I'm talking but nobody is listening

[berni]

When we first got the diagnosis that our son has AS we spent a long time pondering over who we should tell. We decided to tell our families and our close friends. When we explained to them that AS was the reason for his difficult behaviour, it seemed like we were talking but nobody was listening. Their advice was "just tell him he is not to do that" etc..

 

Denying previlages has no effect on him. Trying to remain calm is the only solution that works. But you know, that is very hard somethimes. We had professionals tell us what to do about the hitting and screaming etc., but they go home after work and that's that. But talk is cheap, we have to live it.

 

I know this sounds down. Don't get me wrong, we get great joy from our beautiful boy.

 

Let me know if anyone out there has had similar experiences.

 

Berni

[baddad]

Hi berni -

 

I'll be the first, but i suspect almost 100% of the people using this forum would tell you they've had similar experiences...

Family/friends often can't begin to grasp what AS is about - they've seen a few documentaries and 'rainman' and other than that it's a complete mystery... In some families 'denial' becomes the norm and can go on for YEARS...

Behavioural issues surrounding autism are equally difficult: Children can appear to understand HUGE amounts of information, but are actually not (not capable of) processing any of it - because their sphere of reference doesn't include the 'concepts' that would enable them to do so... often others outside the loop interpret this as ###### mindedness or (shamefully in this day and age) as indication of poor parenting...

 

No other advic i can give but stick to your guns and try to educate those who matter gently and consistently... For those who 'don't' matter: _ **** 'em!!!

 

L&P

BD

[smallworld]

Yep, I agree,

the professionals go home at the end of the day and can switch off !

when I'm being given advice by these people I always have to think, 'yes ,great idea' ( in a calm, ideal world ) but can I carry this out day after day.....?'

As for friends and family, slowly slowly approach, or take off on holiday (if you dare) and leave em to it !

 

wac

sorry, will try to come back to this in a better frame of mind.

[justamom]

Baddad said it all - but yes on the outside our kids look like they are naughty could do with more discipline but if that were a cure we would all not be on this forum. Talking calmly in our house is the only thing that works but God its hard when you are furious with them(espeically when he's hitting his sister).

 

You are not alone in this we have all come across people that just don't get it.

 

good luck

[smiley]

Hi Berni,

 

Been there, far too many times!

 

What worked for my family was to print off some information about AS and leave it with them. It wasn't immediate - but eventually they began to question me about AS.

 

Failing that - staple them to a chair and make them read Tony Atwoods book!

[curra]

Berni,

 

I agree with what the others have already said and would just add that with friends and relatives it could be useful giving them websites and written information about AS. If they are like my relatives they will come back to you to tell YOU what AS is all about. If the main point is to make them understand your son's behaviour, perhaps that is not a very big price to pay. Yes, professionals talk and then leave and it's up to us parents to educate our children in the way we think is best. If you think that they have made a good point with something , perhaps you could try it or adapt it to the way you think it might work better. Staying calm is a very good strategy which I try to use mostly all the time, as long as there's no danger to anybody, including pets, or even property. When my son "crosses the line", ie he hits, hurts or destroys, he knows that two things will happen: he will have to calm down somewhow and he will be punished (after warnings of course). Even in the worst scenarios, if you are calm though firm it's much better because confrontation makes the situation worse with them. My son imitates behaviours a lot, so when if I lose it, so does he. With my son only restricting his use of the computer is at this moment the only thing that works. Money and bribes have no effect on him and things like "isolating" him in a room, like they show in TV programmes like "Little Angels" are a complete no-no because he gets panicky and enraged.

Hope this helps a bit

<'> Curra

[Flora]

Berni,...been there and got the t-shirt etc.

 

In some cases it does get better, but there are still many members of my family who I've given up on trying to explain. There comes a point, and you'll know when that is, when you have just got to let it go. People who don't want to hear it won't hear it, those that do will. If that makes sense

 

Lauren <'>

[melly]

Hi Berni,

 

Sometimes I am not sure which was worse - I have a brother in law who would, every time we saw him told us that our son was fine, and that he would grow out of it, so and so was like that as a child and now look etc etc etc. We were fed up with trying to explain and point things out.

 

Then suddenly said bro in law stopped questioning. I guess he finnally saw what we did! But that also meant he saw our little un as different.

 

You'll get there, at least with some of them

 

Good luck

[jen]

Telling relatives that your child has asd is like a bereavement some will denie it some will be angry and then eventually they will accept it.

To us as parents ASD is a learning curve and we see reactions when things go right and wrong. Give your family time and give them written information of what asd is and how it affects your child.

 

Jen

[Guest hallyscomet]

Hi Bernie,

 

<'>

I agree with all the above and I will also add we have to put up with the Media and the likes of Dr Phil McGraw in the US getting the facts about ASD wrong.

 

My argument just today I posted a transcript from a show from Dr Phil, (look on General Discussion) he hasn't done us any favours.

 

I feel it would be good to get something in writing in reponse to his show, haven't seen it myself, but have a read, this is exactly what you are saying.

 

I blame the media- ignorant.

 

Hailey

[niki]

YEP!

[Bullet]

My mum declared that Ds1 was fine after seeing him for a day for the first time in a year. During this visit he:

 

didn't respond to any questions, either by expressions or gestures or talking

Had a constant stream of echolalia derived from sentences he's heard people saying earlier on and tv programmes and stories, but absolutely no spontaneous words. I had to explain what delayed echolalia was to my parents.

Studied his toys and other objects with an intensity that would have done a scientist proud but did not play with them.

Responded to only the simplest of commands, that he's heard countless times, accompanied with gestures.

[hayz]

My mum declared that Ds1 was fine after seeing him for a day for the first time in a year. During this visit he:

 

didn't respond to any questions, either by expressions or gestures or talking

Had a constant stream of echolalia derived from sentences he's heard people saying earlier on and tv programmes and stories, but absolutely no spontaneous words. I had to explain what delayed echolalia was to my parents.

Studied his toys and other objects with an intensity that would have done a scientist proud but did not play with them.

Responded to only the simplest of commands, that he's heard countless times, accompanied with gestures.

I know exactly what u mean ,people just dont get it do they,and my family dont support my sons ds at all hayz