When and how to tell him he’s autistic?

There was a time that I thought I’d never have to deal with the question, of when and how to tell my son he is autistic, since his autism was so severe that it got in the way of meaningful communication. But his language and comprehension have advanced to the point that the question is inevitable, and I find myself thinking it over on almost a daily basis.

Every adult in his life – and a few children too I suspect – know that he is autistic. So I cannot control whether and when he hears the word, not for lack of trying though. I’m so mindful of him potentially asking about it that I’ve personally stopped using the words “autism” and “autistic” around him; he listens closely to those who talk around him and frequently interrupts with questions. I haven’t stopped using it because I think it is a bad word, or because I don’t want him to know he is autistic. Rather, I want to make sure that when he asks and when I answer, that both him and I are capable of making that conversation go well.

I’ve been slowly preparing him for the conversation by simple consequence of answering his questions about people in wheelchairs and blind people, diabetics, asthmatics, etc. Even when we talk about the fact that I wear glasses. Those conversations always take the track of me saying that some people are born with these challenges (or “problems” being the term he uses and understands), and some have accidents, and some get them as they age. That most people have “problems” of some sort, but that’s OK, because we’re all different anyway. That even twins are actually different, even though they look almost the same.

So it won’t be long before he asks if he “has a problem” too, and what it is.

But I’m not sure yet how I’m going to explain it to him, though I have a general idea. I’d remind him that everyone has special challenges they face – like mummy’s eyesight and great grandma’s knees – and that his challenge is called autism. That autism makes it harder for him to do things like talk and makes him do different things like hum and flap when he’s happy, but that it also has given him a great memory and has made him very good with details.

Already though I have a problem with that explanation, because I am worried he will think having autism means he has an excuse for not trying hard to improve his speech, or to modify his behaviour (for example, we’ve been working hard to get him to stop humming so loudly when others are trying to watch TV, and we’ve been trying to stop him doing a weird and annoying thing he purposefully does with his speech sometimes that he thinks is hilarious but is really irritating for others). He’s smart enough to see and use autism in this way. I need to find a way to convey that autism is an explanation not an excuse in this manner, and I’m still trying to figure out how to convey that subtle but important difference to a young boy.

It would be easier to do it when he’s older. So if it was more under my control – if I could have him not ask until he is older – what is the right age? I’ve read that you should have the conversation before puberty, since the child goes through a lot of personal changes mentally and physically at that point, and they need answers to why they are so different than their peers. But I think the driving force needs to be the individual child’s developmental stage; are they individually ready to understand what autism means (and doesn’t mean) in their life. Surely this won’t simply be “the age of puberty” for every autistic child.. or will it?

I don’t see not telling him as an option, because someone will tell him sooner or later, or he’ll figure it out, and I want to make sure the “revelation” is delivered in a kind and accurate way. I also don’t want him thinking that I held something back from him that he should have been told years before.

The fact that he attends a special needs school is helpful in some ways. He is surrounded by difference – by children with various challenges – making it easier to explain strengths and weaknesses and the normality (as such) of those differences in the world around him. In some ways being in a special class will, I think, hold the question of autism off for a while, since his difference from “everyone else” (a normal classroom full of NT children) is obviously less pronounced. However my son has figured out that he appears to attend two schools (the consequence of attending a satellite class) and that there’s something a bit different about his classroom compared to the other classrooms, which might also speed up the eventual more general question as to why his schooling is so different.

I don’t want my son to think of himself as significantly different, but I need him to eventually understand that he is; it will be important for his interactions with and expectations of others, and his understanding of himself. I want him to grow up unencumbered with these questions; I just want him to live a happy life with little in the way of limitations of what he can aspire to do with his life. The fact is that there are limitations, but I think him knowing that too soon or thinking about it in the wrong way, will hold him back from what he might have otherwise achieved and become.

And so these issues go round and round in my mind. I don’t know the answers, but I know I need to find them if they exist. Maybe there are no “rules” here; it’s just what works best for my own child whenever he’s ready to find out. But if you have answers or insights, or just some reassuring words, do share them. Maybe they will help me be ready at the same time as him.

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18 Responses to When and how to tell him he’s autistic?

  1. Karen says:

    Amazing post. I have a younger sister with Aspergers, and so far I’ve been the only one in the family to make any effort in talking to her about her Aspergers. She’s now 20, and while she knows she has it, she’s not entirely sure how it affects her. I tend to give her little bites of information about it at certain times – for example, if she gets really anxious about a certain sense, I talk to her a bit about her sensory challenges and sensory overload. I kind of just present the information to her in a way that she can see how it directly relates to her, rather than giving her a generic definition of her condition. But I absolutely agree that it will be different for different kids. Go with your gut. 🙂

    • Thanks Karen, and that sounds like a very practical and kind way to talk about the impact of Aspergers. I think I’ll utilise something akin to that over the years that follow the eventual discussion, to reinforce and better explain to him how autism affects him and what it means.

  2. Aussie ASD mum of 2 says:

    What a great question? I think the answer will be different for everyone but here’s my story of telling my eldest.
    I have 2 sons with ASD the eldest was diagnosed with aspergers / high functioning ASD and ADHD @ 4.5 years old and my youngest was diagnosed with Autism (I think most likely the same as the eldest) @ 2.5 years old.
    In Grade 1 (6-7 years old) we had a really bad year with his teacher and we thought it would be best to tell him about his ADHD and see how it went. He seemed to take it well but struggled to really understand what it was, ironically we read him the book all dogs have ADHD but he didn’t have the concentration levels for it. We had a great year this year with a fantastic teacher and he was very settled, she even got him into blogging and he earnt his own blog which has helped with so many social skills. Since he was doing so well we decided to tell him about his ASD and read him the story all Cats have aspergers. I think it answered many questions he had developed about himself.
    We had the big questions like, why me? will I ever grow out of it? and who else has ASD that I know? I don’t think I could of ever fully prepared myself for my responses and had to fight back the tears a bit as the realisation hit him. However I made and still make the effort to point out the positives that come with ASD which I do find him focusing on more now. I think for him having a younger brother who also has ASD did help as he didn’t feel alone.
    We decided to give him the “power” over who he tells and doesn’t tell with the exception of those who “need” to know e.g. teachers etc. He decided he didn’t want anyone to know encase they make fun of him but just the other day he told me he wants to tell all his new class mates when school starts back but that doesn’t have the courage to. I suggested that before he does that we sit down with our Vice Principle as she’s very supported and ask for her opinion as I’m a bit apprehensive as I don’t want him to get negative feedback about having ASD as we try so hard to make it as positive as we can.
    Sorry for my lengthy response but I like all things related to ASD nothing is straight forward. Good luck with what ever you decide.
    Aussie ASD Mum of 2.

    • I really appreciate your response Aussie Mum, there are some points there I hadn’t even thought about before, like telling him who else he knows that has ASD (he has a few classmates with it) and the question of who he may or may not want to tell for himself.

      I like the idea of using a book to support the discussion too, I’ll look into the cat one you’ve mentioned, thanks 🙂

  3. Sharon says:

    I will be following this topic with great interest. I had kind of hoped we would talk so openly about autism it would just sink in naturally but the older Harri gets the more I think that’s a cop out on my part. Telling his sister who just turned 7 went well so I hope when the time comes in a few year down the track I’ll be prepared. It’s a massive moment that you really want to get right isn’t it?

  4. KDL says:

    We are currently struggling with similar issues. My daughter was diagnosed HFA at age 4.5 years. At that time she didn’t have the receptive or expressive language to really talk with her about her challenges, and she was unaware of any differences between her and her peers. She is now almost 8, is increasingly aware of her differences, and I just recently started talking with her more openly about autism. I struggled with how to do this all Summer. I finally started by writing a social story with her (still a work in progress) about how everyone is different. One afternoon I finally sat with her and told her that her brain is different, that the difference has a name “autism” and some of the ways that we’ve seen this affect her. To head off the “excuse” approach I explained that we have always worked hard to find other ways to do the things that she needs to do. She also wanted to know who else she knows who has autism. I also explained that some people have “a lot” of autism and some people have “a little” and told her that she has kind of a medium amount. That was the best I could do to explain a spectrum. Her response, after a few questions, was to move on to other topics completely. She hasn’t asked anything else about it. Like you I continue to answer more general questions about other peoples’ differences by saying, “Everyone is different.” I’m sure it will circle back at some point. Meanwhile now that I’ve broken the ice I intend to be much more open with her. The next stage for us is figuring out which peers should be brought into the circle of knowledge. Since she is mainstreamed I’m beginning to worry that some peers might misuse the information, but I do want her to have some friends that truly have her back. This is critical and I’m hoping to have some steps in place before the end of the year.

  5. I think you can tell him any time you like. Whether he accepts or understands it is up to his ability to handle it. Kinda like telling your child about sex…(Sorry, but it fit the bill). And maybe like sex, if you present it positively rather than implying he has a horrible disease,well, that is up to you. ( I know you will present it positively, just running with the example)

    My son is 18 and rather sex-obsessed, so I tend to see everything through the glasses I am currently wearing. Look what you have to look forward to!

  6. Hilary Stace says:

    Our kids are pretty smart and know a lot more than we think they do. The cotton on pretty quickly (from early days even pre-school) that they are different and need the words to explain this to themselves and other people. They hear the adults talking about them, and make whatever sense of it that they can. (There is an academic paper that confirms this quoting a child – and it is the title of the paper – ‘Chocolate…makes you autism’).

    My older child had leukaemia as a 5 year old (it has shaped her life but she is a healthy adult now) so we had a bit to do with children with terminal illness, and parents and professionals concerned to protect them. The young children certainly know what is going on and I heard cases of children as young as three instead wanting to protect their parents from the truth so putting on a brave face when they themselves knew they were dying, and in one case carefully saying goodbye to all their human and toy friends before dying peacefully. My daughter needed to know the basic facts or her condition in child-friendly language so she could counter the inevitable cruel comments of other, often older, children (eg ‘my mother says that when your hair falls out you are going to die’, or ‘cancer is catching’).

    If they are not given the correct information children will often blame themselves and wonder why they are different to their peers. Autism social groups are often a good way for discussion to arise. The book ‘All cats have Asperger’s is a bit abstract for autistic kids but useful for explaining to siblings and friends.

    However, they also need encouragement that they have personal agency and can’t blame their behaviour on the autism – eg ‘I hit that boy because I have autism’ instead, ‘because I have autism I get easily stressed when I am interrupted from doing something I am really interested in, so please give me some gentle warning when change is coming such as a visual cue’ is a bit pedantic, but gives the general idea.

    • Very helpful, thank you Hilary.

      By the by, I don’t suppose you know of another book that might be better suited to using alongside telling an autistic child that they have autism? I’ve been hunting through a few possibilities and can’t find something that really suits.

  7. Penny says:

    Hi, I’ve previously seen some of our comments on another blog and so I thought I’d check out this one. I told my 9 year old son last year in October. Here is a little of how it went…

    I started with positives. I told Edward that he is a very clever boy and he can do some things that other kids his age can’t do like complicated division and decimal places in maths etc. I said this is because he has what is called “Autism”. Then I continued to tell him that sometimes he doesn’t like to be around large groups of people and that he needed help to learn how to talk and that is also a part of Autism. I kept it all very brief. He simply said “Oh”. Then paused then went on to say. “Hey, did you know that the world record of….” blah, blah, blah… off he went into statistics about something.

    I let him go for a couple of minutes then interrupted him and told him that I have a book he can read if he would like to about a boy just like him. He didn’t want to read the book but I went in and got the book to show him as he is very visual. I flicked to a couple of pages with basic pictures and showed him and he just said “Oh”. I told him he can ask me any questions at any time if he wants to and that he doesn’t need to tell anyone else. I told him his grandparents know and that there are other kids that have autism and he’s not the only one. Then he went in to play the computer.

    So all that worry and sleepless nights for nothing. I’m so glad it went well and that when he gets older he can hopefully feel like I haven’t kept anything from him and if he does have any questions he can ask me.

    There is no set age, you will know the right time.

  8. Janine says:

    If you haven’t used it already, I highly recommend the IHC Library (www.ihc.org.nz). It is free to join and issue items and has a lot of resources such as picture books, DVDs and hands-on workbooks that can help to explain ASD to children. I’ve listed some of the ones I’ve found helpful below.

    • Santamauro, J. (2009). A special book about me: A book for children diagnosed with Asperger syndrome. London: Jessica Kingsley.
    An introductory support for a child diagnosed with Asperger syndrome. Includes poems, stories, illustrations and activities to help them understand diagnosis.

    • Kershaw, P. (2011). The ASD workbook: Understanding your autism spectrum disorder. London: Jessica Kingsley.
    An easy-to-read combination of readings and interactive workbook to help parents or professionals explain ASDs to a child. A strength of the book is its focus on presenting ASD in a positive way. The book is structured so that relevant chapters can be explored as the child grows older and their needs change. Chapter topics include: What is an ASD?, core characteristics of ASD, family life, friendships and relationships, strengths and interests, school, work life and self-help. Suitable for children from intermediate age onwards.

    • Center for Spectrum Services. (2009).The Asperger’s difference: A film for and about young people with Asperger syndrome [DVD]. New York: Author.
    A documentary designed primarily to help young people with Asperger syndrome understand their diagnosis, including both its challenges and positive aspects. Follows the daily lives of three teenagers as they gain greater understanding about themselves. Could be also be used for peers, siblings, teachers and employers to help them better understand. Includes a discussion guide with stimulus questions around the eight sections: (1) What is Asperger syndrome?; (2) Social and communication skills; (3) Thoughts, behaviours or interests that are difficult to control; (4) Teasing and bullying; (5) Positive aspects of Asperger syndrome; (6) Diagnosis; (7) Self-disclosure & self-advocacy; (8) The future.

    • Faherty, C. (2006). Asperger’s … What does it mean to me?. Arlington, TX: Future Horizons.
    Presented in workbook style to help young people with Asperger syndrome and HFA understand themselves. Sections for helping parents and teachers the young person accompany each chapter. Topics covered: introduction to autism, ways of thinking, sensory experiences, artistic talent, people, understanding social interactions, thoughts, communication, school, friends and play, and feeling upset.

    Picture books:
    • Peralta, S. (2002). All about my brother: an eight-year-old sister’s introduction to her brother who has autism.
    • Lears, L. (1998). Ian’s walk: a story about autism.
    • Ely, L. (2004). Looking after Louis.
    • Luchsinger, D., & Olson, J. (2007). Playing by the rules : a story about autism.
    • Bishop, B. (2002). My friend with autism.
    • Edwards. A., & Dineen, T. (2001). Taking autism to school.
    • Van Niekerk, C., & Venter, L. (2006). Understanding Sam and Asperger syndrome.

    Also, related to your previous blog, this DVD explores the paradox: Is ASD a devastating medical illness that needs to be cured or is it a variation of the human brain and just a different way of thinking?

    • Drezner, T. (2011). Loving lampposts: Living autistic [DVD]. USA: Cinema Libre Studio.
    The DVD takes a look at the two models: (1) the recovery movement, which views autism as a tragic epidemic brought on by environmental toxins that affect the immune system, where the aim is to ‘normalise sufferers’ (linked with special diets, chelation, hyperbaric oxygen therapy, acupuncture, etc) and (2) the neurodiversity movement, which argues that people with ASD should be accepted for who they are and supported to develop functional skills and quality of life (learning to live with autism rather than trying to recover from it). Features stories of individuals with ASD and their families from both sides of the debate and all along the spectrum plus interviews with various ‘experts’ such as Simon Baron-Cohen and Stephen Shore. I found the film informative, thought-provoking, personal (Drezner’s son has ASD), compassionate, and moving.

  9. Hello A&O,

    For my family, it’s shaping up to be a process rather than an event; a series of age-appropriate conversations over time. I’ve gotten a lot of inspiration from my own parents in the way that they told my younger brother he’s adopted.

    It’s tough. Even for many of us adults, it can take years to get our heads around it. I think you’re doing a great job and wish you all the best. Cheers.

  10. Erytheia Red says:

    Throwing my opinion to the wind: Autism is just a thing you have, like being adopted. It is concrete and unchangeable. Plenty of people have danced around the issue of adoption for years and whether or not to tell their kids, now the dominant philosophy is to just be public about it, for health reasons, for the mental well being of the child having an adult who speaks to them with honesty, and for any other number of a myriad of topics. In my family, with a nephew adopted from Guatemala, and a niece from Ethiopia, and us being very white Germanic/Irish/British American mutts, we don’t get to ignore it, or the strange looks from parents or kids or the pervading sense that one should be somewhat embarrassed for having this mixed looking brood when you go to the playground. Racial issues aside, and adoption analogy aside, a label is just a tool there to help officials who need that concrete battery of tests and whatnot to determine the services and the privilege of having access to those services, and legal protections when one is in school or a workplace or anyplace and being treated with prejudice.

    As a rule, they are also helpful for using to quickly explain to people who don’t understand why someone is behaving in a different way for the genuinely curious or those who are upset by what they are observing and feel honestly threatened. You could say your son was Zargkpplg, the word doesn’t actually matter here, people would nod and politely ask you no further questions (in your dreams, maybe!) and scoot farther away. As someone who carries those sorts of labels around, I tend to only dish them out very sparingly–when people ask questions usually, and are the open minded sort. I don’t bother using them with professors or with employers. I go for an accommodations list then, and get a letter that explains what I need from them to do whatever it is they want me to, to make it legal and as impersonal as possible, and I haven’t had to really pull out big guns like diagnosis and you can’t be prejudiced against me because I have ADHD or whatever–actually they can if I’m not doing my job or working with them to solve the problem and exhaust every possible avenue. But people don’t LIKE hearing those terms, they make them uncomfortable. Using a diagnosis label or set of labels isn’t helpful to the kinds of people you run into in life who have to interact with you and you with them, community types. But people actually ask less questions the older you get. People don’t understand what they mean in relation to THEM and we are kind of a self centered breed. They do far far better if you talk about the thing that is easiest to talk about, which is behavior because they can observe that for themselves. People understand behavior. You see a guy, looking in windows of a neighbor’s house and he doesn’t belong there, and then oh look he’s breaking in, you call the police.

    As for your concerns that the term will be an excuse for him–you already parent with a firm grip on trying to work on behavior issues, and all the things that give your son difficulty, and all the struggles he has that you’ve described here. You set firm, kind, strong limits and boundaries, and every one of his classmate peers is different and has their own struggles from whatever diagnosises THEY have.. I am pretty sure your son is not going to throw himself into a state where he will determine he can’t do xyz and can you go fetch him a drink with an umbrella so he can relax as his autism has taxed him too much today or he can’t go up the stairs because MUM I HAVE AUTiSM! without you keeling over to such a ridiculous notion. Children always push limits, autistic or not. I’m waiting for the day when my nephew says to his mother “I don’t have to do what you say, I’m ADOPTED.” You aren’t going to let him run wild over you just because you explain that there is a term for the particular types of struggles he encounters. You already work with him on his struggles, and I think from what I read here you are doing a great job. And I imagine it will be just another word to him as described by the mother in the post above about her experience with her son going back to what he was doing. Words can be tools and words can be weapons. But they give us truth and understanding, and he trusts you well enough I should think that being honest with him about such an emotionally charged word would be absolutely ok for you to do, even starting now. Your hesitation is less about him and more about you I would guess, since he doesn’t really even know yet about all of the discussions and culture and debate around this particular word. But he knows what it is like to have it. And he’s going to have it forever, and that is actually quite ok. He’s coming along really lovely as it it, from your stories of him, even on his bad days. 🙂

    • Thank you Erytheia.

      What I’ve decided to do at this point is bring it up with him next week. I made a personalised book for him, explaining it in the words I think best and with the tone I like best, that should arrive by next week. It has photos throughout of him and his various family members too, taking about our differences and his difference. I couldn’t find a mass-produced book which did it the way I wanted, so this seemed like the best option for supporting a conversation (he’s quite a visial learner too).

      I suspect I’ll be writing another post after that intial conversation, to share how it went.

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