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HFA diagnosis, aged 6.5. tell him or not?(52 Posts)
I think this has been done before, but just want some reassurance that we are doing the right thing. New diagnosis, ds in MS school. We need to tell him he's autistic right? Using the word autistic instead of hedging about it with phrases like "special" and "different". And his peers and siblings should be told too? Just thinking of potential for bullying, exclusion, self esteem etc and I think it's better if it's all positive and in the open....but I have doubts too....once it's out there there's no going back, and I'd hate it to emphasise his differences in a way that makes him a target. He's the odd naughty kid at the moment though (to his peers and siblings), surely its better to tell them all and be positive? School say it's up to us, they are very goid about being inclusive and celebrating differences and making allowances and helping the kids understand without actually using th "label". Would it be better to just continue like this? Confused!
Please tell him. you can frame it like a super power with all the stuff he's able to do.
You need to tell him, I think.
Some friends of mine recently did this with their DS who is around the same age as yours. I think they used a technique recommended by their consultant. They made up a scrapbook consisting mainly pictures of people they know but also some strangers and then used that to talk about how people are all different but everyone is special.
So they had a picture of me and then talked about how Magic blue eyes and likes Lego, while X likes running but hates swimming, Z has brown eyes and loves swimming etc. Then on the last page they had a picture of him and they talked about all the things that made him special and different - including his autism.
It worked out really well for them. He still has the scrapbook and likes to refer to it by himself.
I told ds straight away after diagnosis. Started with the whole everyone is different chats well before diagnosis, then explained how he had a different sort of brain to most people (he'd already expressed feeling like an alien) and that it had a name. Over the years we've talked more and more about autism and disability, strengths and challenges. It's been very positive.
I do think you have to be careful not to go overboard if you choose to big up the good stuff/special this and super that, I'm not sure it's very helpful in the longer term. He is the way he is, he will find some things harder than others and some things easier.
He's been going to these kind of appointments since he was about 14 months and he's never really questioned any of them. He has had an SNA with him at school and he's never asked why. He was assessed by a psychologist who came to see him in his school setting and was able to make diagnosis based on his notes, parental interview and observations of him at school. He just doesn't question himself really. He says he needs someone with him to help him but he accepts that without asking why.
He is a bright kid, but by no means a savant in any area, so I guess I wouldn't be emphasizing his abilities any more tjan I would those of my NT kids.
I like the scrapbook idea.
We are thinking about this too but will probably wait until there is some sort of realisation on his part or difficulty where finding out would help. i saw this on a website and thought it sounded really nice and much more eloquent than anything I could think of! It was for Aspergers:
*you are so many wonderful things. These things are who you are. But you know how you have had struggles at school and getting in trouble and making friends? That is because you have something called autism. Autism makes it difficult for your brain to understand some things, and it is why you get frustrated sometimes and things bother you so easily. That is autism. I will never allow you to use autism as an excuse to fail. I will never allow you to use autism as an excuse for bad behavior. I will also remind you that you have Asperger’s but you get to decide if Asperger’s has you. Asperger’s is a condition you have. It does not have to define who you are because you are so many other wonderful things. Asperger’s causes some things to be hard but it has some gifts too like your memory for details, your ability to solve maths, and your wonderful vocabulary.
Do not be afraid of labels. Diagnostic labels are helpful to help you help your child get the services they need. Remind them of who they are, not what they have*
I think it's better to explain autism before a child falls apart.
I also don't like that piece of writing at all tartan.
Autism absolutely does define us autistic people, and isn't a 'thing we have', it is a fundamental part of our being.
I also think autism is very often a reason or an explanation (not an excuse) for 'bad behaviour' (which is almost always a stress response to unmet needs). It is also a reason for why we often 'fail', or struggle enormously with, things that NT people take in their stride.
Ok. I think I really do want to tell him, maybe in a casual just dropping the word into occasional chats kind of way. Im still not sure what his teacher should be telling hia classmates though. My gut feeling is to get it all out in the open so it's not taboo, but I'd hate for it to be used to taunt him.
You can always leave it up to him to tell people.
I guess my query is that the kids do ask the teacher what is "wrong" with DS, and ask why he is like he is. She is answering all their questions well and teaching them about diversity and inclusion and acceptance etc but she has never used the word "autism" or "autistic" . Is that good enough? The right thing to do?
I think it is better to say it's autism. It will help ds too to feel comfortable saying it.
It kind of makes it seem like it's some kind of Taboo word, if it's avoided.
We told our DD when she was diagnosed at 5. She just accepted it and now at 6.5 the knowledge is helping her make sense of herself and its helping her define her identity - in a positive way. We've had no negativity from her (or others) about it.
Yes definitely be open about his diagnosis. Autistic is fine, so is different, don't use special.
I would talk about all his skills and strengths, then talk about some of the things he finds difficult. Explain that these groups of strengths and difficulties mean that his brain is wired in a different way and that is called autism. This means that he might need some help with some of the things he finds difficult and that's ok. His strengths will help him do really well in life.
I would allow it to be his choice as to whether he wants other people to know or not. It's often quite helpful when other kids know at that age.
Ok , thanks so much for the advice, it's kind of confirmed what I thought we should do, but other family members were doubtful. I definitely think if he's happy with his autism then it takes away the power of other kids to use it as a taunt....
-hey, you're autistic
-yes, I know. It's not a problem!
Definitely. We talk at home about how it's good to be different, that being weird etc isn't bad, so when kids tell ds he's weird he usually replies 'I know, thank you' and walks away.
We took a little while to digest the information ourselves before we felt ready to tell him, and even then it wasn't a big sit down and have a chat thing, more just dropping things into conversations here and there.
He's generally been quite aware of things he struggles with, so our explanation started with telling him that the doctor had told us there was a pattern to the things he found difficult and that pattern is called Autism.
I wanted him to know from us rather than hearing it in an appointment or something somewhere else.
I'm not sure we've handled it that well, DS is extremely uncomfortable with the idea of any of his friends knowing or commenting on anything (like his pencil grips/sensory breaks/using an ipad for written work). Mind you he also hates anyone commenting on his clothes or haircut so it may simply be that he takes any sort of personal comment that way.
He's happy to talk about it at home, and fortunately with his teacher so I hope he becomes more comfortable over time.
The my autism and me film has been good, we've watched that quite a few times. He's also enjoyed the Kathy Hoopman book, the blue bottle mystery. Somewhat less impressed with all cats have Aspergers, I was told in no uncertain terms he is not a cat.
I usually use the example of my diabetes. It's personal information that I don't need to tell everyone I meet, but it's often helpful for people to know so that they can help me and keep me safe.
My view is different - Tell them when knowing about their autism will actually help them. My DS is happy and has never asked any questions about his abilities- he would not find a diagnosis empowering right now, he would be very very confused. I gently tried to explain to him about speech / language delay and he doesn't think he has that. He knows his friends have Autism but still has no capacity for self reflection. If someone told him he had ASD he would say he doesn't. So we wait for the right time to tell him.
I found this article helpful - this young man's parents didn't tell him until later in his life and he felt it was best for him.
It really really depends on the child. I know a few children who have been told who really really found being told to be painful and sad.
Tell them when knowing about their autism will actually help them.
The reason I disagree with that is if you wait, your child will have already noticed that they are different. They will become aware of the fact that you have kept this information from them and that would indicate that this is something to be ashamed of. There must be a reason why you kept it secret.
It also may come as a bombshell. They believe one thing about themselves and you have just shattered that with this news.
It's also an impossible judgement call. How on earth is any parent supposed to be able to guess when it will help? I guarantee that if you don't tell them, someone else will - a child at school with an autistic sibling or a parent who realises. There is so much more awareness these days that kids in Infants who could well be aware.
If you tell a child before they are old enough to understand then it will always be part of who they are. It doesn't need a long explanation, it doesn't matter if they don't even understand, the words will be in free use in the house so when they start to wonder what it means, they can ask questions to get more detail.
You wouldn't wait until children were old enough to tell them other important information such as being adopted or teaching them where babies come from. You give them information in age appropriate language a little bit at a time so they can slowly make sense of it.
The reasons for not telling a child, as explained in that blog, are flawed.
There is absolutely no need for this to be presented as something that can ever be used as an excuse or should be in any way limiting. Those issues are very easy to address. There are lots of stories of very successful autistic people who show that there are no hard and fast limits. And if none of the adults allow it to be used as an excuse, then it won't be! Every one of those disadvantages can be dealt with.
I do like the list he has at the bottom about how to tell them.
This link gives a very good explanation as to why you must tell them.
There is no reason not to tell them in my opinion.
The reasons for not telling a child, as explained in that blog, are flawed.
I think you mean that you disagree with the reasons. This is a subjective discussion. It's not a moral issue and there is no right or wrong answer. There are individual children and what is right or wrong for them may vary.
Some children are not ready to manage this information as soon as others.
We have books about ASD around, my DSs peers know about their diagnosis.
Not all children think or notice that they are different. Mine doesn't.
It's ok to have different opinions about this. I just wanted to share a different opinion to the prevailing view that I see presented here.
I appreciate that you think that all children should know and grow up knowing. Clearly you feel very strongly about that, it's fine.
You need to tell him. He will already be quite aware of his difficulties, and it will help him feel more positive about them
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