Sorry, your kid was always a freak.
It's time for me to get on my autism box again, folks. Apologies in advance. However, a couple incidents in real life and on the internet made me start thinking about something, and I feel the need to share it with cyberspace.
Lots of anti-vaxxers believe that crazy mess in part because they "know" that their kids were ok before they had vaccines. Everything was fine! Little Billy was a genius, life was wonderful, and then he got the vaccine (any vaccine, at this point, I've heard parents blame them all) and suddenly, he was cursed with The Big A, and everything was ruined.
First, let me point out that the human brain is designed to look for patterns and find reason in anything. So lots of people everywhere "know" stuff that isn't true. But that's a whole other blog entry. Second, having a kid with autism isn't the end of the world. But that's a whole other blog entry as well.
My main point here is that these parents are wrong. Why, might you ask? Well, as the parent of someone with The Big A and a teacher of lots of people with The Big A, I can tell you that parents, in general, for any disability, often think their children were fine until something happened. That something can be anything... an illness, an accident, a seizure, a medicine. Whatever. It doesn't matter what the event is, because the event didn't cause the problem. The event was just the catalyst that allowed the parents to suddenly see that there was a problem. However, because our minds are funny things and most people don't know that much about children with disabilities, the event becomes the cause in their minds.
Let me use myself as an example. When my daughter was just shy of her second birthday, I went out of town for a few days. This was the first time I'd ever spent the night away from her. I was beginning to be worried that she wasn't talking, but other than not talking, she seemed fine, and everyone kept telling me not to worry. (If you are a parent of a kid and you think something's wrong, don't listen to the not-worriers. Getting a developmental evaluation never hurts, and even if nothing is wrong, you'll get peace of mind.) When I got back home, excited to see her and sad to hear that she had a bad time sleeping without me, I literally went, "Oh, shit. She has autism," within about two minutes.
Now, I am a professional. I worked with freaking two to six year olds with disabilities at that time, and had for about six years. This shows you that it's entirely different meeting someone and being told, "They have autism," than it is to watch your kid grow up. As they grow up, you just take them in stride. She likes to play alone. She doesn't like that one part of Spongebob and it always makes her cry. Whatever. It's only with hindsight that you see that she actually has crap social skills, and in my case knowing a lot of little kids with autism, I've found that a lot of times they'll get hung up on one part of a tv show that will make them cry.
But that was my experience as a professional. I looked back and saw, from the very day she was born, all the things that in retrospect indicated that Autism Jones came equipped with it from the factory. However, I can easily see how someone without that experience might start looking for causes. For the event. Maybe she'd been sick recently, something, anything. Maybe the trauma of being separated from me gave her autism, who knows? (Lots of family and friends didn't believe that she had autism in the lovely six month or so wait we had to get into the developmental pediatrician.)
Interestingly, when I read Paul Offit's book False Prophets, in the segment about the recent vaccine cases where it was ruled they did not cause autism, there was a snippet where an autism expert, Eric Fombonne, had reviewed old videos of the children in the case. Their parents insisted that vaccines caused their autism, but Fombonne and other experts looked at things like their first birthday videos and found signs of autism (lack of eye contact, response to their name) that simply weren't recognized for what they were.
A big thing that I've seen specific to this idea is when parents say that their kids "stopped talking." My first big experience with this was when I worked with a little guy with multiple, significant disabilities. Now, people who don't know a lot about disability will often ask, "What's wrong with them?" Well, lots of times, nobody knows. Nobody ever will know. I find this especially true of kids with pervasive problems in lots of areas. It's important not to get hung up on this. It doesn't matter why a person is intellectually disabled and can't walk, it just matters how you help them do what they need to do to be happy.
Anyway, for a class I was taking about assessment, I needed to do a file review, and I chose this guy as my subject. The idea of a file review was that you wanted to look back and make a big chart of all the testing and assessments a kid had in their file. Despite the fact that this kid hadn't started kindergarten, his file was huge. Occupational, physical and speech therapy reports, neurologist visits, eye exams, tons of crap.
So the crazy thing I noticed was that the reports started out pretty good. They'd talk about how he was ok except for his gross motor skills. Mom and dad even reported him saying mama and dada. Now, this knocked me for a loop because the kid I knew, five years down the line from that report, couldn't do shit. And I say that as someone who adored him. Couldn't walk, talk, pay attention to anything, do anything functional. Anything! The only noises he ever made were self-stimulatory, repetitive, and basically just purposeless as far as communication went.
However, I noticed that what happened was, with each neurologist visit (and they never did find anything specific that caused his problems, btw) the report got a little gloomier. He went from motor probs but otherwise fine to mild developmental delays in all areas (which was still above where he really was). Eventually, the reports of talking and other crap disappeared, and within a year and a half of neurologist's visits, he ended up with severe global developmental delays as his description, which is where we really were.
The first thing this taught me, as a baby-teacher, was that medical reports rely a great deal on parent reports, and that they are often pieces of crap as far as education goes, especially from that neurologist's office. The second thing is showed me was that parents didn't get it for some reason; in this case, it was obvious that the student hadn't regressed---he had never had the skills in question---but I wasn't sure what that reason was at the time. After thinking about it a lot over the years, this is what I've come up with:
Since nobody expects their kid to have a disability, unless it's something very concrete that can be diagnosed during pregnancy or soon after, like Down Syndrome, you just expect your kid to be doing ok. So when your kid says "dadadadadada" you don't think, "Listen to little Billy perseverate on a sound for self-stimulation!" You think, "Oh, he's saying dada! How sweet!" So what happens is, little Billy keeps saying "dadadadadada" and eventually the time comes that he's supposed to be saying something else. Eventually, Dada realizes that Billy isn't using vocalization to communicate in any way. Somehow, though, with the magic of our brains, lots of parents say, "Billy stopped talking. He used to say mama and dada." Well, he never said mama and dada, you were just giving him credit for that.
Now, I don't want to rag on parents. I think that parents of kids with disabilities get ragged on too much. Us special ed teachers tend to sit around and say, "If only Autism Jones's mom would stop giving her a cookie when she cried, Autism Jones would be good in school." As a parent, however, I can tell you that sometimes giving Autism Jones a cookie when she cries is the best job I can do, and I didn't see in the fine print where it said I had to be a perfect parent just because my kid has a disability. I just think that if more people realized that it's really easy to think that your kid didn't always have autism, when it's very likely that's not true, that maybe people might better come to grips with the data that vaccines don't cause autism.
Lots of anti-vaxxers believe that crazy mess in part because they "know" that their kids were ok before they had vaccines. Everything was fine! Little Billy was a genius, life was wonderful, and then he got the vaccine (any vaccine, at this point, I've heard parents blame them all) and suddenly, he was cursed with The Big A, and everything was ruined.
First, let me point out that the human brain is designed to look for patterns and find reason in anything. So lots of people everywhere "know" stuff that isn't true. But that's a whole other blog entry. Second, having a kid with autism isn't the end of the world. But that's a whole other blog entry as well.
My main point here is that these parents are wrong. Why, might you ask? Well, as the parent of someone with The Big A and a teacher of lots of people with The Big A, I can tell you that parents, in general, for any disability, often think their children were fine until something happened. That something can be anything... an illness, an accident, a seizure, a medicine. Whatever. It doesn't matter what the event is, because the event didn't cause the problem. The event was just the catalyst that allowed the parents to suddenly see that there was a problem. However, because our minds are funny things and most people don't know that much about children with disabilities, the event becomes the cause in their minds.
Let me use myself as an example. When my daughter was just shy of her second birthday, I went out of town for a few days. This was the first time I'd ever spent the night away from her. I was beginning to be worried that she wasn't talking, but other than not talking, she seemed fine, and everyone kept telling me not to worry. (If you are a parent of a kid and you think something's wrong, don't listen to the not-worriers. Getting a developmental evaluation never hurts, and even if nothing is wrong, you'll get peace of mind.) When I got back home, excited to see her and sad to hear that she had a bad time sleeping without me, I literally went, "Oh, shit. She has autism," within about two minutes.
Now, I am a professional. I worked with freaking two to six year olds with disabilities at that time, and had for about six years. This shows you that it's entirely different meeting someone and being told, "They have autism," than it is to watch your kid grow up. As they grow up, you just take them in stride. She likes to play alone. She doesn't like that one part of Spongebob and it always makes her cry. Whatever. It's only with hindsight that you see that she actually has crap social skills, and in my case knowing a lot of little kids with autism, I've found that a lot of times they'll get hung up on one part of a tv show that will make them cry.
But that was my experience as a professional. I looked back and saw, from the very day she was born, all the things that in retrospect indicated that Autism Jones came equipped with it from the factory. However, I can easily see how someone without that experience might start looking for causes. For the event. Maybe she'd been sick recently, something, anything. Maybe the trauma of being separated from me gave her autism, who knows? (Lots of family and friends didn't believe that she had autism in the lovely six month or so wait we had to get into the developmental pediatrician.)
Interestingly, when I read Paul Offit's book False Prophets, in the segment about the recent vaccine cases where it was ruled they did not cause autism, there was a snippet where an autism expert, Eric Fombonne, had reviewed old videos of the children in the case. Their parents insisted that vaccines caused their autism, but Fombonne and other experts looked at things like their first birthday videos and found signs of autism (lack of eye contact, response to their name) that simply weren't recognized for what they were.
A big thing that I've seen specific to this idea is when parents say that their kids "stopped talking." My first big experience with this was when I worked with a little guy with multiple, significant disabilities. Now, people who don't know a lot about disability will often ask, "What's wrong with them?" Well, lots of times, nobody knows. Nobody ever will know. I find this especially true of kids with pervasive problems in lots of areas. It's important not to get hung up on this. It doesn't matter why a person is intellectually disabled and can't walk, it just matters how you help them do what they need to do to be happy.
Anyway, for a class I was taking about assessment, I needed to do a file review, and I chose this guy as my subject. The idea of a file review was that you wanted to look back and make a big chart of all the testing and assessments a kid had in their file. Despite the fact that this kid hadn't started kindergarten, his file was huge. Occupational, physical and speech therapy reports, neurologist visits, eye exams, tons of crap.
So the crazy thing I noticed was that the reports started out pretty good. They'd talk about how he was ok except for his gross motor skills. Mom and dad even reported him saying mama and dada. Now, this knocked me for a loop because the kid I knew, five years down the line from that report, couldn't do shit. And I say that as someone who adored him. Couldn't walk, talk, pay attention to anything, do anything functional. Anything! The only noises he ever made were self-stimulatory, repetitive, and basically just purposeless as far as communication went.
However, I noticed that what happened was, with each neurologist visit (and they never did find anything specific that caused his problems, btw) the report got a little gloomier. He went from motor probs but otherwise fine to mild developmental delays in all areas (which was still above where he really was). Eventually, the reports of talking and other crap disappeared, and within a year and a half of neurologist's visits, he ended up with severe global developmental delays as his description, which is where we really were.
The first thing this taught me, as a baby-teacher, was that medical reports rely a great deal on parent reports, and that they are often pieces of crap as far as education goes, especially from that neurologist's office. The second thing is showed me was that parents didn't get it for some reason; in this case, it was obvious that the student hadn't regressed---he had never had the skills in question---but I wasn't sure what that reason was at the time. After thinking about it a lot over the years, this is what I've come up with:
Since nobody expects their kid to have a disability, unless it's something very concrete that can be diagnosed during pregnancy or soon after, like Down Syndrome, you just expect your kid to be doing ok. So when your kid says "dadadadadada" you don't think, "Listen to little Billy perseverate on a sound for self-stimulation!" You think, "Oh, he's saying dada! How sweet!" So what happens is, little Billy keeps saying "dadadadadada" and eventually the time comes that he's supposed to be saying something else. Eventually, Dada realizes that Billy isn't using vocalization to communicate in any way. Somehow, though, with the magic of our brains, lots of parents say, "Billy stopped talking. He used to say mama and dada." Well, he never said mama and dada, you were just giving him credit for that.
Now, I don't want to rag on parents. I think that parents of kids with disabilities get ragged on too much. Us special ed teachers tend to sit around and say, "If only Autism Jones's mom would stop giving her a cookie when she cried, Autism Jones would be good in school." As a parent, however, I can tell you that sometimes giving Autism Jones a cookie when she cries is the best job I can do, and I didn't see in the fine print where it said I had to be a perfect parent just because my kid has a disability. I just think that if more people realized that it's really easy to think that your kid didn't always have autism, when it's very likely that's not true, that maybe people might better come to grips with the data that vaccines don't cause autism.