Daughter with autism—what now?
August 16, 2023 3:40 AM Subscribe
My super cool, but struggling, 9 year old daughter was recently diagnosed with autism. After long grappling with her needs with too little support, we think we have the right team to help her and us. I hoped to get input from other parents on resources you’ve found helpful after getting your child’s diagnosis—particularly for a girl and maybe on the mild end of the spectrum.
Kid is great, and smart, but has struggled socially and academically. She already knows she has ADHD and anxiety, but longs to be “normal” (her words) and I think may take the autism badge hard.
Meanwhile, as a parent, I’m not certain how to navigate this. We have a new parent coach to help us with strategies to give her good supports and boundaries. And, of course, she’s the still the same funny, caring, exhausting person she was before her diagnosis. I’m grateful for the additional resources that may be available to her with the diagnosis, but leery of the stigma and how she will feel.
A lot of feels!
Other parents, particularly of autistic girls, are there resources that you’ve found helpful to get your bearings? Thanks.
Kid is great, and smart, but has struggled socially and academically. She already knows she has ADHD and anxiety, but longs to be “normal” (her words) and I think may take the autism badge hard.
Meanwhile, as a parent, I’m not certain how to navigate this. We have a new parent coach to help us with strategies to give her good supports and boundaries. And, of course, she’s the still the same funny, caring, exhausting person she was before her diagnosis. I’m grateful for the additional resources that may be available to her with the diagnosis, but leery of the stigma and how she will feel.
A lot of feels!
Other parents, particularly of autistic girls, are there resources that you’ve found helpful to get your bearings? Thanks.
I’m not the parent of an autistic kid, but I was an autistic kid, though I wasn’t diagnosed until I was an adult. I want to offer some advice from my perspective. If I were growing up now, I think there’s a good chance someone would suggest my parents have me assessed, but when I was a kid, my high-masking, quiet, anxious personality wasn’t read as autistic.
The autism spectrum isn’t a linear thing that goes from least autistic to most autistic. It’s a really common misunderstanding. A lot of what leads us to talk about “mild” vs “severe” autism is how the autistic person’s traits, symptoms, or needs clash with existing systems. So, a kid who has fewer meltdowns in school will be perceived as having mild autism compared to one who has more. But that kid isn’t less autistic, and thinking of her autism as mild may result in some of her support needs going unmet. I really like the way Matt Lowry depicts the autism spectrum in the first image on this page.
Your concern about how she’ll feel about the badge of autism (in light of wanting to be “normal”) is understandable. She feels not-normal because the world isn’t built for brains like hers. Think about how you’d talk about left-handedness with a kid who just wants to be “normal” and use regular scissors. It’s not a perfect analogy, but it’s useful. Remember that it’s not a choice between no label and autism, it’s a choice between self-developed labels like “stupid” and autism. When the label is “stupid,” there’s not much she can do besides get frustrated with herself. When the label is autism, she can use it to figure out accommodations that might help. E.g., “When I’m in a loud room, my autistic brain gets overwhelmed. My headphones help me make things quieter so I can feel calm.”
If you’re on Facebook, there’s a group called “Ask autistic adults—resource for parents of autistics” that I’d recommend.
posted by theotherdurassister at 4:58 AM on August 16, 2023 [11 favorites]
The autism spectrum isn’t a linear thing that goes from least autistic to most autistic. It’s a really common misunderstanding. A lot of what leads us to talk about “mild” vs “severe” autism is how the autistic person’s traits, symptoms, or needs clash with existing systems. So, a kid who has fewer meltdowns in school will be perceived as having mild autism compared to one who has more. But that kid isn’t less autistic, and thinking of her autism as mild may result in some of her support needs going unmet. I really like the way Matt Lowry depicts the autism spectrum in the first image on this page.
Your concern about how she’ll feel about the badge of autism (in light of wanting to be “normal”) is understandable. She feels not-normal because the world isn’t built for brains like hers. Think about how you’d talk about left-handedness with a kid who just wants to be “normal” and use regular scissors. It’s not a perfect analogy, but it’s useful. Remember that it’s not a choice between no label and autism, it’s a choice between self-developed labels like “stupid” and autism. When the label is “stupid,” there’s not much she can do besides get frustrated with herself. When the label is autism, she can use it to figure out accommodations that might help. E.g., “When I’m in a loud room, my autistic brain gets overwhelmed. My headphones help me make things quieter so I can feel calm.”
If you’re on Facebook, there’s a group called “Ask autistic adults—resource for parents of autistics” that I’d recommend.
posted by theotherdurassister at 4:58 AM on August 16, 2023 [11 favorites]
Make sure she has control over what information is shared with other people. Before meetings with doctors/lawyers/teachers/etc, I will recap briefly with my kid what info I expect to share and ask if she's comfortable with that. Last year she had me reduce what I shared with her teachers and she limits details on updates to her dad, or she will be the one telling him, not me. I also tell her after the meeting if she's not present what was discussed in age-appropriate terms.
Mine is a pre-teen and has gone from being pretty upfront and owning her identity as an autistic girl to not wanting anything to do with autism in public and being pretty self-conscious about other autistic people, but still really wanting to consume media featuring autistic people.
I have normalised social scripts and role-playing as just something we do. We do practice runs before big events so she feels ready when they happen. I also use a lot of timers and lists with her.
If she has siblings or close friends, it's good to figure out with her how she'd like to talk about the things she needs extra support on with them so she doesn't feel like she has to mask around them. It's also good to have the 'fairness/equality' talk for siblings - why does this kid get to eat dinner on the couch while the rest of us have to sit at the table, explaining what are accommodations and also checking in that you aren't over-focusing on one kid.
Also I get a fair amount of pushback from other well-meaning parents about my kid just needing more discipline, a better routine, not being spoiled, etc. You and your partner need to feel firm on your own parenting and distinguish between well-meaning clueless and judgey mean people.
posted by dorothyisunderwood at 5:19 AM on August 16, 2023 [11 favorites]
Mine is a pre-teen and has gone from being pretty upfront and owning her identity as an autistic girl to not wanting anything to do with autism in public and being pretty self-conscious about other autistic people, but still really wanting to consume media featuring autistic people.
I have normalised social scripts and role-playing as just something we do. We do practice runs before big events so she feels ready when they happen. I also use a lot of timers and lists with her.
If she has siblings or close friends, it's good to figure out with her how she'd like to talk about the things she needs extra support on with them so she doesn't feel like she has to mask around them. It's also good to have the 'fairness/equality' talk for siblings - why does this kid get to eat dinner on the couch while the rest of us have to sit at the table, explaining what are accommodations and also checking in that you aren't over-focusing on one kid.
Also I get a fair amount of pushback from other well-meaning parents about my kid just needing more discipline, a better routine, not being spoiled, etc. You and your partner need to feel firm on your own parenting and distinguish between well-meaning clueless and judgey mean people.
posted by dorothyisunderwood at 5:19 AM on August 16, 2023 [11 favorites]
I talked to her a lot about what's cool about her brain as a person with autism. It's just neurodiversity.
I encouraged her to let me or her teacher know what helps her in school to stimulation.
This may be particular to my family, but playing D&D with her dad and friends did amazing things for her social skills. She's now president of the D&D club at her STEM high school.
posted by heathrowga at 6:38 AM on August 16, 2023 [2 favorites]
I encouraged her to let me or her teacher know what helps her in school to stimulation.
This may be particular to my family, but playing D&D with her dad and friends did amazing things for her social skills. She's now president of the D&D club at her STEM high school.
posted by heathrowga at 6:38 AM on August 16, 2023 [2 favorites]
It's been a journey for my daughter, who was diagnosed three and a half years ago. For the first several years she was basically paralyzed with shame -- the diagnostic process was tied up in some real trauma she experienced at school, and she definitely read the diagnosis as, "your teachers were right and you are Very Bad Forever," and she would melt down any time we tried to talk about it. Over the last year she has started to own it to a greater degree, and I think the big turning points were (1) growing into enough social understanding to see for herself that her social experiences were not the same as other kids', not just in school, and getting curious about the reason, and (2) learning that one of her close friends is autistic, too. So, I would say that wherever your child is right after talking about this, don't assume that this will be forever.
Some media I have liked:
Stimmy Kitty, a short series of comics about an autistic girl and her undiagnosed mom
Everything Is Gonna Be Okay (super not for a nine year old audience, definitely needs some content warnings for language, but ultimately a positive message). Features autistic actors.
I really liked Extraordinary Attorney Woo, although its portrayal of a savant definitely rubbed some people in the community the wrong way.
I lead with stories because I think that's an important part of the journey. Clinicians and teachers often act like house inspectors and treat your child like a to-do list of broken shit you have to fix, but that's not right, and I found stories to be a reframing I really needed. You'll encounter a lot of controversy online (though not here, where I think the community is pretty univocal) about autistic self-advocacy and what parents of autistic people ought to be doing. My own philosophy has been, regardless of what other "autism parents" whose kids have really high support needs are up to, my own child is very obviously going to be a self-advocate some day, and so that's the group whose views I ought to privilege. So I lurk on the #ActuallyAutistic tag on social media to learn what autistic adults say about their experiences. An adult friend with autism recommended the book Loud Hands and that was a nice introduction to the community perspective as well.
I have one group of friends I discuss autism with, friends in other cities who don't know my kid and won't affect her social situation at all. I was the first to disclose, but three years later, several more of our kids have been diagnosed. Having the support of other parents who have similar children is really a good thing, if you can find it in a place that won't threaten your daughter's privacy.
posted by sockrilegious at 7:31 AM on August 16, 2023 [1 favorite]
Some media I have liked:
Stimmy Kitty, a short series of comics about an autistic girl and her undiagnosed mom
Everything Is Gonna Be Okay (super not for a nine year old audience, definitely needs some content warnings for language, but ultimately a positive message). Features autistic actors.
I really liked Extraordinary Attorney Woo, although its portrayal of a savant definitely rubbed some people in the community the wrong way.
I lead with stories because I think that's an important part of the journey. Clinicians and teachers often act like house inspectors and treat your child like a to-do list of broken shit you have to fix, but that's not right, and I found stories to be a reframing I really needed. You'll encounter a lot of controversy online (though not here, where I think the community is pretty univocal) about autistic self-advocacy and what parents of autistic people ought to be doing. My own philosophy has been, regardless of what other "autism parents" whose kids have really high support needs are up to, my own child is very obviously going to be a self-advocate some day, and so that's the group whose views I ought to privilege. So I lurk on the #ActuallyAutistic tag on social media to learn what autistic adults say about their experiences. An adult friend with autism recommended the book Loud Hands and that was a nice introduction to the community perspective as well.
I have one group of friends I discuss autism with, friends in other cities who don't know my kid and won't affect her social situation at all. I was the first to disclose, but three years later, several more of our kids have been diagnosed. Having the support of other parents who have similar children is really a good thing, if you can find it in a place that won't threaten your daughter's privacy.
posted by sockrilegious at 7:31 AM on August 16, 2023 [1 favorite]
The autism spectrum isn’t a linear thing that goes from least autistic to most autistic. It’s a really common misunderstanding. A lot of what leads us to talk about “mild” vs “severe” autism is how the autistic person’s traits, symptoms, or needs clash with existing systems. So, a kid who has fewer meltdowns in school will be perceived as having mild autism compared to one who has more. But that kid isn’t less autistic, and thinking of her autism as mild may result in some of her support needs going unmet.
Quoting this for truth and emphasis.
My son has autism and for many years it was basically a non-issue, partly because he is an only child and also because he performed very well in school until about 10 years old.
However, this changed around age 12, he will soon turn 15, and in the last years it has become incredibly hard for him to participate in school and social life in general. He has not attended school since 12 months, and in general does not leave the house much anymore. The change from child to teenager (physical but more so societal expectations) is hard on him.
One of the main reasons he rejects school is that teachers accepted that a 9 or 10 year old has problems with executive function / self organisation and were willing to accommodate him. teachers expectations of an older child/teenager change massively, they simply cannot grasp that he (despite a gift for maths and logic) still has great difficulty in reading a wall clock, and deciphering a timetable and arrive in a room on time, with the books and materials required. This was tolerated when he was 9, but at 14 is not acceptable. The scissors of societal expectations and his ability to adapt and blend in is widening with every year. I am right now in the process of arranging (and fighting) for the practical assistance he will need to return to school. He needs more assistance now than 3 years ago dealing with school logistics as teachers expectations of a teenager are much Higher.
I think the best you can do is arrange a support network that will endure as she grows older. She will change and with that what she needs will change.
Re women and autism, i recently discovered Judy Singer, she herself, her daughter and her mother are on the autism spectrum.
posted by 15L06 at 8:13 AM on August 16, 2023 [3 favorites]
Quoting this for truth and emphasis.
My son has autism and for many years it was basically a non-issue, partly because he is an only child and also because he performed very well in school until about 10 years old.
However, this changed around age 12, he will soon turn 15, and in the last years it has become incredibly hard for him to participate in school and social life in general. He has not attended school since 12 months, and in general does not leave the house much anymore. The change from child to teenager (physical but more so societal expectations) is hard on him.
One of the main reasons he rejects school is that teachers accepted that a 9 or 10 year old has problems with executive function / self organisation and were willing to accommodate him. teachers expectations of an older child/teenager change massively, they simply cannot grasp that he (despite a gift for maths and logic) still has great difficulty in reading a wall clock, and deciphering a timetable and arrive in a room on time, with the books and materials required. This was tolerated when he was 9, but at 14 is not acceptable. The scissors of societal expectations and his ability to adapt and blend in is widening with every year. I am right now in the process of arranging (and fighting) for the practical assistance he will need to return to school. He needs more assistance now than 3 years ago dealing with school logistics as teachers expectations of a teenager are much Higher.
I think the best you can do is arrange a support network that will endure as she grows older. She will change and with that what she needs will change.
Re women and autism, i recently discovered Judy Singer, she herself, her daughter and her mother are on the autism spectrum.
posted by 15L06 at 8:13 AM on August 16, 2023 [3 favorites]
Parent of autistic kid (boy) here.
First: there's no such thing as 'mild end of the spectrum'. There is an excellent essay explaining this here: “Autism is a Spectrum” Doesn’t Mean What You Think
Secondly: the most important thing is to first do no harm. Unfortunately, parents of autistic kids have been using ABA therapy for decades, which is tremendously harmful and widely deprecated by autistic people who have suffered through it. Because autism is seen as a pathology, stims are seen as symptoms, and ABA prevents stims, ABA despite its horrific history and wide reports of harm and long-term damage has remained the officially recommended path by the medical establishment until very recently (medical professionals have only just started to move away from it, after years of pushback).
Thirdly: decide what is the problem you are actually trying to solve? Autism is not a problem in itself. So if there are specific things that are harming your child or preventing her from thriving, identify those and seek accommodations that will allow her to be happy and to thrive. Don't try to make her adapt to the world; instead make the world adapt to her.
The best thing you can do right now is to educate yourself from neurodiversity-affirming sources. A good one is Thinking Person's Guide to Autism. Stay away from ableist and harmful literature/orgs like Autism Speaks.
Having an autistic child is a little like having a queer child in the sense that much of mainstream society (including parents, unfortunately) are actively working against their child's happiness and prioritizing "fitting in" to the rest of society despite their own child repeatedly telling and showing them that this shoehorning is not working.
posted by splitpeasoup at 9:36 AM on August 16, 2023 [7 favorites]
First: there's no such thing as 'mild end of the spectrum'. There is an excellent essay explaining this here: “Autism is a Spectrum” Doesn’t Mean What You Think
Secondly: the most important thing is to first do no harm. Unfortunately, parents of autistic kids have been using ABA therapy for decades, which is tremendously harmful and widely deprecated by autistic people who have suffered through it. Because autism is seen as a pathology, stims are seen as symptoms, and ABA prevents stims, ABA despite its horrific history and wide reports of harm and long-term damage has remained the officially recommended path by the medical establishment until very recently (medical professionals have only just started to move away from it, after years of pushback).
Thirdly: decide what is the problem you are actually trying to solve? Autism is not a problem in itself. So if there are specific things that are harming your child or preventing her from thriving, identify those and seek accommodations that will allow her to be happy and to thrive. Don't try to make her adapt to the world; instead make the world adapt to her.
The best thing you can do right now is to educate yourself from neurodiversity-affirming sources. A good one is Thinking Person's Guide to Autism. Stay away from ableist and harmful literature/orgs like Autism Speaks.
Having an autistic child is a little like having a queer child in the sense that much of mainstream society (including parents, unfortunately) are actively working against their child's happiness and prioritizing "fitting in" to the rest of society despite their own child repeatedly telling and showing them that this shoehorning is not working.
posted by splitpeasoup at 9:36 AM on August 16, 2023 [7 favorites]
Are you autistic? What about the other genetic parent? Perhaps a grandparent?
I ask because autism is a neurotype that is highly heritable, upward of 80-90% by latest research. There is a very good chance that someone in the fam is autistic too.
What’s more affirming than being autistic together?
posted by lloquat at 10:52 AM on August 16, 2023
I ask because autism is a neurotype that is highly heritable, upward of 80-90% by latest research. There is a very good chance that someone in the fam is autistic too.
What’s more affirming than being autistic together?
posted by lloquat at 10:52 AM on August 16, 2023
Fixed link for the above: I Will Die On This Hill (and in case my fixed link isn't as fixed as I think it is: that's the title of a book by Meghan Ashburn and Jules Edwards).
posted by ManyLeggedCreature at 3:57 AM on August 17, 2023
posted by ManyLeggedCreature at 3:57 AM on August 17, 2023
« Older Apache forward proxy with credentials | Librarians of mefi, what does "unable to purchase"... Newer »
You are not logged in, either login or create an account to post comments
My daughter is potentially neurodivergent and will have an IEP this year.
I've always communicated to her that there's no such thing as "normal," and that we're all different in our own way.
I've also said a diagnosis is information. Diagnosis isn't destiny. It's not a character flaw. It's just a way forward, so we can get the help we need.
I'm disabled, so it gave us an entry point to how brains and bodies can be different from one another, and how people with differences can also be a lot alike.
"Mommy doesn't like fluorescent lights because they trigger her chronic migraine, you don't like fluorescent lights because you have sensory processing differences, we're going to work together to finish the errand and then do something calm."
posted by champers at 4:35 AM on August 16, 2023 [2 favorites]