel - my 5 year old son recently started school and I felt like I suddenly had all the other parents looking at me and my son and wondering why he has a support assistant or why he pretends to be a dog when the other children say hello to him.

 

When he was first diagnosed, I suppose it took me a long time to come to terms with it myself, and I didn't feel like I could share it with others. I don't like to admit it, but I suppose I was a little embarassed and just wanted my child to be like others. But now, over a year later, I really don't have a problem with telling people he is autistic, as I accept now that is just him and who he is. Increased awareness and understanding from others around him, can only help.

 

If it is a stranger, or a confrontational situation, I do use the NAS cards explaining 'this young person has autism'. But with people I know, or other parents at school, or in shops, I do explain.

 

I always remember seeing Luke Jackson stand up and speak, and say, 'its cool to be different'. I'm proud of my son and who he is and now don't have a problem with explaining why he is different.

 

Georgie

x

[Guest flutter]

well we are at new school

and have taken bull by horns and if she gets invited round i tell them all about her asd,

so far it has worked, and not affected stuffs

good luck, i think go with instincs

tc

C x

[phasmid]

You can get some business size cards from the NAS that state something along the lines of:

 

This child has Aspergers...

 

 

a brief explanation and a phone number. Not perfect but it puts the onus on the 'starer' as it were.

 

As for those closer to home, tell them if they ask (why hide it?) or comment.

[jayjay]

Hi everyone , my son was diagnosed with ASD a month ago. At the school i kind of mention to a few mums that he was been assessed and since the diagnosis they have come up to me and asked how it went and i told them the truth and it has worked out brilliant for us, as they are understanding of him and tend to try to engage him in conversation must admit though that i am in a village school of only 50 kids so that most probably has a big advantage for us

jayne xx

[baileyj]

We to just tell people straight out, Max is autistic. In school all the parents are nice, some ask how he is, some treat him normally and don't turn a hair when he completely ignores them, and then theres some who don't really speak to us cus they don't know what to say.

 

It used to bother me, but ive got used to it now, and I am very open about Max's difficulties I find it the best way.

 

When with strangers and he's having one, and they stare, i just concentrate on calming Max down and making him happy, I take no notice of staring people.

 

Jo

[Emum]

I try to be open with people I know and introduce into the conversation at an appropriate point that E has autism, ideally when she is not actually around. I don't usually bother with strangers unless they turn on her. I have been known to say to old bags who come up to her and say "What a naughty girl" "No she's not naughty, she is autistic and she hasn't understood what I've just asked her to do" I've had to do this three times, and on each occasion the person has apologised and completely changed their attitude to her.

 

My husband on the other hand doesn't tell anyone and if anyone queries why she isn't responding to them, says she is just shy!

[ceecee]

When my daughter was autistic people would cross the street to avoid us.the same people that had chatted to me perfectly fine the week before.I guess you find out who your friends are

 

I tried to ignore the stares but it really gets to you in the end.So much so i would hury everywhere at break neck speed trying to get back in doors again before she started doing something odd.

 

There were a couple of occasions when I said something usually when horrible little old ladies passed comment.

 

She used to pick rubbish up off the floor and it was really hard to stop her and this lady was tutting and moaning and i just let rip.

 

Another time she was sitting in her buggy when another one of these lovely little old ladies said she should be walking a girl of her age.

 

I just said through gritted teeth actually she is ill and keeps falling over.

 

So I appreciate how difficult it is to say to people and what to say and how to say it without losing your temper. : <'> <'> <'>

[madme]

I vary it. My son has aspergers and so people are rarely accepting in my opinion.I had a go at a chuch goer recently who accused my son of staring at her. She didnt apologise. She obviously wasnt a v good christian. I can recall being in a strange town with my son and he was coping well. Lady in front however was having problems and I recogniosed the problem. She apologised for her child and I said no worries mine can be worse he has aspergers. She looked so pleased and we had a long chat. He had a simillar dx. I do find that I am so much more understandung these days when I go to shops and supermarkets and see the way children behave. Sometimes my son will turn and say of a smaller child who is having difficulties mum do you think that child is autistic ? I spoke to someone recently about a possible programme about mums of adhd asd kids. Hopefully it will debunk the supernanny rubbish.

[phasmid]

Madme, that bit about the supermarket struck a cord! Mrs P took the middle and youngest to the local swimming pool earlier this year, leaving me to get on with what I should be doing right now (essay's!). Youngest got playing with a boy about his age. His mum was watching him like a hawk (her's, not ours that is). She kinda of drifted over to Mrs P and got talking. Mrs P had already got this sussed out and, I suspect so had our youngest, she said how lovely it was to see him actually playing with another child becuase...well you can guess the rest.

 

It turned out she lived 20 miles away but had to come out of her town because people who knew her son taunted him and made his life a misery. She was at an absolute low. Why she picked that day at that time to be there is anyone's guess. She and Mrs P got talking and talking. She just needed someone to let off steam to who understood. When I picked them up Mrs P hoped she had helped by listening. She had also written down some places to contact and websites to visit.

 

Apparently her face when Mrs P said "I really do understand because my eldest has AS." was one of shock and relief rolled into one. Another good reason, says I, for being open about things. You never ever know when you might meet someone who can learn from your experience. I hope this lady, whoever she was, followed up on the information Mrs P gave her and is happier now then when they met. I doubt we will ever know.

[OPooh]

TBH my little boy can act so "normally" which makes things hard because it really does seem more like he's playing up.

 

There was a little boy in the doctors who started lying on the floor and pretending to be a cat. He looked so cute and I immediately assumed he had some sort of asd. I must have been grinning widely at him because he looked so full of love. Then his mom explained he has asd.

 

She seemed so relieved when I said my son (who wasn't with me) was being assessed for aspergers and that my brother has it. But I felt that this poor woman must have had such a difficult time if she felt the need to explain to me that he did.