I wanted to share a slightly different perspective. My oldest daughter has some struggles. When she was young, I couldn’t help but notice that she didn’t always fit in with other kids her age, and that she shared some characteristics with classmates who had been diagnosed with autism. It occurred to me once or twice, “should I get this checked out?” But…she was doing well, and I really didn’t like the thought of telling her there was something wrong with the way she was. People have different personalities, right? And it’s ok to be a little quirky and socially nonconforming.
Then she started high school and the wheels came off. She decided she was really a boy (since she didn’t fit in with other girls). She was being severely bullied at school. She started cutting herself, failing her classes and refusing to do the work, had no friends, walked alone with her head down, and spent all her time online. She became a shadow of who she used to be. She asked to be evaluated for autism, so we did, and the results were that she had some traits but didn’t quite meet the criteria for a diagnosis. She was furious. She self-diagnosed with autism, ADHD, dissociative identity disorder, and transgenderism. She really wanted the labels. You could say it was for attention or to feel special but I think a more charitable interpretation is that she felt so bad about herself that she didn’t believe she was worthy of anyone’s notice or friendship as herself, so she needed to become someone different.
We changed schools, but COVID hit so it was all online. I think the damage was already done to her sense of self.
Now it’s six years later. Things are a little better but she still struggles, takes medication for depression, still goes by a male name. She’s leaned into every strange and off-putting behavior, and there’s no question in my mind that if she were evaluated for autism now she would be diagnosed. But would that help her actually become a happier and more functional person? I doubt it.
There are many, many things I wish I could go back and do differently, but one thing I wonder about is whether she’d be better off if I had gotten an autism diagnosis when she was young. Would they have taught her better social skills, and why one might want to behave in more typical ways that others don’t find off-putting? Would it have provided her with an explanation for why she felt different? Is there actually a well-defined thing called autism and does she have it?
I don’t know the answer. I can’t say that we would have had a better outcome if she’d been diagnosed. But I can also say that sometimes you think your child is capable, you try to help them be capable, but things still don’t turn out well.
I am still hopeful that she’ll grow up and be ok in a few more years. We keep trying to push her to do things we know she could do if she believed she could. Sometimes it works. Often it doesn’t.
But I think reducing this to a parent problem is oversimplifying. I wish I could go back and do many things differently, but this certainly isn’t because I or my husband wanted her to be “special” and sought out a diagnosis, nor is it because he’s not present or involved (he’s actually the stay at home parent). So just not looking for a diagnosis doesn’t necessarily solve the problem.
First, thank you for sharing something so vulnerable and difficult.
Totally agree with what you’re saying. And you are certainly not who I am talking about when I refer to a version of FDIA.
I will say, females become very confused by the changes in their hormones, physical body, and their desires. Prenatal testosterone plays a very large role in these desires and preferences. There so much to this, too comprehensive for a Substack note.
Your inclinations are most likely true. She will sort it out. And she will likely either embrace her preferences as more masculine but still female or embrace them as lesbian tendencies. Either way, she will eventually accept that she’s female.
Identity is a struggle. Through puberty it’s primarily a female problem. In adulthood, it’s primarily a male problem.
I can say without a doubt that her NOT having a diagnosis was better than confusing her even further.
Thank you so much for this. I have made many of the same observations and feel so much for the many children whose problems are parent-related more than anything else.
As someone who was misdiagnosed with Asperger's, thank you so much for saying this.
In my case, I really couldn't tell you for certain what happened, but I don't think it was a parental issue. As soon as I started questioning my diagnosis, my family was thankfully always supportive of me getting a second opinion on it. My best guess comes from my mother, who said the psychologist who tested me told her, "Now you can get services" when confirming my (mis)diagnosis - I think the psychologist may have believed she was saving me by giving me the services "just in case."
There's a lot of autistic women who went underdiagnosed due to people assuming they were "just quiet and nerdy," and these aren't stories we should neglect. But at the same time, the overcorrection into thinking everyone who is quiet and nerdy must surely have something deeper going on is a problem.
Like you said, giving out labels when unnecessary DOES cause harm! I say this mainly for the sake of not making this comment any longer than it already is - but I've written extensively about how mine affected me. I love the title here - "Chains for Kids." That's exactly how I'd describe it, too.
Thank you. I appreciate this so much. Makes me wonder about the rise in autism, and separated homes, in conjunction with a pro-maternal legal system. And the social capital involved in having a diagnosed kid…
I've met so many moms and grandmothers who are concerned (or hoping?) their little kid is autistic over very mild symptoms. Most of the time the kid is just high energy and needs that funnelled into sports and to be kept away from refined sugars, petroleum food dyes, and processed foods ...
@Grainger I understand what you’re talking about in this post. I’ve encountered some before. It’s almost like a different type of Munchhausen syndrome by proxy… They’re not sabotaging their kid, but the moms are definitely getting something out of the attention because of their kid.
But also I think there’s other things going on including a desperate emotional need for people to understand, and they almost never do. Even family, after years of explaining your trials, continue to put their foot in their mouths and demonstrate that they don’t understand after all.
There’s an initial reaction to discovering your child has autism typified by four things:
-blaming the messenger, an emotional response.
-panicked studying to learn what it is.
-tremendous distress realizing it’s forever (and you had taken the assumption of having a normal child for granted.)
-deciding when and how to tell family.
But you don’t get used to it, the challenges get worse, more complicated, and instead of being able to come up for air, all your challenges get harder. Doctors with conflicting information and advice. Digging into the bureaucracy only to get lost in red tape. Waiting lists to get signed up for occupational and speech therapy. Medical insurance nightmares, including “we don’t cover it because it’s a pre-existing condition.“
All sorts of medical confusion, helplessness, even nightmare scenarios like trips to the emergency room from seizures, etc. Emotionally and financially falling further behind. Your child’s developmental delays fall further and further behind normal child stepping stones.
and always along the way, your family not understanding. “Why doesn’t your wife just go back to work?“ Even though they know you have no trusted daycare or babysitter that can handle severe autism. Family expectations, “why can’t you pitch in for uncle Harry’s funeral?“ Meanwhile you’re about to lose your house because everything costs a fortune, insurance covers nothing, and you’re sinking financially.
And strongest of all, is the parental, especially mom, need to emotionally vent to someone. Even strangers. You can’t vent to your spouse because you’re both in the same boat. My wife and I both emotionally vomited at whatever poor stranger happened to stay in front of us for 30 minutes from time to time. No one understands and you are desperate to be heard.
For the cases that are so mild that the diagnosis could be wrong, I guess I don’t really understand those as much, but whatever hardships she’s had, she does feel the need to be heard, recognition that her problems have been beyond the norm, etc.
I haven’t yet written the post of what it was like being thrust into the world of having two boys with autism, one of them severe. It’s painful topic, I’m not yet ready to write it. But I seem to be moving a little closer to writing that post one of these months.
Part of my stance on this includes the indirect dilution of valid diagnoses. When we offer up diagnoses to every kid that would rather play APEX than football, and decide they’re autistic, we dilute and sometimes dismiss the ones who actually do need a diagnosis and affordable ABA.
There was a time not too long ago when parents didn't want their children diagnosed with anything at all.....even if they had a condition. Parents didn't want asthma, ADHD, allergies appearing in medical records because a change in insurance coverage "could" mean a whole family denied or reduced in health care coverage. It's like the pendulum has swung too far, but in the opposite direction.
I wanted to share a slightly different perspective. My oldest daughter has some struggles. When she was young, I couldn’t help but notice that she didn’t always fit in with other kids her age, and that she shared some characteristics with classmates who had been diagnosed with autism. It occurred to me once or twice, “should I get this checked out?” But…she was doing well, and I really didn’t like the thought of telling her there was something wrong with the way she was. People have different personalities, right? And it’s ok to be a little quirky and socially nonconforming.
Then she started high school and the wheels came off. She decided she was really a boy (since she didn’t fit in with other girls). She was being severely bullied at school. She started cutting herself, failing her classes and refusing to do the work, had no friends, walked alone with her head down, and spent all her time online. She became a shadow of who she used to be. She asked to be evaluated for autism, so we did, and the results were that she had some traits but didn’t quite meet the criteria for a diagnosis. She was furious. She self-diagnosed with autism, ADHD, dissociative identity disorder, and transgenderism. She really wanted the labels. You could say it was for attention or to feel special but I think a more charitable interpretation is that she felt so bad about herself that she didn’t believe she was worthy of anyone’s notice or friendship as herself, so she needed to become someone different.
We changed schools, but COVID hit so it was all online. I think the damage was already done to her sense of self.
Now it’s six years later. Things are a little better but she still struggles, takes medication for depression, still goes by a male name. She’s leaned into every strange and off-putting behavior, and there’s no question in my mind that if she were evaluated for autism now she would be diagnosed. But would that help her actually become a happier and more functional person? I doubt it.
There are many, many things I wish I could go back and do differently, but one thing I wonder about is whether she’d be better off if I had gotten an autism diagnosis when she was young. Would they have taught her better social skills, and why one might want to behave in more typical ways that others don’t find off-putting? Would it have provided her with an explanation for why she felt different? Is there actually a well-defined thing called autism and does she have it?
I don’t know the answer. I can’t say that we would have had a better outcome if she’d been diagnosed. But I can also say that sometimes you think your child is capable, you try to help them be capable, but things still don’t turn out well.
I am still hopeful that she’ll grow up and be ok in a few more years. We keep trying to push her to do things we know she could do if she believed she could. Sometimes it works. Often it doesn’t.
But I think reducing this to a parent problem is oversimplifying. I wish I could go back and do many things differently, but this certainly isn’t because I or my husband wanted her to be “special” and sought out a diagnosis, nor is it because he’s not present or involved (he’s actually the stay at home parent). So just not looking for a diagnosis doesn’t necessarily solve the problem.
First, thank you for sharing something so vulnerable and difficult.
Totally agree with what you’re saying. And you are certainly not who I am talking about when I refer to a version of FDIA.
I will say, females become very confused by the changes in their hormones, physical body, and their desires. Prenatal testosterone plays a very large role in these desires and preferences. There so much to this, too comprehensive for a Substack note.
Your inclinations are most likely true. She will sort it out. And she will likely either embrace her preferences as more masculine but still female or embrace them as lesbian tendencies. Either way, she will eventually accept that she’s female.
Identity is a struggle. Through puberty it’s primarily a female problem. In adulthood, it’s primarily a male problem.
I can say without a doubt that her NOT having a diagnosis was better than confusing her even further.
Thank you so much for this. I have made many of the same observations and feel so much for the many children whose problems are parent-related more than anything else.
They are almost tired of me saying this at work, but we don’t have a child problem. We have a parent problem.
As someone who was misdiagnosed with Asperger's, thank you so much for saying this.
In my case, I really couldn't tell you for certain what happened, but I don't think it was a parental issue. As soon as I started questioning my diagnosis, my family was thankfully always supportive of me getting a second opinion on it. My best guess comes from my mother, who said the psychologist who tested me told her, "Now you can get services" when confirming my (mis)diagnosis - I think the psychologist may have believed she was saving me by giving me the services "just in case."
There's a lot of autistic women who went underdiagnosed due to people assuming they were "just quiet and nerdy," and these aren't stories we should neglect. But at the same time, the overcorrection into thinking everyone who is quiet and nerdy must surely have something deeper going on is a problem.
Like you said, giving out labels when unnecessary DOES cause harm! I say this mainly for the sake of not making this comment any longer than it already is - but I've written extensively about how mine affected me. I love the title here - "Chains for Kids." That's exactly how I'd describe it, too.
Thank you. I appreciate this so much. Makes me wonder about the rise in autism, and separated homes, in conjunction with a pro-maternal legal system. And the social capital involved in having a diagnosed kid…
I've met so many moms and grandmothers who are concerned (or hoping?) their little kid is autistic over very mild symptoms. Most of the time the kid is just high energy and needs that funnelled into sports and to be kept away from refined sugars, petroleum food dyes, and processed foods ...
@Grainger I understand what you’re talking about in this post. I’ve encountered some before. It’s almost like a different type of Munchhausen syndrome by proxy… They’re not sabotaging their kid, but the moms are definitely getting something out of the attention because of their kid.
But also I think there’s other things going on including a desperate emotional need for people to understand, and they almost never do. Even family, after years of explaining your trials, continue to put their foot in their mouths and demonstrate that they don’t understand after all.
There’s an initial reaction to discovering your child has autism typified by four things:
-blaming the messenger, an emotional response.
-panicked studying to learn what it is.
-tremendous distress realizing it’s forever (and you had taken the assumption of having a normal child for granted.)
-deciding when and how to tell family.
But you don’t get used to it, the challenges get worse, more complicated, and instead of being able to come up for air, all your challenges get harder. Doctors with conflicting information and advice. Digging into the bureaucracy only to get lost in red tape. Waiting lists to get signed up for occupational and speech therapy. Medical insurance nightmares, including “we don’t cover it because it’s a pre-existing condition.“
All sorts of medical confusion, helplessness, even nightmare scenarios like trips to the emergency room from seizures, etc. Emotionally and financially falling further behind. Your child’s developmental delays fall further and further behind normal child stepping stones.
and always along the way, your family not understanding. “Why doesn’t your wife just go back to work?“ Even though they know you have no trusted daycare or babysitter that can handle severe autism. Family expectations, “why can’t you pitch in for uncle Harry’s funeral?“ Meanwhile you’re about to lose your house because everything costs a fortune, insurance covers nothing, and you’re sinking financially.
And strongest of all, is the parental, especially mom, need to emotionally vent to someone. Even strangers. You can’t vent to your spouse because you’re both in the same boat. My wife and I both emotionally vomited at whatever poor stranger happened to stay in front of us for 30 minutes from time to time. No one understands and you are desperate to be heard.
For the cases that are so mild that the diagnosis could be wrong, I guess I don’t really understand those as much, but whatever hardships she’s had, she does feel the need to be heard, recognition that her problems have been beyond the norm, etc.
I haven’t yet written the post of what it was like being thrust into the world of having two boys with autism, one of them severe. It’s painful topic, I’m not yet ready to write it. But I seem to be moving a little closer to writing that post one of these months.
Part of my stance on this includes the indirect dilution of valid diagnoses. When we offer up diagnoses to every kid that would rather play APEX than football, and decide they’re autistic, we dilute and sometimes dismiss the ones who actually do need a diagnosis and affordable ABA.
There was a time not too long ago when parents didn't want their children diagnosed with anything at all.....even if they had a condition. Parents didn't want asthma, ADHD, allergies appearing in medical records because a change in insurance coverage "could" mean a whole family denied or reduced in health care coverage. It's like the pendulum has swung too far, but in the opposite direction.