Parents of children with HFA - what are your views on telling them about their diagnosis?

[lizardqueen]

I'm struggling with the dilemma of whether to tell DS (6) about his diagnosis, which is high-functioning autism. He is in mainstream and coping well with the work but very socially isolated, although he seems happy. He doesn't know about his diagnosis.

I've read what Luke Jackson has to say on the subject in his brilliant book, but I'm still unsure.

Ds1 is 5.5yrs old and has HFA. I'd like him to know about his dx but I don't think he would understand it just yet. I do explain about the sensory stuff to him as it's a bit more straightforward IYSWIM. It's relatively easy to explain that not everyone's eyes/ears work the same way as his does but anything else is just a bit too abstract for him. It's equally hard explaining to ds1 about ds2's HFA. As far as ds1 is concerned his little brother is just being naughty.

I'd treat it like adoption- and tell the child so early they couldn't remember being told if possible. My friends dd with AS has known she is autistic from a young age (she's 7 now and has known for a few years) and is now uncannily good at dxing others. Not quite the same but ds2 (just 4) knows that ds1 is autistic and knows that some things are "difficult" for him.

The NAS does some great books designed for pre-schoolers up which can help.

i know a few children with ASD who know and they are relieved, but they are mostly kids with AS or HFA, my three don't know and i don't feel they need to know as far as they see it they are the same as everyone else, my 12 year old girls think all 12 year olds like cbeebies

Ds is seven and I have spoken to him about why he had the appointments with the doctors and occupational therapists (to help him do stuff that he needed a little help on) but we hadn't told him about the autism as dh was not keen to tell him yet. However, it was decided for us when dh took ds to see a paediatrician a couple of months ago who mentioned ds's autism a few times when talking to dh and ds so ds has heard it but hasn't asked about it....yet.

I would personally tread very carefully until ds is older, we told dd aged 7 she was AS because she kept asking why she couldn't be like the other children/why did change upset her and not her brother. We then had 18 months of very low self esteem/anger/god must hate me to have given me this etc./Refusal to have visual prompts or anything related to her disorder. Think she was going through a kind of grieving period. It also affected ds too who was only 4 at the time and often asked if he was going to get something too or me/dh. Our asd outreach recommend a child/sibling is too young to comprehend until at least 7. Also how you explain it is of paramount importance, we have done a self awareness programme with dd written by her support worker,she is hoping to have it published, but we have loads of good Nas books

Very hard decision, babe. I just don't know on this one. I've seen kids just crushed by knowing and convinced that they cannot succeed because they have an ungetoverable diagnosis. And I've also met those who seem to heave a Luke Jacksonish sigh of "ahh it all fits into place" relief. All of them have been older than your son (10ish at youngest) and I would tentatively say that 6 may be too young. I've recently tried to explain a bit about classic autism to my sons (nearly 7) as they have an severely autistic child at their school. They were asking questions about him and I tried my darndest to explain but tbh I just wasn't sure how much they understood. I felt quite nervous about talking to them as I am very keen that they have a positive attitude to disability in general and to this little boy in particular. Had I been talking about a diagnosis of one of theirs I think I would have been really devastated if they were that unable to grasp the finer points!

So I think that I would play for time in your situation, if at all possible, particularly if ds1 is happy and not asking questions. Maybe in a few more years you'll have more of a sense of whether and what he needs to know.

I have a son who is 5 and he has HFA. I have debated this as well. He is coping well academically at mainstream school but isn't forming relationships with his peers. I sense that he is very well aware that he is different but he doesn't understand why.

I have thought about explaining it to him but how do you explain autism to a child? I wouldn't know where to begin. I want him to understand why he feels different to others, but I want to make sure that he understands that he is a special wonderful person with lots of potential.

Thank you, everyone.

sis - gosh, it's a bit rough that it was taken out of your hands like that! I'd have been quite annoyed with the paediatrician, I think.

jimjams - I think we're already past the point of telling him so early that he won't remember being told - in fact, I think we were probably past that point by the time he got his diagnosis, at 3.5, as he does have an amazing memory.

monica2 - it is exactly a reaction like your dd's that I fear. He already compares himself unfavourably to his younger brother, who is a brilliant communicator and makes friends very easily. I'm afraid that he might kind of lose hope and stop trying.

scummy - that is really very very helpful - it's very interesting to get a bit of a wider perspective on this. I don't know anyone in RL who has an older HFA/Asperger's child, so I can't get this sort of insight directly.

Anoah - yes, quite, how would we explain it exactly? I'm not sure whether my DS1 perceives himself as different or not. I've tentatively asked him about it and he's indignantly refuted me, but his isolation seems to be growing more profound, not less so.

Think I need to stock up on some more books. Am going to get the Stanton one on living with HFA, I think, and have a look at the NAS catalogue.

Thanks again folks.
I think on balance, having read all your replies,

Yes, I'd have been really angry if ds had shown signs of being upset but as he seemed to take it in his stride and there was nothing we could do about it, I guess the only sensible option was to accept it.