There are so many things that inform my parenting. None, of course, more than my study of my children and my deep and abiding love for them along with the conviction that if my Mama gut is telling me something, I should likely listen.
But when you parent a child who, in some fundamental way, experiences the world differently from the way that you do, there’s another step — seeking out those whose experiences more closely mirror hers and learning from them.
Over the years, we’ve talked to a lot of ‘experts,’ many of whom have had some pretty fancy sounding titles and some really impressive degrees. None of them, not a single one, has given us more insight into our daughter and how to respectfully parent her than autistic people. Because while many of those experts can do a bang up job describing what it looks like to be autistic, none of them can tell us what it feels like to be autistic, and that is what I need to know if I’m going to parent my child from a place of compassion rather than just observation.
I need to know what hurts and what helps, not to make her look and act more like me, but to get her to feel comfortable in her own skin — happy, healthy, delighted by who she is and in control of her own destiny to whatever degree possible. Which is, not incidentally, precisely what I want for my neurotypical child as well.
And so I search and scour the Interwebz and I hoard autistic-written blogs and books and essays and then I make an effort to get to know some of the people who write them – speaking, non-speaking and every possible variation in between. Because without them, all I’ve got is the view from the outside in and that’s not enough. (Not to mention that they make for damn good role models for my kid AND that they add so much to my life and selfishly, I just kind of love that so many of those writers are now my friends.)
Anyway, 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 constantly. Holding it in my pocket like a smooth stone, reaching for it and rubbing my fingers over its surface in the moments when I feel lost, finding comfort in the unyielding solidity of its conviction in a world in which it’s so easy to live in a place of constant doubt.
This post has become my rock in the middle of that uncertainty, and I am honored and grateful that its author, who writes at Chavisory’s Notebook, has agreed to share it here on Diary.
Chavisory describes herself as an autistic woman in her thirties. She lives in New York City and works in stage management and volunteers with the Autism Women and Non-Binary Network. These are her words.
You Should Tell Your Kids That They’re Autistic
Originally Published on Chavisory’s Notebook, November 2013, reposted here with her generous permission.
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.
Yes. Yes. Yes. Yes. Yes.
These are the reasons that we talked about it with my son(s).
And this part: “it’s the stigma that is wrong”? That’s it exactly isn’t it? My fear was not in him knowing but in the world thinking differently of him. But to fight the stigma and help others understand we had to not be afraid of the stigma ourselves, and help him teach others the same.
Our guys are very young, and they can’t yet communicate how much they know, so our conversations so far are pretty one sided when it comes to telling them about their autism. I talk to them about it after they are having a hard time with something- I want them to understand that their challenges don’t mean that they’re wrong, but that they’re different. I also discuss it whenever I mess up- after all, empathy goes both ways, and when I don’t allow my kids the extra time they need, I explain to them that I’m not autistic, and I messed up because I didn’t take the time to understand. I also make sure when they do something extraordinary (which is basically every day), their autism is helping them do that- be it intricate patterns with blocks, or sitting with a book for hours, or figuring out how to get past my barriers and get to the cookies… Autism contributes to their strengths and weaknesses, and I want them to recognize their gifts and be proud of who they are. It’s not easy living in a home with two neurologies, but I want them to be proud of who they are and able to self advocate, which they most certainly can’t do without knowing they’re autistic.
I was 40 when I discovered I was on the spectrum and it was like a massive weight had been lifted from my shoulders…all of a sudden the world made sense. I was okay, and not some ‘screwed up individual’ I had been told over and over again through out my life. I’m okay and I’m sooo glad I know now!
Both my girls 8 and 9 are also high functioning and on the spectrum. They both know, and are proud of who they are and what makes them special. They were studying disabilities at school last year and my eldest wanted to tell her class. We discussed it a lot. I was happy if she was happy. She told me she was happy to tell them but she was “a bit worried, everyone might think she was boasting”. My heart swelled and tears filled my eyes.
I’m doing a good job, I get my kids, they are proud and confident in who they are..,,isn’t that all any parent wants for their children whether on the spectrum or not?
I totally agree with everything that this amazing woman recommends and all the reasons she states for the recommendations. Kudos to her and to you for finding her and following her recommendations and passing them on..
This is a great piece. Thank you for sharing! We talk openly about our son’s autism with him and his brothers. Our autistic son doesn’t ask many questions, yet, but when he’s ready, I want him to know he can be open with us. I never want him to think we are ashamed of his neurology.
I completely agree! My children grew up knowing, before they could understand, I spoke of it, much in the same way they grew up with faith, it was a part of our lives, of their lives, never hidden, never feared.
Some children grow into the knowledge they are adopted, my children grew into the knowledge they were autistic. There was never a sit down moment, our lives have been a series of moments and opportunities.
I think this is why they have never had any doubts about who they are, they accept themselves wholly . . .
I would like your opinion on whether parents should inform people as they go places that their child is autistic (or has autism). My son is non-verbal, moderately autistic and we practice communicating to buy things. Also, when he has meltdowns, it is easier to simple comment “He has autism” than to accept judgmental looks from strangers. But, I don’t know if this is harming him to hear himself labeled in a way as different. Since you were not raised with the knowledge of autism, perhaps you do not have a frame of reference. But your thoughts would still be appreciated. Thank you.
Yeah, it is a hard thing that I don’t have the frame of reference of childhood experience for… Probably I would stay away from telling people pre-emptively that he’s on the spectrum. If they don’t have a reason to need to know, it’s none of their business. (People like doctors and teachers and anyone else responsible for him in some way obviously need to know; other random people probably don’t.) If there’s some kind of immediate reason to tell someone, like he’s having a meltdown, I’d probably just do it as discretely as possible.
Thank you. I appreciate the insight. I think my parenting skills can always use a tune-up.
Absolutely. My kid has known since he was five that he’s autistic and he has a lot of pride in it. I admire that a tremendous amount about him. I’m also grateful that he has that self-knowledge about himself from the start–something I waited decades for.
Hell YES! It has been a part of our vocabulary since he was little. We took our wonderful psychologist’s advice and explained it in depth (or rather, took him to another wonderful psych who explained it in an incredibly positive way) when he wanted to know more. He was 8.
He is now 16. He mentors younger children on the spectrum, tells them of the strengths they have, how to face the struggles and more importantly, to embrace who they are.
We love him so very much for exactly who he is just as every other parent loves their child.
I love reading all these comments…..your kiddos are all so lucky to have you all as parents!
Yes! If you know, tell your children!
I had lived five decades before I began to figure out that I was on the autism spectrum. Five decades of self-doubt, guilt, embarrassment, and anxiety because I was different. I believe my “coping” strategies also caused or worsened depression, anorexia, and other problems. The difficulties and differences haven’t gone away, but the knowledge is so validating and liberating. The fact that I understand myself so much more now, and know that I am not a freak, and not alone, helps more than anything. I don’t believe my parents knew but unfortunately were both deceased before I began figuring it out, so there’s no one left to ask about aspects of my childhood that I can’t remember. I believe my dad was on the spectrum too. Spectrum disorders were barely known back then, and female autism probably not at all. I have three children, all “different,” all possibly with ASD, but undiagnosed as I home-schooled when they were younger. As they are also adults now, it’s tricky to know for sure and the choice is theirs whether to acknowledge it. It would have been much easier understanding it early.
I’m a parent who agrees with your article – My son is 7 and we have had this discussion recently.
I wonder (respectfully and earnestly) if I could ask the autistic adults who read your page how you discuss self advocacy with your child/ requesting accommodation – without dwelling on asd being a “disability” (as described by our Human Rights legislation here in Canada.)
As an example, our guy is enrolled in computer camp here but he needs a support person to get the most out of it, learn and stay safe. My husband (computer guy) took the week off to attend with him. At the last minute the camp said “no parents”. I had to whip out the argument “asd is considered a disability under the Human Rights Code and to access your services you need to accommodate him and allow a support person. That happens to be a parent in this case.” They capitulated.
My question is – is it detrimental to an autistic kid’s self esteem to have to argue asd is a protected “disability” just to get accommodated? How can a parent best prepare/protect their child from seeing themselves as disabled?
I completely agree with all of this and think the words exquisitely chosen. I talk with my son about autism. We started actively discussing it about a year ago. Got some books that explain some of the differences and sensory dysfunction. We also work on social skills. It’s hard for him right now to find the balance between having these differences when he clearly tells me he does not want the difference. We work hard to lift him up and celebrate his awesomeness, because there is truly so much potential within him. I hate that he is not more positive about it. We talk about the amazing parts too, like his ability to read at 5th grade vocab (currently 6 years old) and how one of his super powers is language. He blows us away with his ability to quickly absorb academic knowledge on his own about science, foreign languages, math, & more. And I don’t know if there is another 6 y o with such extensive knowledge of every variation of angry birds, transformers, or Disney cars! However self-care skills, social, and physical strength/coordination are weaker areas where these differences become apparent. He can’t ride a bike fast yet, or get around on a scooter or skateboard. When he plays with other children it’s mostly parallel with some bits of interaction and running around together, here and there. Physically he has trouble keeping up in games, ride-around-things, etc. His intense interests also make it hard for him to relate to similar aged peers, at least in the way that a true connection is formed. His scripting and obsessive topic focus can become a turn off for other children that have tired of hearing about Angry Birds or advanced shapes (dodecahedron anyone?) So, we also talk about how we need to limit these topics to maintain interest when having conversations. That not everyone cares about some subjects as much as he does and that’s ok because we all have our favorite topics & need to learn when it’s time to change the channel. We talk about how conversation is like a dance and there is a synchronous give and take involved for balancing everyone’s contribution. But there are moments where he is aware of not fitting in, not happy, feels misunderstood, and doesn’t want the autism. It’s all I can do to hold in my own tears in these moments. Because I am so proud of him and don’t want him to focus on the negative in this. I don’t want him to see my own moment of intense sadness…after all, how can I breakdown in that moment when he needs to see me strong and reassuring, loving him and knowing there is not all bad to this journey. So I hold it in and smile, hugging him and going over all the good stuff. I promise him that there are others with similar challenges and struggles. Any ideas on how I can help in this aspect of our discussions. I mean I can’t really compare his autism to like Mommy having to wear glasses or his brother needing braces… It’s so much deeper than anything like that. He asks me why, why does he have autism and I’m not sure how to answer. How does anyone answer the why? He has not wanted to talk about it lately, but I see and feel his frustration still. I wish there was a grade school aged group here where he could meet other children with similar neurology-maybe it’s time to try and start a small local gp…want him to have an opportunity for him to really connect… Any ideas or advice are very much appreciated…sorry for the long reply. Just couldn’t help thinking about all of this after reading and genuinely want new perspectives on helping him through his current dislike of autism.
may i recommend reading M @invisible strings? he’s addressed exactly this question if i’m not mistaken. You also might want to post the question on diary’s community support page here on the blog and / or on the parenting autistic children with love and support facebook page where they post questions to the community for answers. xo