when and how do or did you tell your person they have autism

[sesley]

I started this on another thread. My person is 10 with a mental age of about 7 to 8. He has shown no indication of self awareness and asking questions on why he finds situations difficult. I have been subtle,leaving stuff from the NAS about and books about people he knows with apsergers,and he watched a bit of the stagestruck thing with me,laughing at some of the antics and asking why Mollies mum was upset. I explained the people have autism. He says I don't have autism. I left it that,not to be something to be ashamed of or avoid,but because he is not really ready to except the consept,so all i think now is to show him things,like this program and one day he may start to see something of himself and ask,why he gets angry and acts like a bully. Today in church he got upset,because a girl would not play his games and so he was saying he was so alone. I just comforted him and try to explain,he can't expect other people to do what he wanted all the time and maybe to try their games with their rules .He does not ask why he is having these difficultiys,so i showing the Stagestruck program afterwards, i thought would be a begining to explain why. At the moment from his reaction he is denial,so i will just leave him with that,hopefully i can explain more as he gets older and can ask questions and accept the answers. Everyone is so different i know they can process at different levels . Wonder how you all managed to tell your people,when and when you felt them ready to take it all in.

Edited May 2, 2010 by sesley

[justine1]

My son is six and when we went for his first appt for assesment he already knew that he is "different" he said that the doctor will find out whats going on in his head.

So after the second appt when the paed said its Aspergers Sam was there and he heard,so when we got home I told him,but never went into to much details.He gets headaches when he gets stressed or confused so he says thats his aspergers hurting him.So he is sort of aware.

 

He did use it as an excuse for about three weeks after his dx but now he doesnt.He also decides who he wants to tell and who he doesnt.

I think he will want to learn more as he gets older so I will always be there when he needs the info.

[baddad]

I started this on another thread. My person is 10 with a mental age of about 7 to 8. He has shown no indication of self awareness and asking questions on why he finds situations difficult. I have been subtle,leaving stuff from the NAS about and books about people he knows with apsergers,and he watched a bit of the stagestruck thing with me,laughing at some of the antics and asking why Mollies mum was upset. I explained the people have autism. He says I don't have autism. I left it that,not to be something to be ashamed of or avoid,but because he is not really ready to except the consept,so all i think now is to show him things,like this program and one day he may start to see something of himself and ask,why he gets angry and acts like a bully. Today in church he got upset,because a girl would not play his games and so he was saying he was so alone. I just comforted him and try to explain,he can't expect other people to do what he wanted all the time and maybe to try their games with their rules .He does not ask why he is having these difficultiys,so i showing the Stagestruck program afterwards, i thought would be a begining to explain why. At the moment from his reaction he is denial,so i will just leave him with that,hopefully i can explain more as he gets older and can ask questions and accept the answers. Everyone is so different i know they can process at different levels . Wonder how you all managed to tell your people,when and when you felt them ready to take it all in.

 

 

Why do you feel he has no awareness, and that he's not ready to accept the concept? How can he accept a concept that has never been raised with him/explained to him? That's like saying, 'my son isn't ready to accept the concept of elephants' when he's never seen, heard of or otherwise been exposed to the concept of elephants! Show him an elephant and he'll say 'what's that?' in the same way he's asked 'why is mollies mum upset. Why do you think him being angry or bullying are signs of autism? I'm sure you feel he gets 'bullied' at school - are all the 'bullies' autistic? Do neurotypical people never get angry? He got upset in church today because a girl didn't want to play his games. That has nothing to do with autism, but everything to do with an unreasonable expectation that people should always play games with him on his terms. Some of my son's friends had/had similar unreasonable expectations, but none of them were autistic. My son, who is, did have those unreasonable expectations when he was very young but was taught that they were unreasonable. How can his current reaction be 'denial' if he has no awareness that he is autistic? That's a complete contradiction in terms. Why will it be easier to explain later on? Why will time make him more amenable to accepting answers? surely the longer he goes on not having any clues at all that he is autistic the more he will reject the idea when it's suddenly presented to him?

Sorry, I really do wonder who you're trying to 'protect' here and why you think you should need to. Sorry, but i just cannot for the life of me understand who/why anyone would meet with a consultant to get a child diagnosed and then not tell the child why they were in that room in the first place. It genuinely does baffle me. Autism isn't a dirty word, why treat it as one? Autism isn't a shameful secret, why treat it as one? Autism isn't a 'concept', why treat it as one. Your son is autistic, why avoid it?

 

L&P

 

BD

[chris54]

I told my son who is now 10 a few months after his diagnoses, a couple of years ago now.

But he never really reacted, just mater of fact to him.

As for all the goings on, appointments etc, just the same, just accept it is the way it is, I imagine he thinks it is the same for every one.

He does not consider he has any problems, it is every one else that is out of step with him.

[pearl]

Sesley, my lad was 10 when we told him - and like yours, less mature than his chronological age.

 

We regarded it as similar to sex education - best he should hear it from us than from someone else. Other parents knew about his dx & we found out the hard way that some had told their own children.

 

He'd been off school poorly & was talking about his SA. I asked him if he knew why he had an SA, & the conversation grew from there. It wasn't really planned - I just seized the moment.

 

As he'd been attending SPACE sessions with a group of children across the spectrum, we described it as like being on a beach - NT children were playing in the sand, autistic children were splashing in the water, some much deeper in than others. It doesn't bear much examination, but he 'got' the concept immediately - and to this day still uses it as a reference point.

[trekster]

i was told right away as i suspected something was different about me from an early age of about 7.

"what is asperger syndrome and how will it affect me?" from the NAS might be a start.

[pearl]

I've been thinking about this some more. Your lad said 'I don't have autism' & you mentioned later on he is in denial. That would indicate to me that he is indeed seeing some similarities in what he is seeing on TV & himself. Hindsight is a wonderful thing, but to me that would have been the ideal time to say gently, 'well, actually ....'

 

Good luck with it <'>

[Suze]

Being the first of my 3 kids stuff did,nt seem that out of the ordinary to me(very late develpomentaly obsession as soon as he could crawl).Stuff came up at nursery and staff mentioned stuff but I never really grasped what they were saying.However as soon as he started primary school things became more apparent.Stuff was put down to immaturity as he is a late august baby.However when he was 6 he began to get dx for various stuff, dyslexia, dyspraxia, auditory processing problems, sensory integration problems , then we hit a wall, school refusal, a breakdown and urgent refferal to camhs.He was dx with ASD soon after.He was pleased to know he was,nt thick ,stupid, a weirdo ,all the stuff kids at school had said to him.He was very open to his dx and has been since.He jokes about the resouce he attends at high school as being "area 66"...where all the "specials go"...alot of the other kids with autism in the resource are similar and very open about it and their differences.Humour has helped my son alot with his dx.Good luck with your son sesley <'> .

[sesley]

thanks for all your inputs. please understand that no way do i feel shame in fact i love him to bits ,just the way he is and yes the natural instincts of a mum is to protect from hurt and its impossible to do that always. In fact looking back at myself, i have probably the same sort of some of his autism, like him i found and still do social interaction difficult, i have had diffiucltys in making and keep friends,when i was his age i used to giggle my way out with nerves,to the point i got made fun of.I was mad on horses and everything to do with them and got made the fun of over that. I find empathy towards others grief hard also. Autism is a genetic thing and most likeley he has inherited it from me. I have been dropping hints at him i am aware he will be starting big school in 2 years and understand, he needs to know about himself and talk freely before then.Every person is different and people on the spectrum are as different as each other,so whats suits one may not necessarily suit another. I am just asking how you approached the subject and when you felt your person ready for the information you gave them?

Edited May 3, 2010 by sesley

[av16]

Hi, I have posted this before but my son was dx when he was 8 (in the Spring) we thought about how to tell him and planned to leave it a bit, with the idea we'd wait until he was settled in his next class and we were past the summer holidays. We had an appointment at the end of August and the first comments were ' how have you all been since A was diagnosed as autistic'. The shock on his little face . We soon told them he didn't know but of course the damage was done. We spent a long time with him as have other professionals to get him to come to terms with it. He now finally agrees he does have 'it' (He will be 13 this week)

 

Hope this sort of thing doesn't happen to anyone else.

[Sammysnake]

My daughter's 9 and I was planning to have a bit of a preparitory chat with her before we saw the Paediatrician two months ago (I was hoping for a clear diagnosis of AS but didn't want to pre-empt it incase I was wrong). I planned to chat to her a day or two before the appointment when over breakfast she suddenly asked me if her brain was 'special'. Other questions she'd been asking led me to believe she was noticing that something wasn't quite right so I did talk to her then, explained what I thought and that the paediatrician would help us to know how to support her better.

 

The paediatrician told her to her face that she has AS and explained in very clear terms what that meant and she was fine with that, asking him some very sensible questions. She was a bit freaked when he later mentioned 'Autistic' - I guess she had some preconceptions associated with that term but we are able to explain to her about the spectrum. She was on cloud nine after the diagnosis feeling that the nameless tension she had been feeling was now explained. She's happy to tell lots of people about it especially family as she feels it will help them to understand her. A book I highly recommend which gave her a voice to understand and explain much of herself was 'Can I tell you about Asperger's Syndrome? A Guide for Friends and Family' by Jude Welton and Jane Telford. It's written from the point of view of a child explaining to adults and siblings how some things feel different to him and what we can do to help.

 

 

[pyfan]

We have always been open with our son about his difficulties, he has always been aware of feeling different and used to think he was 'stupid' because of his difficulties. It has taken quite a long time to get a proper Dx but he knew the doctors were trying to help him and we went so often it seemed normal. I have health problems and have regular hospital appts so again it didn't seem unusual to him to have appts for himself. Once we started the process of transfer to High School we were completely open with him because he goes to a school with other pupils who have AS and similar. Since going there and being with other AS children he has completely accepted it. I have just asked him if he still feels 'stupid' and he replied 'no actually I think I am a genius'! On another note, we did have problems with our daughter who is 2 years younger. We should have explained things to her more carefully as during the long process of getting my son's place at school she did not understand why he had so much attention and started to act up, once we got a booklet from NAS and went over things with her she also accepted it. I think it is better to face up to these things and take it from there, as it will come out eventually anyway. Once my son knew what the problem was he stopped blaming himself and his self-esteem improved.