When I was homeschooling my kids and on an assortment of email lists, it was fairly common for the childen that were being discussed to have an assortment of labels for their various issues. They typically acquired some of those labels while in public school in order to get an IEP -- Individual Education Plan -- and get written permission to do things in a way that worked for them.
While in public school, both of my kids had IEPs and both had some official labels, like dysgraphia, but Twice Exceptional (2e) kids tend to look fairly average. Their strengths mask their weaknesses and their weaknesses mask their strengths and they may make a lot of Bs in school while school staff members miss the fact that the child is under enormous stress and is also losing their marbles from boredom.
So the fact that my sons tended to lack official labels for their issues was not due to dereliction of duty on our part as parents. For a lot of years, my oldest was an enigma wrapped in a mystery concealed in shadows, revealing nothing.
He went to a really good public school from kindergarten through second grade. They had assessed him for ADHD in kindergarten and ruled it out.
In some other school in another state, a teacher suggested we "put him on ritalin" so he would sit still in class. That boils down to "Let's just skip the diagnostic part and go straight for drugging the child for my conenience."
Since ADHD had already been ruled out, this made his dad especially angry. The man actually raised his voice in that meeting, which was rather uncommon for my ex.
When my oldest was assessed for ADHD in kindergarten, I was told "He's really weird. He actually pays more attention the longer the sentence is." Kids that age typically start spacing out if the sentence is too long. They don't have the vocabulary and mental focus for big words and long sentences.
Later, while involved with The TAG Project, I realized this was a sign of him being bright and bored in school, which was one reason he could not sit still. Even though it was a good school, they didn't make that connection -- that he was very, very bright and that explained some of his behavioral problems and social difficulties.
One of my early blogs was called Kids Like Mine and it was called that because my sons didn't have a lot of formal diagnoses for their issues, so I often wrote emails to TAGMAX using that phrase. I was often saying "My child doesn't have asperger's, but kids like mine who have trouble with X often find thus and such helpful in this situation."
Eventually, people began suggesting my kids probably qualified for those labels and maybe should be seen by someone and formally labeled. I looked into that when I was considering going to the Gifted Development Center in Denver, Colorado to have my sons assessed but I was told I didn't need a formal diagnosis to get insurance coverage or something. I was told I could self-refer and insurance would cover it and then we never went because I had a terrible health crisis and ended up bedridden for some months and largely housebound for a number of years.
So it was mostly through participation on the TAGMAX email list that I gradually learned that my oldest likely qualifies for a fairly long list of labels though he did not have most of them applied to him in school. He's extremely 2e and mostly made Bs in school, plus the occasional A and the occasional C, and the school mostly missed that he was very bright and his mental ability was being hampered by various disabilities.
Even as late as age 19 or 20 I was still learning new things about him. One day at that age, he said something to me like "I knew my fever likely had broken because I was no longer tasting colors" and I was like "Okay, woah. So you ALSO have synesthesia, at least when sick enough, and this is news to me, your mother. Let me go on the list and ask around."
I was familiar with the idea of synesthesia from being on all these lists but I was still discovering new details about my child. When I had read about this odd thing, I had not paid close attention because it's very unusual and I had no reason to believe it applied to my life in any way.
So I tended to avoid labels on the list and this was somewhat controversial. I avoided them in part because my sons had a lot of issues like these kids who had been formally diagnosed but my sons often did not have a formal diagnosis, so I just talked about "Kids like mine" or "kids like that" and avoided saying things like "Kids who are ASD."
This is actually not that weird, though it seemed to make me weird when talking on these lists. Out in the world, a lot of people have various impairments and no formal label and often don't want to be stuck with a formal label.
Most data I have seen suggests that around 20 percent of adults are handicapped, but according to a study done by Microsoft some years ago, 60% (101.4 million) of working-age adults are likely or very likely to benefit from the use of accessible technology.
From what I gather, this study was done in an unusual manner and actively avoided using stigmatizing terms like handicapped or disabled. The study tried really hard to use neutral language and get data on "Would x, y or z be helpful to you?" and many more people than usual more or less said "Why, yes! I have problems doing some things and I would love having things be easier for me."
So the reality is most people who have some degree of impairment do not self-identify as handicapped. And both those people who don't need a label to make their life work and those people who do need a label to make their life work are typically fiercely protective of their status of label or no label.
People with severe handicaps get really cranky about people with more moderate handicaps trying to claim some kind of label and trying to say they are entitled to accommodation. They act like they are trying to take advantage in some way and making life harder for people with REAL handicaps.
Conversely, people who are only moderately impaired or for whatever reason able to make life work without a formal label of disabled make a lot of effort to deny that their impairment constitutes a disability. They will say things that roughly boil down to "Yes, I have x, y and z issues but it's not like I'm handicapped."
When I was on TAGMAX, a fair number of parents -- including my husband -- would talk about having some of the same issues as their special-needs child and then add some kind of qualifier about how "but it's not like real bad for me" or something like that. They would try to position themselves as sympathetic, but, unlike their child, not actually handicapped.
My ex-husband, the father of both of my sons, had serious handwriting issues, eyesight issues and social issues. He likely could have gotten a diagnosis for asperger's or dysgraphia or any number of things and we did a lot to accommodate his issues, but if he had a favorite pen that was treated like a personal quirk and not an accommodation for a handicap, even though accommodation for his handicap is exactly what that was.
He was career military. He was good at his job. It was just not in his best interest to get diagnosed with some handicap or other. That could have potentially interfered with his career and he was able to do his job, so he didn't need people thinking he couldn't for some reason.
I have long hated labels, but they are sometimes a necessary evil for purposes of communicating with other people. They sometimes also give one perspective.
When I went to the Beyond IQ conference in the Boston area right before my oldest turned 13, I attended a talk by Kathi Kearney. She was one of the big names in the gifted world and I knew her from my involvement with The TAG Project.
And she gave an example in her talk about an 11 year old with an IQ of 180 being the mental equivalent of an 18 year old or high school senior. Afterwards, I introduced myself and asked "If an 11 year old tested as senior in college level instead of senior in high school level, what kind of IQ would that be?" because I had such test results for my oldest.
Professional ethics prevented her from naming a number but she recognized my name and said something like "Oh, you poor thing. But it will be okay because you homeschool."
So I went back to my hotel room and called my sister and apologized to her for telling her she was an idiot or something when she had previously suggested his IQ might be "above 200" and I freaked out for about two hours, wondering how on earth I was going to raise and teach this child.
And then I calmed down and told myself I had been raising him and teaching him just fine for a lot of years already and this revelation didn't fundamentally change that. I always knew he was "bright, but had some problems" and this new framing of "extremely high IQ and seriously handicapped" only told me something useful about just how extreme his profile was, but didn't fundamentally change anything.
He was still the same child he had been before I attended that talk and he was the same child I had been raising very successfully for nearly thirteen years already.
So labels can be useful at times. They can be useful for getting accommodation in school. They can help you sort out just how big a difference we are talking about when trying to figure out what works with your child and they can be useful for trying to communicate with people and get people on the same page.
But there can also be downsides to labels and I often actively avoid them.
A good friend had a child diagnosed with selective mutism and when she used that label to explain her child's tendency to get tongue-tied, it only made her social problems vastly worse. It didn't help anything.
So she went back to saying "Oh, she's just shy." to explain her child's tendency to be quiet in some settings. That was a more useful label for actually smoothing things over and reducing social issues for her child than selective mutism.
While in public school, both of my kids had IEPs and both had some official labels, like dysgraphia, but Twice Exceptional (2e) kids tend to look fairly average. Their strengths mask their weaknesses and their weaknesses mask their strengths and they may make a lot of Bs in school while school staff members miss the fact that the child is under enormous stress and is also losing their marbles from boredom.
So the fact that my sons tended to lack official labels for their issues was not due to dereliction of duty on our part as parents. For a lot of years, my oldest was an enigma wrapped in a mystery concealed in shadows, revealing nothing.
He went to a really good public school from kindergarten through second grade. They had assessed him for ADHD in kindergarten and ruled it out.
In some other school in another state, a teacher suggested we "put him on ritalin" so he would sit still in class. That boils down to "Let's just skip the diagnostic part and go straight for drugging the child for my conenience."
Since ADHD had already been ruled out, this made his dad especially angry. The man actually raised his voice in that meeting, which was rather uncommon for my ex.
When my oldest was assessed for ADHD in kindergarten, I was told "He's really weird. He actually pays more attention the longer the sentence is." Kids that age typically start spacing out if the sentence is too long. They don't have the vocabulary and mental focus for big words and long sentences.
Later, while involved with The TAG Project, I realized this was a sign of him being bright and bored in school, which was one reason he could not sit still. Even though it was a good school, they didn't make that connection -- that he was very, very bright and that explained some of his behavioral problems and social difficulties.
One of my early blogs was called Kids Like Mine and it was called that because my sons didn't have a lot of formal diagnoses for their issues, so I often wrote emails to TAGMAX using that phrase. I was often saying "My child doesn't have asperger's, but kids like mine who have trouble with X often find thus and such helpful in this situation."
Eventually, people began suggesting my kids probably qualified for those labels and maybe should be seen by someone and formally labeled. I looked into that when I was considering going to the Gifted Development Center in Denver, Colorado to have my sons assessed but I was told I didn't need a formal diagnosis to get insurance coverage or something. I was told I could self-refer and insurance would cover it and then we never went because I had a terrible health crisis and ended up bedridden for some months and largely housebound for a number of years.
So it was mostly through participation on the TAGMAX email list that I gradually learned that my oldest likely qualifies for a fairly long list of labels though he did not have most of them applied to him in school. He's extremely 2e and mostly made Bs in school, plus the occasional A and the occasional C, and the school mostly missed that he was very bright and his mental ability was being hampered by various disabilities.
Even as late as age 19 or 20 I was still learning new things about him. One day at that age, he said something to me like "I knew my fever likely had broken because I was no longer tasting colors" and I was like "Okay, woah. So you ALSO have synesthesia, at least when sick enough, and this is news to me, your mother. Let me go on the list and ask around."
I was familiar with the idea of synesthesia from being on all these lists but I was still discovering new details about my child. When I had read about this odd thing, I had not paid close attention because it's very unusual and I had no reason to believe it applied to my life in any way.
So I tended to avoid labels on the list and this was somewhat controversial. I avoided them in part because my sons had a lot of issues like these kids who had been formally diagnosed but my sons often did not have a formal diagnosis, so I just talked about "Kids like mine" or "kids like that" and avoided saying things like "Kids who are ASD."
This is actually not that weird, though it seemed to make me weird when talking on these lists. Out in the world, a lot of people have various impairments and no formal label and often don't want to be stuck with a formal label.
Most data I have seen suggests that around 20 percent of adults are handicapped, but according to a study done by Microsoft some years ago, 60% (101.4 million) of working-age adults are likely or very likely to benefit from the use of accessible technology.
From what I gather, this study was done in an unusual manner and actively avoided using stigmatizing terms like handicapped or disabled. The study tried really hard to use neutral language and get data on "Would x, y or z be helpful to you?" and many more people than usual more or less said "Why, yes! I have problems doing some things and I would love having things be easier for me."
So the reality is most people who have some degree of impairment do not self-identify as handicapped. And both those people who don't need a label to make their life work and those people who do need a label to make their life work are typically fiercely protective of their status of label or no label.
People with severe handicaps get really cranky about people with more moderate handicaps trying to claim some kind of label and trying to say they are entitled to accommodation. They act like they are trying to take advantage in some way and making life harder for people with REAL handicaps.
Conversely, people who are only moderately impaired or for whatever reason able to make life work without a formal label of disabled make a lot of effort to deny that their impairment constitutes a disability. They will say things that roughly boil down to "Yes, I have x, y and z issues but it's not like I'm handicapped."
When I was on TAGMAX, a fair number of parents -- including my husband -- would talk about having some of the same issues as their special-needs child and then add some kind of qualifier about how "but it's not like real bad for me" or something like that. They would try to position themselves as sympathetic, but, unlike their child, not actually handicapped.
My ex-husband, the father of both of my sons, had serious handwriting issues, eyesight issues and social issues. He likely could have gotten a diagnosis for asperger's or dysgraphia or any number of things and we did a lot to accommodate his issues, but if he had a favorite pen that was treated like a personal quirk and not an accommodation for a handicap, even though accommodation for his handicap is exactly what that was.
He was career military. He was good at his job. It was just not in his best interest to get diagnosed with some handicap or other. That could have potentially interfered with his career and he was able to do his job, so he didn't need people thinking he couldn't for some reason.
I have long hated labels, but they are sometimes a necessary evil for purposes of communicating with other people. They sometimes also give one perspective.
When I went to the Beyond IQ conference in the Boston area right before my oldest turned 13, I attended a talk by Kathi Kearney. She was one of the big names in the gifted world and I knew her from my involvement with The TAG Project.
And she gave an example in her talk about an 11 year old with an IQ of 180 being the mental equivalent of an 18 year old or high school senior. Afterwards, I introduced myself and asked "If an 11 year old tested as senior in college level instead of senior in high school level, what kind of IQ would that be?" because I had such test results for my oldest.
Professional ethics prevented her from naming a number but she recognized my name and said something like "Oh, you poor thing. But it will be okay because you homeschool."
So I went back to my hotel room and called my sister and apologized to her for telling her she was an idiot or something when she had previously suggested his IQ might be "above 200" and I freaked out for about two hours, wondering how on earth I was going to raise and teach this child.
And then I calmed down and told myself I had been raising him and teaching him just fine for a lot of years already and this revelation didn't fundamentally change that. I always knew he was "bright, but had some problems" and this new framing of "extremely high IQ and seriously handicapped" only told me something useful about just how extreme his profile was, but didn't fundamentally change anything.
He was still the same child he had been before I attended that talk and he was the same child I had been raising very successfully for nearly thirteen years already.
So labels can be useful at times. They can be useful for getting accommodation in school. They can help you sort out just how big a difference we are talking about when trying to figure out what works with your child and they can be useful for trying to communicate with people and get people on the same page.
But there can also be downsides to labels and I often actively avoid them.
A good friend had a child diagnosed with selective mutism and when she used that label to explain her child's tendency to get tongue-tied, it only made her social problems vastly worse. It didn't help anything.
So she went back to saying "Oh, she's just shy." to explain her child's tendency to be quiet in some settings. That was a more useful label for actually smoothing things over and reducing social issues for her child than selective mutism.