Do I Tell Him?

This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.

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25 Responses to Do I Tell Him?

  1. Emma Sowden says:

    Very poignant and my heart goes out to you both, our son is 7 and he ‘knows’ but we’ve not told him specifically, but because he’s asking, perhaps now is the time but you don’t have to use the label, ‘autism’ just that he does need a little extra help with learning and life. My youngest is 5 and we explained it to him as he wanted to know why his brother did ( or didn’t do) certain things and he is so protective and helpful! The right time will come! Em xx

  2. StephsTwoGirls says:

    oh gosh, it’s such a tough one. Our soon-to-be 6 year old has not yet asked but I guess I should prepare myself for when she will. My first gut feeling would have been yes, tell him. But then I totally see your point about it being the edge of the cliff in a way. You won’t be able to go back. But he won’t have actually changed and he will have to know someday, and possibly the sooner you tell him, the easier it’ll be, and less of an issue. So yes, it may be difficult for you now, but better for him in the long run? Close call though, good luck whichever way you go and try not to stress about it too much. No-one can say what’s right or wrong in this parenting malarkey game I’m afraid. Wish there was a handbook!

  3. jas2jar says:

    Its a tough one. We told our son when he was about half way through the first year of school, so about aged 6. We bought a book called Morty the Meerkat has autisum which we read with him – it has since become his resource for letting new adults in his life know about him. We just told him he has a special brain which means sometimes he does things slightly differently to other child, and that was enough to help him understand why he got more support than other children in his class, and other such issues he raised. We have since had to answer other questions but nothing too taxing.
    When our second son was diagnosed with Aspergers he asked what the doctor had said about him, and we just said that he has a special brain similar to his brother, and his response was, “oh, so I have autism too!” And that was all he needed to know.

    To tell or not to tell is a question only you can answer as you are the expert on your child.

  4. Alan says:

    Another very well put and thought out blog. We have already started preparing our son R who is 5 today. We haven’t celebrated his birthday however and have instead postponed it until next week as he is having a difficult time at the moment (this is alien to my family).

    Anyway what we have told R is that he has a ‘different brain’. He is aware of what his brain is as he has a fascination with zombie games in particular plants v zombies where they try to eat your brains so we have had that conversation. He asked me once why he hurts people and why he doesn’t talk to people and I explained that it was because he had a different brain. He said he wanted a brain that didn’t make him hurt people and one that talked to people which was both insightful and sad. Anyway we have built upon that and now he understands that the reason he is different is because of his different brain. I intend to show him an MRI scan of an autistic persons brain v someone without it as a visual aid. There was a great post by an autistic author recently , I will have to look it up again. Our hope is that he will come to accept this just as others with different disabilities have come to accept theirs. This is not an easy subject to approach so I understand your apprehension. It is yet another curve ball sent to test you as a ‘super parent’. As I have said before that’s what we all are, super parents trained and put through the hardest parenting boot camp known anywhere, the marine elite of parenting. Keep smiling and enjoy those days you get like today.

  5. Alan says:

    This is is visual aid I mentioned, Temple Gradin’s brain on the left (autistic), non autistic brain on the right …'think+different'&hl=en&tbm=isch&ei=9u6XUanxBamq0QWghYDgBQ&start=20&sa=N#i=4

  6. Lynn says:

    You write with so much love and care…

    Here are my thoughts on this kind of situation…for any need … for any explanation..
    -if he is asking a question, he is noticing something and deserves and answer
    -the question he is asking may not be what is foremost in the parents minds/or as what you think was asked
    -a young child asked his mom where he was born, she gave him a child version of sex ed, and he listened politely, and then said, oh, but in “what town”….
    -try to check what is being asked…
    Okay, I have used some version of this, with many kids/in many situations, and , as a kid has questions or notices more, or can handle more, they will ask…(as long as they have in their mind that you are “askable”)
    -“why do I have an aid?” — “you need help with …. And…………..etc”
    -and, don’t be surprised if at some point, he says, “oh, I could do that on my own”…..”—would he be allowed the chance to try?”

    Kids/all kids/may “notice””understand” more than you realise…
    Here is from when my son was three
    The two of us were sitting in an ice cream shop, enjoying sundaes
    It was very crowded…
    He notices that two older folks each have some type of arm canes..He asks me why. I reply..”well they need help with walking. That helps them walk”
    He has a loud / clear voice/easily carried throughout small restaurant.
    He considers this for a moment.
    Then in a louder / clear voice , small son follows this up with comment..
    “Oh, they need help, Just like you and Dad need help..”
    Well, God Bless me /him, my mind went wild with what he might say, but, feeling had I to validate his thoughts,
    I bravely pressed on…”Oh, what do Dad and I need help with?”
    Small son says..”You and Dad need help to see. You both have glasses” all said in a voice as to question how I did not know this,
    And the small shop filled with quiet chuckles, as they were all wondering what he would say..

    Anyway, the thing I was trying to say, is everyone does need help with something, and your son, may realise such…maybe that is enough….on the other hand, if he asks “does this have a name?”…well then….

  7. Amber Perea says:

    Oh, I teared up when I read this! It’s such a huge, weighty thing to bestow upon a child…yet also a part of who tey are so it’s incredibly difficult to know the right answer. In my most humble opinion, if he is beginning to see that he is different, then perhaps it is time to have A conversation with him. Maybe not THE conversation, maybe you don’t have to use the word, per se, but you don’t want him to feel that he is “difficult”, either. Right? Special may be too vague but Autism is a large leap, as well.

    I don’t think there are any right answers here and I wish you the best of luck with whatever you choose. 🙂

  8. louise says:

    I have been asking myself the same question. It worried me too, I then found out that L wrote in his school work that he had a special card for Queue Jumping, His teacher said – He knows more than you realise – and then during the Easter Holidays Newsround had a “special” programme. L was watching it – and I quietly said – that’s the same as you, and one of the boys in the programme was fascinated by World of War (or something) L’s reaction was – like me and Minecraft. This is probably making no sense at all, but L “found out” naturally, and it wasn’t as scary as I thought – he just accepted it and carried on, and a few weeks later the Girl in the programme was on another program, L said – Look we have to watch this programme! It’s “Her” again. I learned that the time to tell L came naturally. Maybe your time will come naturally too? If it does, just go with the flow – I hope this makes sense.

    Best wishes

  9. louise says:

    The Newsround Special Programme was extremely well presented, by Children, it was not stereotypical at all – they treated it as “normal life” – the main presenter has Aspergers, and has a younger Autistic brother, if you have IPlayer it may be worth watching the programme, as I said above, I didn’t realise it was going to be on, but it took away the “when do I tell him – what do I say” worry, it was a great programme.

  10. tric says:

    Your child will take its queue from you its parents. Autism is just a word to your child. Questions are being asked so maybe you should answer in some way. Your child may take a step backwards but will then move on.

  11. They need to know as much as they can understand. We told our daughter, and she was fine with a simple answer. “You have autism, we don’t understand it all, but to help you understand and do your best, your helper is there.” Our daughter was adopted and also was fetal alcohol. It helped her to know that some of the things she was doing were because of that. It wasn’t an excuse to obey badly, but to understand why she has to work so hard to do some things, and we love her all the same.

  12. As always, love your blog.
    Didn’t tell L until she was 9 and she’d been expelled from her mainstream school for throwing her shoe at the headmaster’s head during one of his long rambling speeches in assembly.
    She didn’t seem to take it in or comment on it until years later when aged 18 she said ‘I didn’t know I was autistic until I went to special school’.
    At the time she didn’t have the understanding to take in the ‘you are autistic’ talk.
    A friend of mine waited until she had breast cancer before disclosing to her son that he had Asperger syndrome but it turned out that he knew already and was waiting for her to confirm it.
    We told our son instantly but he was ten and reading all the books written by people who had diagnosis’s in their 20s and 30s I’m sure I did the right thing. He felt like an alien but at least he knew why.
    My suggestion is to tell him before someone else does. It would be ten times worse if he comes home and someone had told him and got some facts wrong or in anger. Tell him about all the inspirational figures in history and now who have ASD – Bill Gates etc…
    Good luck !

  13. This is a different situation I know, but when our older son was diagnosed with dyspraxia at 7, we decided to tell him straight away. His response was relief and when I asked why he was so happy he said ” It explains to me about myself “. Further discussions clarified that he had feared he was ‘stupid’ and that other people shared that view. Knowing that there was a reason for his lack of coordination and organisation raised his self esteem no end. I wonder if fearing he might be ‘difficult’ may be harder for B than knowing he is autistic?

  14. M says:

    I think there’s two sides to this coin. Whilst having the conversation when your child begins to ask about the differences- and then follows with the “why’s?” is important, it’s also knowing when your child is emotionally ready to accept some of the answers no matter how toned down or gently put these answers are.

    Part of being autistic as we all know from our children is the tendency to just say things as they are not taking into account the audience and I think this is an important point to make. Whilst doing the best for your child is telling them “something” when they ask about their differences, you have to also bear in mind their audience – other children. And kids can quite frankly be cruel. Whilst you can control the setting and how you have the conversation, you can’t control the situations in which your son might talk about this and therefore can’t protect him from that. Whilst I understand this will be true years from now, the main difference is time and maturity during those years which will change not only your son but that audience too.
    I think it’s important to face the questions when they are asked but tailor the response in the best way you see fit for your child.

    I believe no child likes to think of them self as different -but as we get older I think the majority of adults in fact like to think they are different to the man/woman next door, better, funnier, smarter etc. Maybe theres something in that and by using this as an example when explaining differences. So, maybe dad talking about how grandad likes to mow the garden in straight lines from left to right and needs granny to help and how dad does it across the garden from top to bottom means both grandad and dad mow the garden and the outcome is the same, but how they do it is different. I’m sure there’s a better example out there but hopefully you can see my point.

  15. ASD Dad says:

    Our son hasn’t yet asked, but his n/t twin knows something is different. So, a little while ago we began referring to C’s autism as “ASD” (not autism), and talking more about the characteristics than the label itself. For example, if C’s stims are a bit out of control, we’ll mention to his twin that C’s ASD is causing him a little grief at the moment. But, we also talk about the good stuff, too; for example, we talk about the fact that C is reading years beyond his age as due in part to his ASD.

    In other words, we talk about the attributes of autism, not the label. When C begins to ask, if he ever does ask, we will likely do something similar. We’ll talk about the fact that his mind works differently, and that means he has some very special abilities, as well as some extra needs.

    Nonetheless, we’re not at that point yet, and I don’t envy your situation at the moment. Please know, though, that you and your wife are clearly loving, concerned, conscientious parents, and that is going to matter much more in the long run than the label.

  16. Ann Kilter says:

    I guess we told our kids when they were in elementary school, and explained more fully when they began to participate in IEPs. They didn’t receive their diagnosis until 5, 7, and 9 years of age, so we did need to process it ourselves. Maybe we were late, but we had the “talk” when we judged that our kids were ready to hear it. My youngest daughter was mad and refused to accept it. My son was felt hurt and had to think about it for a while. My oldest daughter accepted it because she knew already, being in an autistic classroom. But she has always been more sanguine.

    Just wait until you have the talk about the birds and the bees! We had to have that talk with our son because he was very interested in girls. Girls were more accepting of him, and he sometimes took their friendliness for something more. Etiquette and boundaries toward the opposite sex involved a lot of talking, rather direct instruction. This was no time to be subtle. We were helped by compassionate teachers, and compassionate girls who would go to those teachers and ask for help. They didn’t want to hurt my son’s feelings, because they knew he had autism, but they couldn’t handle the staring. He thought they were his girlfriend, so he would monopolize the position of standing or sitting with them. I know this is off topic, but it is another “talk” you will likely have in the future.

  17. Laura Lo Prato says:

    You have to. Out of respect.

  18. samedifference1 says:

    As a disabled ‘child,’ now an adult, I have always known there were things I couldn’t do. My parents explained things to me from a very early age- don’t remember exactly when- like name of my disability and that I needed medical appointments, etc.

    I’ve always been glad that they did.

    So I suggest you tell your son at whatever level he can understand right now. If he’s anything like me he will thank you later.

  19. Al says:

    Hi I don’t think my 5 year old would even comprehend it at the moment but I have explained to his brother. It’s interesting his reaction, he is very clued up about the fact his brother has ‘disabilities’ but he is not keen on the ‘autism’ label. He’s never said that to me but the word is all over our house and he has always ignored it, even though he is someone who notices and questions everything. Sometimes he gets annoyed with his brother and says he hates him but if I get cross with his brother he is the first person to leap to his defence, so I know he loves him really!

  20. Sandra says:

    Please consider reading ‘Disability is Natural’ by Kathie Snow before offering up explanations. ‘Disability’ is just a medical diagnosis – your son is not autistic, he has a condition called autism.

  21. Anna M says:

    Some great advice here. I quite agree with “tell him before someone else does”. I have told some of the other parents whose children will be in my son’s class and I know from experience in the classroom that the teacher will explain to the children why X behaves differently and needs their help. Some won’t take it in but others will. Some have ASD siblings so are aware of what it means, even at 5.
    It’s like sex education, if they are aware enough to ask the questions they are ready to hear an answer.
    Looking forward to hearing how it goes for you.

  22. bluejays93 says:

    wow thats a really loaded situation to be in. I dont look forward to that with my child. i do agree with “tell him before someone else does”. My daughter isn’t aware shes different but i know one day she will ask. I have had her classmates through the years ask about autism what it is about.

  23. Everyone has their own take on this. I started to tell L before we even knew anything ourselves, right from the first moment we went to the GP because he was overhearing things anyway. I just explained something along the lines of he sometimes he might think a bit differently and we wanted to check because then school would understand better and so would we. He asked what he wanted to know and his understanding grows as he gets older but he’s very comfortable with it. Different, not less is the maxim and I like to show him that he doesn’t have a defect, just a difference. I’ve always made it a cool difference and explained the things that it means he does well (such as having a photographic memory for where he’s seen an object). When he looks for things he will say ‘Asperbrain engaging, Asperbrain engaging’ quite proudly. With my psychotherapist hat on, I kind of think that the earlier you talk about things, the more accepted they are. Adults often have a whole load of emotions surrounding a topic whereas children don’t have all that so take things very differently. It’s worked for us but each family has to do what works for them. I have total faith that you will do the perfect thing at the perfect time!

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