Hello

[Nefertit1]

Hello everyone,

 

Reading some of your stories has given me such a sense of relief, we are not the only ones dealing with this.

The problems have not come from my son or his condition but our lack of understanding of it and the frustration at a diagnosis which took such a long time to come.

 

The diagnosis has brought with it a new set of problems: Do we tell people?

 

Over the years I have told people that my son was being assessed and that there was a likelihood of his being on the ASD spectrum. Rather than receiving responses of curiosity and empathy and understanding it seemed to make people quite angry.

Lots of "Oh, there is nothing wrong with him!" and "Don't be so silly". It seems that in others eyes we are nothing more than attention seekers.

 

Has anyone else experienced this?

 

Thanks

[westie]

Hi, I am sure that most people have on here received reactions like you describe "oh every child does that" "they all go through a biting stage, its normal" are some of the ones I have experienced. Even the people who are close dont always get it. My sister in law looked after my eldest for a time when he was about 18mths and they did not seem to understand how hard it could be till he stopped at their house when he was about 3 and he ran off because they wanted to dress him in his cousins clothes as he had nothing else to wear, and then he threw a car at the cousins head because he was not driving the car the right way/ saying the right things (he was VERY controlling in play situations). I think then she realised he was a bit different to your usual child. I am not saying this in a malicious way because unless you live with someone you cant always appreciate the difficulties they have.

What has helped me is going to support groups and making friends with people who also have children with ASD at school (there are quite a few surprisingly and we actually last year set up groups in the cluster of schools in our area to make links with other parents of children with ASD and this has been a success, and one has been set up in a nearby town as well and we can attend meetings at any school in either place!). They will be able to relate to the little things that can cause you/your child so much frustration but seem so insignificant to those who dont live with or care for someone with autism or Asperger Syndrome. You can also share information that is local and therefore more relevant to you (i.e. best or most understanding after school groups, nurseries, good schools and how they help kids with autism)

Take care X

[Nefertit1]

Thanks for your reply,

 

Your description of your son sounds very familiar.

I guess I just get so frustrated because I spend so much time trying to make sure that my son doesn't throw cars and control play situations with tantrums and in return we get no effort or understanding from other people.

 

I guess I shouldn't be so selfish as it is my son who is going through this and not me. But our children are an extension of ourselves and it is impossible not to take every injustice they receive as a personal blow.

 

When people dismiss my son's Aspergers they also dismiss all the effort and hardwork he puts into social situations.

 

We are beginning to get involved with support groups and getting advice like yours is a big help.

 

I am trying to be more positive.

 

x

[Chloes mum]

Hi

I have a 7 year old daughter who was diagnosed with AS and ADHD a few months ago. Whilst we were waiting for assessments we got lots of comments from people who seemed to think there was nothing wrong which I found really frustrating, as I felt they were blaming my parenting skills for her behaviour!!

however with hindsight I think people were just trying to be reassuring.

Since her diagnosis it is amazing how many people have come forward and said they thought she was on the spectrum!!!

 

I always tell people about the diagnosis as I think it gives an explanation for some of her strange behaviours / comments. Some people will always be negative about it and put it down to a 'naughty child' but thats their problem.

 

good luck

[Nefertit1]

Hi Chloesmum,

 

You are right, I think most of the time people were just trying to reassure me.

 

I think I will begin to start telling people but need to explain and discuss it further with my son first. We have ordered some books and have a little "Welcome to Aspergers" pack from CAMHS (It's not really called that but from the pack we have been given it does seem like we've joined a club rather than having just been given a diagnosis). Any tips on how to discuss this with my son would be gratefully received.

 

Thankyou so much

Edited December 5, 2010 by Nefertit1

[Chloes mum]

Hi

 

I think discussing it with your child is probably one of the hardest things. I guess a starting point would be to consider what he's aware of already?

With Chloe she has known for a long time that she is 'different' to the other kids at school - she has a 'helper' whereas the other kids don't, and she can't do a lot of what her peers can etc. I always try to explain it to her in a positive way. I tell her that being 'different' can be a good thing - that she is clever and funny - but that she might struggle with some things that the other kids find easy (such as sitting still, not shouting out, making friends etc)My main concern was that she might use her diagnosis as an excuse for her to behave badly, and she has tried this a couple of times!!! So I then had to explain that having AS and ADHD is NOT an excuse for bad behaviour.

 

We bought her a t shirt off the internet which shows a row of identical yellow ducks all looking in the same direction, and then next to them looking the other way is a beautiful rainbow coloured duck with the slogan above saying 'Autism: Being different can be a good thing' She loves it as she knows that the rainbow coloured duck is her!!

 

With regard to books, we bought 'My sister is different' from the NAS, mainly for Chloes older sister to try to explain things to her, but we also read it to Chloe and she seemed to be able to relate to the character in it (although it is a general autism book, not aspergers)

 

There are a few other kids at Chloes school with AS, ASD, ADHD etc so it helped Chloe to know that there were others like her and she wasn't completely on her own. We've also taken her on a few trips organised for kids with ASD/ADHD and that seemed to help a lot as she could be herself and the other parents were obviously really understanding of her behaviour.

Hope this helps a bit