November 1, 2013

You should tell your kids that they’re autistic.

Posted in Uncategorized tagged , , , , , at 1:10 pm by chavisory

How hard it is to say what it was like
in the thick of thickets in a wood so dense and gnarled
the very thought of it renews my panic.
It is bitter almost as death itself is bitter.
But to rehearse the good it also brought me,
I will speak about the other things I saw there.  (Dante’s Inferno)

I’ve seen this passage quoted before by others in order to explain what it’s like to grow up autistic and not knowing.  It’s still by far the best explanation of that feeling I’ve ever read.

For Autistics Speaking Day this year, I want to say something unequivocally.  And it’s incredibly rare that I feel qualified to just tell other people what they should do, but—if you are an autism parent—

Please tell your kids that they’re autistic.

Or have autism.  Or Asperger’s Syndrome.  Or are on the spectrum.  Whatever.  They can make their own choices about language preference later.

I don’t know your kid, so I don’t know when the right time or the right age is, or whether the best way is to have a talk and tell them all at once; or slowly, in trickles of information over time; or to simply always talk about it at home so they grow up always knowing.

However you tell them, just tell them the truth.  It’s worth it.

1. They already know that they’re different.  You can’t keep them from knowing they’re different by not telling them.

I knew when I was 3 years old.  I could tell things were harder for me than they were for other kids.  I could tell when I didn’t understand things that other people did (and when they couldn’t understand things that I did), that other people didn’t have as hard of a time explaining what they needed and getting it, that I didn’t know what I was supposed to do when other people expected me to, that I was expected to know things I’d never been told.  That I didn’t know how to dress, that I didn’t get invited to parties.  That things hurt my ears, that being touched felt wrong, that I was ignored by every single girl in my 5th-grade class except one for the entire year.

We have very good pattern recognition.  It’s very hard not to notice, actually, when every single description of the world you’re given…doesn’t quite match up with your perception.

And being told by adults that I was wrong, that I was imagining it, didn’t make me wrong about what was happening; it made me not trust adults.

2. They deserve to know.  They are entitled to accurate information about themselves.

If you had a kid who was gay or transgender, would you want or expect them to go the rest of their lives without the self-knowledge and self-acceptance involved in claiming those labels?  Or without the ability to seek out information, history, appropriate health care, emotional support, and community with others if they wanted it?  Why should those things be denied to an autistic kid?

(I wrote that and then realized that of course there are parents who would deny those things to an LGBTQ child.  But I hope you wouldn’t.)

That someone is autistic is information about their brain, about their body, about their life, and they are the rightful owners of that information.

Most people I know who either found out their diagnosis, or received a correct diagnosis as a teenager or adult, were relieved to have the knowledge, but resentful of their parents having kept it from them.  I know people who are glad not to have been diagnosed as a child—mostly because of the awful things it was considered acceptable to do to autistic kids when we were growing up, not because we didn’t crave the knowledge—but no one who was diagnosed and is thankful that the information was withheld.  Most people I’ve known have been relieved to know that it wasn’t just their fault that they couldn’t just be like everyone else.  To find out that there were other people with similar challenges who were okay.

3. Yes, labels can carry stigma.  But it’s the stigma that’s wrong, not the fact that a word exists to describe some facet of how your brain works.

Not knowing the word “autistic” will not make your child not autistic, and it will not protect them from the mistreatment that frequently follows being autistic.  I carried no label of a disability for most of my life, yet most of the same things happened to me as to people who did.

If what you really fear is that your child will be marginalized or mistreated for being autistic, then fight the marginalization, misinformation, bigotry, and dehumanizing stereotypes with us.

The burden of a stigmatized identity or disability label is difficult, but the burden of a void of missing knowledge about yourself, is much worse.

4. Knowing how to describe why things are harder for you is not “using it as an excuse.”

Knowing why certain things are hard for you (and other things are easier) is vital to good decision-making about how to use the resources of time, energy, and cognitive bandwidth that you have.  And also to constructive thinking about how to come up with workarounds and good strategies for things that you want to learn to do.

That I didn’t know and couldn’t tell anyone why things were so hard for me, did not make them less hard.  It did not make me magically able to just do things the way everyone else did.  It made me a lot more anxious, guilty, resentful, and frightened to ever put myself in a situation in which I didn’t know if I’d be able to do what was expected of me.

Being able to recognize what’s a productive use of your internal resources, and what isn’t, is a vital skill when you’re seeking to live sustainably with a disability or major cognitive difference.  Neurological boundaries don’t disappear because you lack the words to describe them.  Disregarding or pushing past those boundaries is a useful thing to be able to do sometimes, but having to do it constantly and relentlessly is no way to build a life.

5. Having community is pretty much the best thing.

There’s a lot about being autistic that most professionals, teachers, or therapists don’t know anything about.  Or even if they do, they can’t know what the internal, subjective experience is.  So practically the only way to get perspective or help from someone who knows exactly what you’re talking about, is to talk to other autistic people.  From certain sensory, cognitive, and emotional experiences; making self-care skills manageable; organizational strategies; making your habitat friendly and interdependent living; useful use of scripted language; overload, shutdowns; the reality of midlife breakdowns and loss of abilities later in life (because yes, this can happen at any time in our lives, not just early childhood); to differences in how we experience time, memory, sexuality and gender…to just being able to share obsessions and pleasures like cats and trains and things lined up in rows with mutual passion.  It is really, really good to be able to talk to other autistic people about things.

Sometimes it’s just nice to talk to someone who talks or thinks like you.

I also have autistic friends who aren’t part of the online/advocacy communities, and that’s fine.  Some people decide they don’t need or want that community in the same way, and that’s their decision to make.  But they can’t make an informed decision if they don’t have the relevant information.

6. They will figure it out anyway.

We have the internet, and because autistic people write about our lives all the time, in blogs and books and poetry and song, they will stumble across something that accurately describes what their life feels like in a way that nothing else ever has.

At somewhere between 1% and 2% of the population, we are everywhere, and they’ll meet one of us, and someone will tell them the truth.

We are characters in books, movies, plays, and popular television shows.  There are more and more chances that they will see themselves accurately represented, and put it together.

I had to figure it out myself (though not without help, but that’s another story).  It took me 28 years, and it consumed me utterly.  I could never get on with living my life in certain ways until I knew.  I will probably spend the rest of my life trying to describe, trying to tell the truth, about what exactly that lack of knowledge did to me.  I’m 31 now and I’m not even close.

Walking down the street and feeling like the world makes sense is a feeling I’m still getting used to.

Harder to express how that break becomes healed, a bone once fractured, now whole, but different from the bone never broken.  And harder still to follow the path between the two. (Eli Clare)

…and when they do figure it out, and realize that you knew and withheld the information, both of you will have to deal with that breach of trust.

I’m thankful, at least, that my parents genuinely didn’t know, that they were actually misinformed and clueless, that even if I still think they were somewhat in denial, they weren’t lying to me.  If they had been, and I had ever learned that they’d deliberately denied the information to me, I don’t know that I’d ever forgive them for that.

And while I’m as proud of this as anything I’ve ever done, it’s not something I would put someone through if I could help it.  You can help it.  There’s so much more of life to live than having to wrench the most basic facts about yourself out of the fabric of the universe.

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93 Comments »

  1. ischemgeek said,

    Yes, this.

    I wasn’t aware that I was different until around when most kids start middle school. I was aware that the other kids didn’t like me and that people tended to assume I was dishonest and so on and so forth, but I just didn’t make the leap from “Other kids don’t have this stuff happen to them!” to “Other kids don’t have this stuff happen to them because I’m different from them.” until middle schoolish.

    Maybe because I wasn’t too interested in other people until middle school (ish). Or maybe because the differences between me and the other kids weren’t big enough for kid-me to notice until then. Or something. I’m not sure.

    I do know this: I remember the exact day I added everything up and came to the conclusion that I was different. I’ll write about it some day. Just haven’t figured out the words to adequately articulate what it was like.

    I know something else, too: I remember the first character I ever read who I could relate to.

    • chavisory said,

      Yes, I think I really identified with a literary character before I ever identified with another real person…and it was Matilda. 🙂

      • ischemgeek said,

        Me, too! And it was Matilda for me, too! And then Tris and Alanna from Tamora Pierce’s books, and also Meg and Charles-Wallace from A Wrinkle in Time.

      • chavisory said,

        Yup, Charles Wallace, too. I’ve never read Pierce’s books, but starting to get the impression that I should.

      • ischemgeek said,

        Plot-wise, they’re fairly bog-standard fantasy stuff, seemingly influenced by the Celtic pantheon, and with a feminist bent to them. Upside: Unusual characters, and in the later books she makes serious effort to exhibit diversity of body types and include people with disabilities as actual characters with roles and crap (one character in the Circle of Magic has a brain injury, more than a few characters in several of her series exhibit signs of mental illness – Neal, Daine, and Rosethorn come to mind of the top of my head here and I haven’t read the books in a while so I’m sure I’m missing some, I read Tris as autistic and Alanna as having some sort of sensory issue or possibly autistic, and so on. Not all of her main characters are extroverted, either – Kel is fairly quiet by demeanor, even though she’s a leader, for example, which makes me happy. Downside: Some books don’t pass the Bechdel test, plots can be simplistic, and a few books come off culturally appropriative. Overall, they’re more good than bad, and a damn sight better than most fantasy fare aimed at preteens and young adults.

      • ischemgeek said,

        Sorry, I forgot to close my parenthesis in the previous comment. it’s supposed to go right after “and so on”.

  2. Christine said,

    Thank you for this. I intend to share it widely.

  3. Crista said,

    Thank you! My son is 9. And I often wonder what goes on in that brilliant mind of his and if he notices difference in himself and others. You have encouraged me to open up more to him! What a gift!

  4. A Quiet Week said,

    This is beautiful. Thank you and sharing wildly!

    Lori D.

  5. This is wonderful! As some one who did not get a diagnosis to a few months ago, at the age of 32 – I spent a whole lot of time blaming myself for why everything was wrong. I had no community until now and it’s one of the most amazing things that ever happened to me. I don’t feel bad or guilty about it anymore.

    • chavisory said,

      Yup…my memories of my whole childhood feel washed clean of shame for everything that I just got blamed for, rather than anyone considering I was actually having trouble.

      This community is full of the greatest people. ❤ It's really strange to look back on my life before without it.

  6. Alicia said,

    I completely agree and told my dear little boy recently (he’s five). He asked, I told. I see it as the beginning of a lifelong conversation. Here’s what I wrote about the experience (from my perspective): http://www.autismspectrumconnection.com/blogs/spotlightblog/mommy_do_i_have_autism_a_conversation_with_my_child

  7. Debbie said,

    We’ve always just talked openly about it around our son just like we did with our older kids who were adopted. We figured that trying to find an age when they would understand or we felt comfortable sharing the information might be hard, so we decided that we would always talk about it freely even when they were too young to understand, but it would be a part of what they had always heard and known. It would just be a part of who they were – their story of life.

  8. Hannah said,

    AMEN! x

    • chavisory said,

      Hey, long time no see! I need to come catch up on your blog. 🙂

  9. auntyjack said,

    Very well said. This is my experience too. One of the aspects of autism that few people seem to think about his the manner in which non autistic children learn the skills they need to live successfully in communities. They learn from role models. These role models simply do not work for us. Autistic children need autistic role models and mentors who can help them make their way in the world using their autistic characteristics. To know is a right, just as it is widely accepted that adopted children have a right to know, even before they can understand. To deny knowledge of the diagnosis is abuse.

  10. […] recently read an article written by an adult with autism about the importance of parents talking to their child about […]

  11. Aaron said,

    Reblogged this on 101 Ways to Make Friends.

  12. PK said,

    Reblogged this on Walkin' on the edge and commented:
    Knowledge is power.

  13. PK said,

    Thank you for this. My son is 6.5 and in first grade. He seems to have some friends in school, but I do see that he is different in many ways. As a student he seems to be advance, but as a kid he seems a bit less mature. He’s a rough and tumble boy, but he’s not as aggressive as other boys his age. His general emotional state is contentment/happy, but when he feels sadness it’s a quick drop to full out sad-not much transition at all. That in itself will make things difficult for him with other boys his age, and I’m not sure how to help him “get a handle” on it, if it’s possible. I just want him to have a strong sense of self so he can be comfy in his quirky. We haven’t talked about it directly yet, but I’m ready when he asks. I just wonder if I should bring up sometimes.

    • chavisory said,

      A lot of things just take more time for us. That might be a good way to start talking about it, if he’s impatient or frustrated that other kids seem older than him? We just work and grow up differently, so a lot of things get easier later for us than they do for other kids. (I so did not have a handle on things when I was 6….)

      I love the book “All Cats Have Asperger’s Syndrome” for kids (people, really) of all ages. It’s adorable and comforting, and phrases what some of our common emotional difficulties are really clearly and objectively in a non-shaming way.

      “A Wrinkle in Time” is also great; a lot of people think the character Charles Wallace is autistic–he’s a brilliant kid who doesn’t fit in with anyone his age.

      • PK said,

        Thanks! I was wondering, as he’s not diagnosed as aspergers, if it would be helpful or confusing. I’ll have to check that out. He likes Harry Potter as well – another “not fitting in” kid 🙂

      • chavisory said,

        Yeah, love Harry Potter. But the character I identified most with in that was Professor Lupin.

        There’s also a great old Ray Bradbury story called “The Homecoming,” featuring a kid who’s the only non-vampire in a family of vampires. Er…maybe for when he’s older on that one. 😉

  14. Anonymous said,

    We Talk openly to and around our son Mycael about Autism, he is well aware he has issues that other kids don’t have, he is also aware that there are kids worse off then him, and hes aware that he goes to therapy for those issues, hes 5 now and was diagnose a little over 2 years ago! Making sure he was self aware was a no brainer for us!!

  15. dennis said,

    We Talk openly to and around our son Mycael about Autism, he is well aware he has issues that other kids don’t have, he is also aware that there are kids worse off then him, and hes aware that he goes to therapy for those issues, hes 5 now and was diagnose a little over 2 years ago! Making sure he was self aware was a no brainer for us!!

  16. jillsmo said,

    I’ve always loved the way you phrase things, it makes everything so obvious, for lack of a better word. It’s funny that you wrote this post because you are the person I would ask for advice on this issue.

    I agree with all of your points 100%, however as a parent of an autistic child who has not yet had this talk, here is my issue: It hasn’t come up. I’m serious, the topic has never been mentioned in my house, and his expressive language skills are developed enough that he does have the ability to ask questions about it; he just hasn’t. And I’ve tried to get started, probably pretty lamely, but it’s always been a dead end. And I don’t know how to bring it up without it seeming like “Son, please sit down, I’d like to tell you about what’s wrong with you,” because obviously that’s not what I want to do.

    You told me once that when the time is right I would know that he was ready. He already knows he’s different and when he has questions about that, he will ask me. And while he’s verbal enough to be able to express these questions, he just hasn’t. And so I sit here, one of those parents who hasn’t talked to him about his diagnoses, and I feel like I’m hiding something from him when that’s the last thing I want to do, but I just don’t know HOW. Not how do I HAVE the conversation, because I’m ready for that, but how do I START the conversation. Do I just keep waiting? I kind of thought that once he started middle school he might want to talk about it, but so far that has not been the case.

    And so I wait. And frankly it’s a huge load on my mind, all the time. I want him to know. But so far he doesn’t seem to care; it’s not a huge load on his mind. And if it was, I would know, because I know him…. really well. And I remember your words about how he knows that he’s different, and while I’m sure you’re right, from my perspective it doesn’t seem like he cares all that much. So what do I do?

    You don’t actually have to answer that, I’m just typing stuff here 😉

    • chavisory said,

      So…there’s a possibility that’s been nagging at the back of my mind about Child 1 for a while…

      I think it’s *possible* that he does know. It *could* be why he doesn’t seem to care…that he does know and he’s fine with it, or doesn’t see it as an issue right now.

      Rachel commented once that her impression of Child 1 is that he could be way more clued in than he appears, so…that’s a possibility.

      Which isn’t a reason not to have the conversation…just that I suspect it doesn’t need to be a big hairy deal….

    • Karla T said,

      I can’t tell you the best way for you. But we sat down with our son and basically said… You know how some things are really hard for you (examples)? That’s because you have Aspergers. It means that your brain works in a unique way. It makes some things hard for you and also makes you really good at other things (examples). There are lots of people who have it too even some famous people. And I offered to answer any questions he had and offered him some books (e.g., Freaks Geeks and Aspergers) too.

      I know he appreciates knowing what’s going on and it has helped him realize that he may need certain strategies to deal with things. The funniest part was when I showed him the books a while later in the day he exclaimed in surprise and relief “oh THAT’s how you spell it.” He was thinking it was ass-burgers. 😀

      Everybody’s journey is different. Hugs!

    • I’d say don’t dump a big exposition on him unless he asks a question. Instead, just casually say that he’s autistic, and mention if he meets other autistic people that they’re autistic (assuming you’re allowed to share that information).

  17. Thank you SO MUCH for this. As an , adopted trans guy with Aspergers who didn’t know Aspergers existed until I was about 43 your analogy was so accurate! My parents didn’t hide anything from me, in 1970’s in Australia I went through numerous psychiatrists and psychologists trying to work out what was ‘wrong’ with me (after having been bullied unmercifully through my entire primary school life), the diagnosis just didn’t exist back then, although I read “For the love of Anne, which my speech teacher lent me, I think she suspected, as well as my lessons with her she lent me just about every book about adoption, disability etc that she owned, she was a wonderful lady.

    I now have 2 grandkids so far diagnosed on the spectrum, and I am so pleased that life will be much easier for them, because at least they and their parents know what the difficulties will likely be, and they aren’t just being thrown in the deep end.

    Once again, THANK YOU. I found this through my older daughter who linked to it on Facebook. Bless you for such a powerful piece of writing.
    Simon

  18. earthma said,

    Yes I agree, I have always been honest about the journey we are on and make it plain that there is no illness or terrible problem but
    Just that certain things are more challenging and need support..honesty is the best policy

  19. Yes! and now one of my dearest friends at 35 is beginning to understand his autism… as well as his OCD, Tourette’s, and sexual orientation without shame. And he now explains his actions to others that he meets, to his family, and to his housemates… using all of those terms….

  20. Bekah said,

    I came across your blog from a woman I follow on FB who shared it on her page (diary of a mom). I am raising 3 little boys. Twins that are almost 4, and an 18 month old. We found out at age 2.5 that one of our sons has autism, he’ll be 4 next month. He’s amazing, funny, smart, and kind. I want to do right by him, give him every opportunity to suceed and be happy. Thank you for sharing your thoughts and feelings. It truly gives me clairity, courage and hope. I wish you every blessing and happiness!

  21. Thank you for this wonderful article. My parents didn’t know. I kind of feel that they should have “noticed”, but more and more I’m pretty sure they’re on the spectrum too, and couldn’t see how different we were. What they did for us was awesome, though: they made us believe that our differences were wonderful and unique, and made us specially equipped to face whatever life handed us. It made all the difference to have that attitude to come home to each day, and we’re making sure our kids have that, too.

  22. […] Chavisory has a similar post that is good and should also be required reading on this […]

  23. PK said,

    Hi Chavisory 🙂 I’ve had casual conversations over the last few months about differences when that kind of thing comes up, but haven’t put a name on it yet. Over the last several weeks, though, my son has specifically said “I’m different than other kids”. He has a hard time articulating things, but I think it’s based around how he responds to things/gets upset about things (he was called a crybaby at aftercare). I talked to him in a general way about the “hairdryer brain/toaster brain” post from momnos’s blog, and he liked that. I also have “I love my own autistic self” on kindle, but I’m not sure if some of that’s too “heavy” to get into or not.

    Also – my hubby (who probably has a toe in the autism pool) doesn’t often see our son in group social situations. At home, he’s just a sensory seeker, so hubby sees him more as “quirky”, and that his autism isn’t that much of a roadblock (we have extended family that have more significant challenges, and our son’s are extremely minor in comparison). Do you have suggestions on how to talk to a parent that doesn’t really SEE the challenges in the same light, and might not feel right about disclosure? Sorry for the heavy question!

    • chavisory said,

      Hi PK–no problem on the heavy question! 🙂

      Would it be possible to explain to your husband something along the lines of…that just because his challenges may not be behaviorally apparent, doesn’t mean that there aren’t *major* processing differences happening under the surface?

      I think it can also be the case, especially if a kid is eager-to-please, that they may be working very hard to meet the demands of their environment, making their deficits appear smaller than they really are. Like, I *can* do most of what non-autistic people can, but it takes me a disproportionate amount of energy and concentration. And like a lot of little girls, I tended more towards internalizing problems than externalizing them in big ways.

      Have you seen this post from autisticook this week?

      http://autisticook.wordpress.com/2014/03/06/when-i-was-just-a-little-girl/

      • PK said,

        Love autisticook – we’re bloggy friends. 🙂 She was one of my blog’s first readers. And I think that my husband’s “normal” is my son’s “normal” – you’re right! Thanks. Maybe over spring break I can work it into conversation and plant the seeds for hubby. I asked the school to give me some examples of the challenges that we DON’T see, considering we’re his “normal” and school isn’t… if that makes sense.

        Totally unrelated – my DS is a sensory seeker, and he’s often standing and moving around a lot in school. His teacher is very understanding (we are SOOOO lucky there). I asked the school about a sensory cushion for his chair – he got it last week and the teacher said he didn’t get out of his chair during lesson time for the entire week. Don’t know exactly how it helped him regulate, but somehow it was soothing 🙂 Very cool!

  24. Patricia said,

    Reblogged this on Spectrum Perspectives and commented:
    Knowledge is power.

  25. […] to the point, and yes, I do have one. Last year, I stumbled across a post quite by accident that became a part of me. It just did. I find myself mentally referring to it […]

  26. Deb said,

    My son is 6 years old. We, as a family, have never tried NOT to use the word “autism.” It’s a part of our lives, our home, our identity. But we never TOLD him. One afternoon recently he & I were reading a book about different disabilities. After each section I’d ask, “do you know anyone who has…?” Because his school is highly inclusive, he knew someone for each disability. When we got to Autism I asked the question, to which he answered, “Yeah! ME!” And that’s it! He owns it, no stigma, no whispering, no beating around the bush. He knows he has autism and he’s just fine with that!

  27. Lyn said,

    Thank you for the topic and ensuring discussion. I’m learning to ask the right questions so I can truly understand.

  28. Towanda said,

    Wonderful post! There are many things which I identify with in this article. Like you, I knew I was different from a young age. However, my parents only told me when they were pretty much forced to at 15. Although they downplay the whole thing, finding out my difference had a name was great. All of your advice is spot on, and I am glad it is out there!

  29. Anonymous said,

    We started talking to our son–who is more significantly impaired–when he could understand, about 11. His siblings have struggled as well–people think because their older brother has autism they have problems too. Its gotten better since we moved from a small town to more anonymous city–our kids have a chance to stand on their own merits. Understanding disability community and loving our own guy with and despite his struggles demands a high emotional price for the whole family. It makes us all better. But it can be a tough row to hoe.

  30. Janna D said,

    Thank u SO MUCH for this article. I recently watched a documentary of a school in the U.K. for children with autism and asperger’s and one thing that struck me was how one of the therapists was having a talk with one of the children about some aggressive behavior she was displaying. She said “Well you know the reason you are having trouble understanding why this is not ok is because of your autism….” And it was like bells and whistles went off in my head! I thought: that’s brilliant! I should TELL my daughter she has autism and that will help to explain to her why certain things about interaction and communication are hard for her to understand! But then I chickened out. I thought maybe I shouldn’t jump the gun and tell her without talking to one of her teachers or therapists first….but reading your article has solidified the fact in my mind that I need to TELL HER about her autism!! Thank you again for sharing. This article is a gem.

  31. Sara said,

    Someone in my sons school told he has autism. He asked me what it was and I
    Told him that sometimes things you like are easier of you to understand. Some other things you have to work harder to understand. Different is good. Be different.

  32. Patricia said,

    I shared this link on a linkedin discussion about resources for disclosing, and the response from the social worker who asked the question was:

    “Thank you for sharing the blog, it provides a rich and powerful perspective.

    “That someone is autistic is information about their brain, about their body, about their life, and they are the rightful owners of that information.”

    I am always trying to convince families to be open with their children about their challenges and special talents and strengths, but having a personal account such as that one holds much more power than my professional opinion. “

  33. Michelle said,

    As a sped teacher, I can absolutely agree with this. I get so many kids, with a variety of challenges, who have only one label for themselves… the wrong label…. that they’ve assigned themselves because they don’t know WHY school is so hard for them. Most of my students have normal intelligence, or even have scored in bright ranges, and come to me thinking of themselves as stupid. Or bad. Or just plain wrong. Being able to say “I am different because I am ________,” combined with talking about how being different makes the world both a more difficult, and a more wonderful place, changes their attitude to “I am me, this is my challenge, these are my strengths, and I am going to do wonderful things.” Telling your child there’s nothing wrong with them, when they have every understanding that no matter how hard they try they are told they failed, is one of the most hurtful things anyone can every say to them.

  34. I have two autistic sons, now 19 and 12. When my youngest, Patrick, was two and a half and heavily into the “lining thing up” phase, my oldest, Joseph, then nine, came stomping into the kitchen and said, “Patrick is lining up everybody’s shoes.” “Uh-huh.” I said. (Remember, this was my second time at this rodeo. If nobody is bleeding and nothing’s on fire, I don’t get real worked up.) “Well, why does he always line things up?” “Well, why do you like to spin things around your fingers?” Joseph’s frown cleared. “Patrick has autism TOO?” “Yep.” Delighted, Joseph ran to the living room and pulled Patrick into a ring-around-the-rosy dance. “Patrick! You’re autistic like me!!!!” Oh, it was quite the little party.

    • chavisory said,

      “If nobody is bleeding and nothing’s on fire, I don’t get real worked up.”

      That’s my approach to things generally. : )

  35. Ais said,

    Great post. Agree.

    We started having gentle conversations with our Aspie son soon after he got his diagnosis aged 5 yrs. Aged 6/7, he started asking a lot of questions and we were always honest in an age appropriate way.

    Sometimes it was nerve wracking and we felt anxious about getting the right balance between empowering him and making him feel alienated and ‘too different’. But we tried to put ourselves in his shoes, ploughed on with being open (very much led by him). and it has paid off.

    He is 9 yrs old now and has a good understanding of autism and is still asking questions, seeking answers and talking about autism openly and with no shame. That can only be a good thing. Why should autism be a secret or something shameful?

    Building networks with other autism families has also helped enormously. Our son feels less isolated and can talk about autism with other kids – or just be silent but comfortable in the presence of other kids with shared or similar ways of experiencing the world.

    Being open about autism with our son has also helped us as a family in myriad ways. We are more open about everything – about all of our issues and different characteristics. We all have our strengths and weaknesses, things we excel at and things we find difficult. Its about recognizing our strengths, bring open about our difficulties, and not letting our weaknesses define us as human beings, in my opinion.

  36. rheeallen said,

    We have always talked about autism infront of and with our 8 yr old autistic son. I didn’t want to sit him down for “the talk” because I remember the talk when my parents told me what was “wrong with me” as a child. It was a relief to understand but the anger of all the years of not knowing and being blamed for behaviours beyond my control. There was also the sense that I was damaged or broken which was very shaming. I wanted liam to always know he was autistic to avoid those negative feelings. I should say here that my parents told me about my ADD diagnosis as soon as I got it. So the way I felt wasn’t their fault. They did the best they could with significantly less resources than are available today.

    Because of my experiences we chose to just always talk to him and our six year old NT son openly and honestly when they have questions or if a related issue occurs. I have always coached it in phrases that focus on natural tendencies (what we are naturaly good at or struggle with and how those areas of skill or struggle are based on our neurological make up).

    I wanted Liam to be absolutely fine with who he is even though his neurology makes accomodations neccesary sometimes. AND I’m thrilled to say he proved he’s handling the knowledge just fine (another argument I’ve heard for not telling them, that they aren’t emotionaly mature enough to handle knowing, pshaw that is hogwash). His teacher recently asked me if i would be ok with telling liam’s class about his diagnosis. When i brought up the idea, liam was completely excited about telling them. he wanted to tell them about ASD and share that the creator of pokeman has the diagnosis too.

    Any doubts I had about our decision disapeared in that moment.

    • chavisory said,

      “AND I’m thrilled to say he proved he’s handling the knowledge just fine (another argument I’ve heard for not telling them, that they aren’t emotionaly mature enough to handle knowing, pshaw that is hogwash).”

      Yep. I mean, we’re already dealing with the reality of it every hour of every day. And we handle that.

  37. The eldest of my two autistic sons knew from being 3 years old that he was different. His word not mine. His diagnosis did not come until he was 13 and it was a relief to him. Again his words not mine. My youngest son got very cross at a specialist drama group he was attending for children with autism when he realised that half of the children attending had not been told that they were autistic. He summed it up perfectly when he said that the diagnosis did not belong to the parents, it belongs to the child. Parents do no have the right imo to hold on to a diagnosis that is not their’s.

    • chavisory said,

      “My youngest son got very cross at a specialist drama group he was attending for children with autism when he realised that half of the children attending had not been told that they were autistic.”

      Good for him. 🙂

      But seriously….I don’t know if any of the parents of kids who haven’t been told are reading…this is a reason to tell them yourself. Because unless you plan to completely isolate them from other autistic kids, they’re likely to get asked by another kid. Or to realize the similarities between themselves and another autistic kid.

      Some parents DO actually try to isolate kids from other autistic kids, and I think that’s a sad and horrible thing to do. But even if you do that? Other non-autistic kids have autistic siblings and cousins and parents and friends.

      They *will* hear about it. The question is whether you want them to hear it from you, or whether you want them to flounder until they hear it by chance somewhere else. But that they’ll just think they’re normal unless you tell them, is probably not going to be what happens.

  38. Amanda Wynn said,

    So much I relate to and applaud in this. Thanks for sharing.

  39. thesoupdragonsays said,

    Thank you for your piece, I stumbled across it in the search for information. We are only starting our journey, and while I suspect that my son is on the scale it is scary that the more I read the more I realise I think I am too!

    • chavisory said,

      That’s a very, very common experience for parents–I know at least a couple of other parents who realized they were autistic as well only when they started to understand a child’s diagnosis!

  40. […] naive at best (and done her an outrageous disservice at worst). She knew what was hard for her. Every kid knows what’s hard for them. So it wasn’t up to us to protect her from the process, it was up to us to make the process […]

  41. Reblogged this on Rambling Justice.

  42. Cheryl said,

    I don’t have a child with autism, although I have several friends that do. What I can say is I have a grandchild that’s transgender. The best thing we can do is to support them and let them know that they are perfect and beautiful just the way they are. I tell her, God does not make mistakes. As I heard one autistic young man say, he’s different, aren’t we all? What kind of world would we live in if we were all the same?

  43. Excellent article, thank you so much for writing. As an advocate for disclosure to achieve understanding, acceptance and celebration of people with autism, this is one of the best articles explaining reasons for disclosure that I have come across.

  44. Jay R said,

    Dear chavisory,
    Thank you for this wonderful piece! It is so well written. I’m hoping you or someone else who reads this can help me. So I ask your patience as I share of my story. I hope what I provide us relevant.

    My son is now 15. He has virtually no expressive language. I would guesstimate that “academically” he is about 8. We noticed an issue as early as 18 months old. It took until he was over 3 until we got an official diagnosis.

    For a long time, as Dad, my role was to earn money and I needed to let his Mom do the research and learn about autism, decide on therapies, etc… I would simply trust what she recommended and do my best to support my son and participate in this as time allowed.

    Then I learned that I have bipolar disorder. Then his Mom and I were divorced. Then I needed to move out of state to live with a cousin and work. Then I was able to move back close to him. Then I decided it was too much for me to work and applied, and eventually received social security disability.

    So now, I have joint custody, and based on another LONG story, we are trying to home-school. It’s no longer good enough for me to try and follow his Mom’s lead. I need to know and learn things for myself, so that I can be a good teacher, and a better dad and caregiver…

    The point in your article that really struck me was how good it feels for you to be able to join in the autism community and share with others like you. Do you, or anyone, have suggestions on how to help my son experience that feeling of community when he doesn’t have the expressive language skills? He can talk and sing and repeat, but he really can only answer yes/no, our multiple choice questions, and even then he might not be able to tell someone else an accurate answer.

    Also, I’m finding that many opportunities for classes or activities are either for younger kids, our those with more language skills.

    Any ideas are greatly appreciated! And again, thank you for a wonderfully written article that provides great insight for those of us trying to understand, support, help and love individuals with ASD.

    • chavisory said,

      Hi Jay!

      I’m curious–has your son ever been taught AAC at all? AAC is assistive/augmentative communication. AAC can be using a keyboard to type, or an iPad app for choosing words, or a device that converts text or pictures to speech. American Sign Language might also be an option?

      If he has a speech and language pathologist, that might be a person to ask about AAC possibilities. I could also see if I can get you contact info for some people who know more about AAC or whose kids use it if you want.

  45. Reblogged this on The Unabashed Autist.

  46. Adriana said,

    Hi!
    Thank you so much for sharing your thoughts with us. I knew my gorgeous boy was ‘different’ from the age he was two. I didn’t know exactly what it was because I didn’t even know about the condition, but I knew that his behaviour reminded me of ‘Rain Man’. It took me two years to get him diagnosed but when I finally did I started trying to learn about Aspergers. I didn’t tell him straight away because I didn’t think he’d understand. But when he was five, I started trickling in information to him… telling him and his siblings that he thinks differently to everyone, but it’s okay and telling his siblings that they have to explain things to him about playing with other kids and stuff. In reality, I wasn’t sure how else to tell a small child about this condition. I myself found it hard to understand because it is very complex. By now, I have already told him he has Aspergers. But now he is nine, I am actually going to have a chat with him to try and explain it. I’ve got a book he can read (he understands things better that way). But what do I tell him Aspergers is? It’s not a disease or an illness, it’s a disability right? So do I tell him it’s a disability? What should I say? Help me please…

  47. Jill said,

    Thank you for taking the time to write this. As a parent of an autistic teenage girl I agree with your points of view. Telling my daughter that she has been diagnosed was difficult only in terms of her interpreting it to mean that she has failed some test or other, but it at least helps her gather some understanding that sometimes others perceive the world in a different way than she might. I wish she had support from other people with ASD, I think it would help her to be able to share common ground in this respect with others. However online isn’t for her at the moment – she’s still working out the rules of engagement safely online – and locally there are no groups etc she could access. I hope we will figure out ways and means of connecting with others in time though. In the meantime the most important thing to me is that we work towards providing a home where she feels safe and secure and she learns and understands that regardless of differences processing or understanding, she’s an amazing being, with outlooks and attitudes which most of us NT folk should learn to embrace !

  48. […] have included on your handout a link to a blog post called “You should tell your kids that they’re autistic,” written by an autistic adult. If you are struggling with this, I highly recommend you read it, […]

  49. Thank-you for your article. I was able to locate it from Stimeyland’s site. I am a parent of an amazingly beautiful 7yo ‘mildly’ autistic child who also has a mixed language disorder, and have been pondering the way to go about disclosure for some time. I am so deeply grateful that both your articles are reassuring me that now is the right time to tell my child. I was hoping to not have to do it so soon, but the anxiety and tears on a Sunday night before going back to school on Mondays recently has led me to understanding that now is the right time to start our ongoing conversation and journey of self-discovery. Your advice is the best I’ve come across- so a massive thank-you from all of us.

  50. Becky said,

    My son is 8. He knows he’s autistic, and has since the beginning. We’ve never hidden it from him. But he never wants to talk about it. At all. Ever. Should I force the issue? Or just let him be?

    • chavisory said,

      I would probably just let it be. Make sure that information is available. But it can be a hard thing to talk about. He might not have the words. It might be too emotional. It’s a hard age to be different. He may want to later, or he may want to never, but it’s his right to decide either way.

  51. umisinha said,

    What if you’re not sure your child is autistic? There is a range of behaviour in children and sometimes it can be down to something else – being adopted for instance. My nephew who’s five may have Aspergers but his problem with engaging could be down to having had a lot of loss in his life – birth parents, foster parents then two grandparents within 6 months. Might it be better to wait and see rather than labelling him prematurely?

    • chavisory said,

      Well, obviously you want to avoid a child being misdiagnosed. I think obviously you don’t tell a child he’s autistic if you honestly don’t know yet, but… what about keeping him involved and informed of what’s going on at a level he can keep up with? That he’s doing a lot of tests and games in order to find out more about how he learns and how his brain works, for instance.

      Even if you don’t know for sure if he’s autistic, I don’t think it’s too early to introduce the concept of neurodiversity–that everyone’s brain works differently, and that’s okay. He might be autistic, or he might be different in other ways, but whatever turns out to be true is okay.

      I have a friend who is not autistic, but she was adopted and has had a lot of loss and chaos in her life, too. We have a lot of things in common. They might not be for the same reasons, but we have a lot of similar sensory and emotional processing differences. Finding solidarity and useful ways to think about and cope with those things doesn’t necessarily depend on us sharing a diagnosis.

      The autistic community used to have a stronger concept of something called autistic cousin-hood, which describes how people with a whole range of disabilities can have neurological traits in common, and that sometimes similar lived experiences between people are more important than what specific label someone has wound up with.

      So…if he does turn out to be autistic, I think it’s important that he knows that. But if he doesn’t, or if it remains uncertain for a while longer, there are multiple options for how he might learn how to describe his differences (cousin-y, neurodivergent, brain-weird, or if he winds up with another diagnosis like ADHD) and find a community, and I think it’s important he knows those, too.

      He doesn’t have to have final answers when he’s five. But yes, I think it’s important that he have access to relevant information about himself, to the greatest extent possible.

      • umisinha said,

        Thanks. I wasn’t arguing, merely enquiring. It’s a real dilemma because school is putting pressure on for a diagnosis and family’s instincts are he needs some time for things to settle as development speeds are so different. But his mum is very good about talking about things with him, so I’m sure they will deal with it well.

      • chavisory said,

        I think that may be something they need to consult an educational lawyer about. The school doesn’t have a right to demand a particular diagnosis.

        If a kid’s life is in the process of stabilizing…I agree that a diagnosis might not matter as much *right this minute* than getting their life more stable, and a lot of the same things are going to be important whether he’s autistic or not.

        But also…a lot of traits of autism can be much more apparent when someone’s under stress and fly under the radar a bit when they’re not. So…certain things could be just because of the stress of upheaval…but they could be because of the stress AND that he’s autistic.

      • umisinha said,

        THanks, that’s very helpful.

  52. I asked my father as a child what was going on, and he said somebody “thought I had autism.” My mother told me right away once she knew I could understand. My father’s denial continued until his death. That rejection still shakes me. I’m 39 by the way.

  53. […] Chavisory’s Notebook, a piece that has come up again and again in various groups I belong to: “You Should Tell Your Kids That They’re Autistic.” It’s a really good brief piece about why it’s so important for kids to know more about […]

  54. […] Since I posted this, I found this article, which gives a very strong case for telling your children about their autism. https://chavisory.wordpress.com/2013/11/01/you-should-tell-your-kids-that-theyre-autistic/ […]

  55. Momof2 said,

    I read this awhile after my daughter was officially diagnosed with ASD in 2014 at the age of 18. And any questions in my mind were put at ease, as I was the one who suspected this was what was going on as she went through high school. She was then officially diagnosed and they couldn’t believe it was missed when she was younger. My lovely daughter was misdiagnosed as a young child as many girls I know are. She has been very, very relieved to finally know. Thank you!

  56. […] Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think […]

  57. Reblogged this on autisticagainstantivaxxers.

  58. I hope this thread is still live—
    Is there a good way to tell a child WHY he must take his prescription?
    I’m the grandma. He tells me he hates taking it because his parents are “making me take it because they hate my autism.” In other words, they’ve never told him WHY he needs it, only that if he doesn’t he’s “too annoying.” Really. I can believe they’ve said this to him.

    I’ve tried to explain why in gentle terms, but not really confident. Anyone have any advice?

    • chavisory said,

      Hi Kay,

      Not only am I not a doctor and not qualified to give medical advice, only to speak from personal experience and relay the experiences of some people I know…it is very hard for me to give any guidance here without knowing what the medication is and why *does* he have to take it?

      There are many medications that some autistic people find helpful for some purposes. There are also medications that many of us have found harmful, or just not useful at all, or ultimately not worth their risks.

      If your grandson is being given a medication as a behavioral restraint, that is wrong. If there is another reason that his parents just aren’t telling him, I would really urge them to talk with him calmly and honestly about it. And if he, himself, doesn’t like how the medication makes him feel, then that really, really needs to be addressed with his doctor.


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