How do you get it through to your friends?

[macwoozy]

If you didn't know any better, then watching my ds with several of my friends and a couple of their children around Xmas time, for an hour or so, you might think he looks and acts typically normal for a child of his age. There was no stress for him, everything to the last detail was explained, the childrens game was planned and ruled by ds so he couldn't have been happier. Everything was as he expected. It was a lovely time for me, I felt proud of my ds.

But why did my closest friends who rarely see my ds feel the need to stress to me how 'normal' my ds is. This is a child who will always need 1:1 at school, can't join in with the typical clubs like cubs and karate etc, is clueless on how to behave or unerstand what the hell is going on at a party, becomes so aggressive when all this overwhelms him.

Next time I go out with mates I have this urge to bring out with me all the latest reports of him but I wouldn't want to bore them with it. Do you ever find it difficult to get it through to your friends how bloody difficult it can be having a child with ASD.

Evil bastards aren't they - the compulsions.

yes- an older neighbour stopped me a while back to ask whether ds1 had OCD as well as autism- she then told me how she used to suffer really bad OCD for a number of years- and said she recognised it easily in ds1. Apparently they gave her electro convulsive therapy. She said it worked for a while but they came back.

It's interesting as I often wish in a way that dd's disability was more visable.
People just don't get it at all. That someone as capable as my dd can have special needs. Then you get friends like my one that came round tonight and said that dd was mad
Yes she is very eccentric but we love her that way.
I think I am developing and much thicker skin and f* anyone who doesn't want to understand. I will not justify my dd to people any longer!

Other people have no idea. I have it with my in laws - for example they always say DS (who eats a limited range of foods) likes the food at their house i.e. implying we just don't provide nice food. Had to laugh the other day cos MIL made a xmas cake without the marzipan specially for DS as he told her he doesn't like marzipan, but when they brought it round he told them he doesn't like the fruit cake part either - and DD1 told them she likes the cake WITH the marzipan .... couldn't help but enjoy it rather

I think with ASD kids, we want support and recognition for the difficult job from people, but they don't realise and try to reassure us that everything is ok. which is not helpful.

My sister has always said she wished that she had a physical disabilty as opposed to a mental illness. She said she'd much rtaher be in a wheelchair so people could instantly see what was wrong with her. She hates being as ill as she is and being among people who try and treat her like everyone else and ask her what she's up to and is she working etc.

It's weird and just as JimJams says - I have the total opposite with my DD and have to protect her from people who judge her becasue of her appearance. I guess it's better to be able to see the disability though, I'd never really thought about it before. Must be so hard for you when people can't understand why your children are doing x or not doing y becasue they look 'normal'

I don't know that its better- just different. I mean I know some friends with children with DS and CP have had the most awful, vile things said to them when they've been out and about. Really horrible things. In ds1's case we just get the tuts and the flinches (when he screams ) and the gawps at the behaviour. I don't say much because I'm too involved in dealing with it. Must make up the cards Donna Williams gave me for gawpers.

To say that it was better would be a bit like saying that its easier to have your child in a wheelchair because they won't run off so you can take them to places (and I have heard people say that before). I really think that's missing the point. Yes ds1's physical abilities make it very hard to take him anywhere (imagine trying to take him to the cinema for example with all those compulsions- he couldn't sit on his seat- he'd be up and down looking at the stairs, wanting to sniff the screen, checking out the entrance and exit doors)- if he was in a wheelchair yep he couldn't act out his compulsions so he could actually access the cinema (and would probably enjoy it) but it would be a high price to pay for being able to see a film!