Parenting, childhood disability, and disclosure
February 19, 2020 4:19 AM Subscribe
My daughter was just diagnosed with autism spectrum disorder. How do I think through the ethical issues surrounding when, and to whom, to disclose?
Some salient details about her case: She's super smart, extremely talkative (one might say garrulous), and has reasonably age-appropriate ADLs, so I fully expect she'll be living independently some day and in charge of her own disclosure. To that end, I start with maybe not grabbing an internet megaphone and yelling "[Wallet Name] IS AUTISTIC!" But treating it like a dirty secret also feels wrong.
People we've disclosed to so far: relevant school personnel; our parents; some close friends and coworkers we've gone to for advice during the last year-and-change of puzzlement and worry; our bosses, who will need to be kept apprised if we need FMLA for therapy appointments. But when other people ask "what's up with you," can I talk about this? It is both the main thing I am thinking about and somehow also not my business, which in effect has meant I've been awkwardly dodging small talk for the last week. Parenting is weird.
People we haven't disclosed to yet who will obviously need to know: our daughter herself. We're reading and thinking about a developmentally appropriate way to talk about it. She's at an age where she's starting to understand that she's different from other kids and it bugs her.
We're certainly not about to tell parents of her school friends until our daughter knows herself. Part of me doesn't want to disclose to them at all (I worry about stigma) but I have a feeling I'm going to need to do some advocacy at school, and being able to band together with other parents of 2e kids may be critical. (Decisions about the school environment itself -- that's a different conversation; assume we are happy where we are for the moment; I'd like to focus on the disclosure issue here.)
Guiding lights: We don't want her to feel like her difference is something to be ashamed of. We also don't want her to feel like this disability has to define her. We want to be able to advocate for her, and help her to advocate for herself. We want to proceed in a way that leaves her life possibilities maximally open.
Some salient details about her case: She's super smart, extremely talkative (one might say garrulous), and has reasonably age-appropriate ADLs, so I fully expect she'll be living independently some day and in charge of her own disclosure. To that end, I start with maybe not grabbing an internet megaphone and yelling "[Wallet Name] IS AUTISTIC!" But treating it like a dirty secret also feels wrong.
People we've disclosed to so far: relevant school personnel; our parents; some close friends and coworkers we've gone to for advice during the last year-and-change of puzzlement and worry; our bosses, who will need to be kept apprised if we need FMLA for therapy appointments. But when other people ask "what's up with you," can I talk about this? It is both the main thing I am thinking about and somehow also not my business, which in effect has meant I've been awkwardly dodging small talk for the last week. Parenting is weird.
People we haven't disclosed to yet who will obviously need to know: our daughter herself. We're reading and thinking about a developmentally appropriate way to talk about it. She's at an age where she's starting to understand that she's different from other kids and it bugs her.
We're certainly not about to tell parents of her school friends until our daughter knows herself. Part of me doesn't want to disclose to them at all (I worry about stigma) but I have a feeling I'm going to need to do some advocacy at school, and being able to band together with other parents of 2e kids may be critical. (Decisions about the school environment itself -- that's a different conversation; assume we are happy where we are for the moment; I'd like to focus on the disclosure issue here.)
Guiding lights: We don't want her to feel like her difference is something to be ashamed of. We also don't want her to feel like this disability has to define her. We want to be able to advocate for her, and help her to advocate for herself. We want to proceed in a way that leaves her life possibilities maximally open.
(I forgot to add, its from 2012 so some of the terminology is a little dated (mentioning aspergers versus autism etc), but otherwise it's good imo.)
posted by low_horrible_immoral at 4:39 AM on February 19, 2020
posted by low_horrible_immoral at 4:39 AM on February 19, 2020
The thing about disclosure is you can't really take it back. In particular, people see an autism diagnosis as a permanent, memorable Big Hairy Deal, and it will shape how they see your daughter for a long time. I am open and proud about being autistic, and I hope your daughter someday will feel like she's got the option of being open and proud about it too, but you can't put the cat back in the bag.
Also, you can't control what parents tell their own kids. Telling a lot of adults means risking her classmates finding out. Which you definitely can't put back in the bag.
All of which, I think, is an argument for going slowly with it, especially with adults who aren't autistic themselves and don't have autistic kids, and who may not really grasp the ethical issues involved in spreading information. Keeping quiet now doesn't mean you're treating it as a dirty secret. It means you're being cautious until you've scoped out the lay of the land.
posted by nebulawindphone at 4:54 AM on February 19, 2020 [12 favorites]
Also, you can't control what parents tell their own kids. Telling a lot of adults means risking her classmates finding out. Which you definitely can't put back in the bag.
All of which, I think, is an argument for going slowly with it, especially with adults who aren't autistic themselves and don't have autistic kids, and who may not really grasp the ethical issues involved in spreading information. Keeping quiet now doesn't mean you're treating it as a dirty secret. It means you're being cautious until you've scoped out the lay of the land.
posted by nebulawindphone at 4:54 AM on February 19, 2020 [12 favorites]
It would be so great to be able to disclose slowly but it depends on how obvious the differences are, if they need public interventions and if your daughter can and wants to keep it quiet.
How old is she? Mine cannot keep a secret for very long and is very very into truth telling and a million questions. There was no way she would not tell people randomly about her autism diagnosis tests and interventions - she figured out fast what we were looking into - so I decided to go with "Autism is another part of you like your height. You and some people have a different design of your brain and it means some things are harder and some things are easier. Also, you are awesome."
I started pointing out people we know who are autistic - thank you Greta! and family members. I'm autistic along with some other family members and I said well hey, this is just us and we are wonderfully weird in a particular flavour.
When she meets someone new, she decides for herself when/if to mention autism. At her new school, her teacher at my daughter's request told the classmates about autism in a positive way and she shared a favourite picture book about being an autistic girl. She has friends and the school is so far adjusting to things like her refusal to play at recess, her need to touch multiple surfaces etc.
A lot of work went into making this positive for my daughter. I had multiple conversations with family members, eased her in with positive media about autism and many many short talks, and in changing schools, was upfront with the diagnosis and said "I'm a pushy parent, I want her to have accommodations. Do you have other autistic kids and how do you integrate them?"
This is your daughter's story, and she needs to be in charge of who and when to tell it with you following her lead. My kid knew she was different and putting a name on this and not being the only different kid has been a powerful help to her.
Another kid in my life has a related diagnosis and a teacher incorrectly said this would mean they'd fail at school. They ended up hiding their diagnosis and refusing interventions for a while. This was one comment by a trusted adult vs lots of support from the family and others, so I think you need to have LOTS of support and check-ins to balance out the external negatives, at like a 1:50 ratio.
We had some negatives from some people and I directly addressed them with her , and separately told those people to Not Say Stupid Shit around my kid.
I talk in depth about autism-related parenting issues to a parent friend with similar children. With other parent friends, I don't bring it up because then I'd have to do the 101-autism education and risk them being idiots.
posted by dorothyisunderwood at 5:40 AM on February 19, 2020 [12 favorites]
How old is she? Mine cannot keep a secret for very long and is very very into truth telling and a million questions. There was no way she would not tell people randomly about her autism diagnosis tests and interventions - she figured out fast what we were looking into - so I decided to go with "Autism is another part of you like your height. You and some people have a different design of your brain and it means some things are harder and some things are easier. Also, you are awesome."
I started pointing out people we know who are autistic - thank you Greta! and family members. I'm autistic along with some other family members and I said well hey, this is just us and we are wonderfully weird in a particular flavour.
When she meets someone new, she decides for herself when/if to mention autism. At her new school, her teacher at my daughter's request told the classmates about autism in a positive way and she shared a favourite picture book about being an autistic girl. She has friends and the school is so far adjusting to things like her refusal to play at recess, her need to touch multiple surfaces etc.
A lot of work went into making this positive for my daughter. I had multiple conversations with family members, eased her in with positive media about autism and many many short talks, and in changing schools, was upfront with the diagnosis and said "I'm a pushy parent, I want her to have accommodations. Do you have other autistic kids and how do you integrate them?"
This is your daughter's story, and she needs to be in charge of who and when to tell it with you following her lead. My kid knew she was different and putting a name on this and not being the only different kid has been a powerful help to her.
Another kid in my life has a related diagnosis and a teacher incorrectly said this would mean they'd fail at school. They ended up hiding their diagnosis and refusing interventions for a while. This was one comment by a trusted adult vs lots of support from the family and others, so I think you need to have LOTS of support and check-ins to balance out the external negatives, at like a 1:50 ratio.
We had some negatives from some people and I directly addressed them with her , and separately told those people to Not Say Stupid Shit around my kid.
I talk in depth about autism-related parenting issues to a parent friend with similar children. With other parent friends, I don't bring it up because then I'd have to do the 101-autism education and risk them being idiots.
posted by dorothyisunderwood at 5:40 AM on February 19, 2020 [12 favorites]
Response by poster: Thanks, everyone, for your thoughts so far. My daughter is seven and has an inconsistent filter, so once she knows she’s likely to tell people. I think everyone can tell she’s a little different, but because autism presents differently in girls (as they say) we haven’t met with all that many knowing looks from other parents or anything.
dorothyisunderwood, what is the picture book you mentioned?
posted by sockrilegious at 6:08 AM on February 19, 2020
dorothyisunderwood, what is the picture book you mentioned?
posted by sockrilegious at 6:08 AM on February 19, 2020
As a kid I wouldn't have cared if everyone knew I was on the spectrum if it kept me away from other kids I didn't want to be around anyway or made my life more comfortable. This is a complex issue though, because on one hand, disclosure in certain contexts can help people respect your daughter's boundaries and to not become frustrated or angry/violent/take shit personally with your daughter for being herself, which is something I had to deal with CONSTANTLY and really wrecked me psychologically (that is, having to change my proclivities and inclinations to suit the social desires of others despite not really wanting to or knowing how, being blamed for other's reactions to me).
Outside of relevant professional networks (school, doctors, etc), maybe disclosure should be contextual, if necessary to perhaps smooth over certain social misunderstandings that may arise, perhaps. But most importantly the diagnosis it should be used as means to protect her. It can also be a powerful tool for her to use to protect herself, so her self-disclosure may be the only way she can justify her own boundaries and needs as she begins to grow and realize that she isn't neurotypical. There are several studies on how people with mental illnesses can craft disclosure messages to ease social stigma and foster understanding, but I don't know if any exist for autism. Honestly, even as an adult I haven't been able to leverage my diagnosis to prevent misunderstandings or make my life more comfortable, but knowing it definitely makes self-stigma and feelings of rejection less of a problem.
I did find this article though, which is recent and may be helpful.
posted by Young Kullervo at 6:34 AM on February 19, 2020 [3 favorites]
Outside of relevant professional networks (school, doctors, etc), maybe disclosure should be contextual, if necessary to perhaps smooth over certain social misunderstandings that may arise, perhaps. But most importantly the diagnosis it should be used as means to protect her. It can also be a powerful tool for her to use to protect herself, so her self-disclosure may be the only way she can justify her own boundaries and needs as she begins to grow and realize that she isn't neurotypical. There are several studies on how people with mental illnesses can craft disclosure messages to ease social stigma and foster understanding, but I don't know if any exist for autism. Honestly, even as an adult I haven't been able to leverage my diagnosis to prevent misunderstandings or make my life more comfortable, but knowing it definitely makes self-stigma and feelings of rejection less of a problem.
I did find this article though, which is recent and may be helpful.
posted by Young Kullervo at 6:34 AM on February 19, 2020 [3 favorites]
One option is to let your kid decide who to tell. (After you tell her, which seems like an obvious choice.) Very young people can benefit a lot from being given the power to make decisions for themselves.
posted by eotvos at 7:44 AM on February 19, 2020 [2 favorites]
posted by eotvos at 7:44 AM on February 19, 2020 [2 favorites]
I’m an Aspie girl. It has some things I’d quibble with but overall, it’s one of the better autism picture books and specific to girls which helps.
Mine is 8 btw
posted by dorothyisunderwood at 2:32 PM on February 19, 2020
Mine is 8 btw
posted by dorothyisunderwood at 2:32 PM on February 19, 2020
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posted by low_horrible_immoral at 4:32 AM on February 19, 2020 [1 favorite]