A little while back, I overheard a group of women talking to each other about their children with autism and the DAN (Defeat Autism Now) doctors they used. I texted my sister to tell her what I was hearing because to be honest I was surprised DAN doctors were still around since the registry ended in 2011. Caley both texted and called me back (which is very uncharacteristic for her) to let me know in no uncertain terms that I was to walk over and talk to the parents and talk to them about DAN doctors.
Some background on DAN doctors may help explain her reaction. While some (probably most) focus on diet and other not so harmful things, the group became rather notorious within the spectrum community for treatments that can definitely be harmful, like chelation, which is what Caley was worried about. The emotion crackled in her voice.
As the more socially versed of the two sisters, not to mention the one with less autism credibility (it's hard to beat actually being on the spectrum yourself*), I informed her that (a) that wasn't going to change their minds and (b) to do so breaks pretty much every social norm out there.
But she wouldn't be placated, probably rightfully so, and that's how I found myself standing by their table awkwardly interrupting their conversation. My legs were literally shaking, my voice was tinny, and I desperately wanted to be anywhere but there. I forgot half the things I wanted to say (I didn't even mention DAN! doctors!), but thankfully I remembered to give them to links to the websites (this one and Wrong Planet) and wobbled back, still trembling, to my seat, not knowing whether I should regret having gone too far or not having done more.
Why was I so terrified? I've delivered speeches in front of huge lecture halls full of people I don't know without fear. Why would four nice women frighten me so? And when I did, why didn't I confront them with Caley's concerns?
I'm still not sure, but here's what I think. I'm going to take a brief detour here, but stick with me, I'm going somewhere with this.
Parents of children on the spectrum generally get an introduction to the autism world via baptism by fire - it's an extremely difficult experience, to say the least. So let's step into the average parent's first exposure to the world of autism, to understand where these parents are likely coming from and the reason I was so afraid to openly state my disagreement with them, even in a non-threatening, non-judgmental way. These characterizations are stereotypes and certainly not representative of all parents - but they do reflect the experiences of many.
If you're an autism parent, sometime between your baby's birth and their third or fourth birthday, whether through a rapid change or simple realization over time, it becomes apparent that something is DIFFERENT about your child. Grandparents, family friends, and even near strangers pass judgment about the cause freely, as though they were the experts.
One person says your child's behavior is because of bad parenting, the next says there's something wrong with the child, and the last says they're certifiable and/or demon possessed (yes, our mom was actually told that about Caley). You are considered a 'bad parent' if you fail to act on the advice of a single one of them. Even something as simple as going grocery shopping turns into an ordeal as strangers disapprovingly sniff at you when your child has a meltdown. This is the kind of terrible experience that I wholeheartedly blame our society for, but is unfortunately the norm for parents being newly inducted into the role of 'autism parent.'
Then, after however long of a battle, you finally manage to get a diagnosis. Now what? The answer depends on how long diagnosis took, among other things, but the answer is normally guilt and grief. People are telling you something is wrong with your child (hence the grief) and, after all the accusations you've already endured, you're probably willing to at least entertain the idea that this whole thing is your fault (the guilt). The other response is to research, to absorb everything you can find about autism and learn how to help your child.
From here you continue to fight for your child, as you have been all along, but the direction your fight leads you now depends on the conclusion you came to from your research, your own past experiences, and the people who come to support you.
If your research led you to Autism Speaks (which it probably did) and you end up in an autism support group full of pro-cure parents, it's pretty well guaranteed that you're going to end up pro-cure. You will probably try everything to try and fix your child, which can indicate one or more of a great many things, whether they be biomedical treatments, campaigning against vaccines**, diets, herbs, etc. Parents will do anything to help their children - I remember seeing a documentary with a family that even consulted Mongolian shamans (not as though that's typical, but yes, that does happen).
If you're one of these parents, society is not kind to you. Your child can't go out to eat at most restaurants because they don't serve food that conforms with the many diets you're trying - and because they can't go, you probably don't go either. You hunt for schools that will accept children who haven't been vaccinated, because blogs and other parents tell you that causes autism.***
If you're one of these parents, people may criticize you, saying the things you're doing for your child's good are actually harmful. What's more, if you fall in the more extreme fringes of this movement, people might even accuse you of being a bad parent, even though everything you do you do towards the goal of helping your child. But you dig in your heels no matter what they tell you, because you've found your truth and you don't need theirs since you see the evidence every time your child improves.**** You see the proof in how your child is doing and for the first time you have hope.
If your research led you to ASAN or WrongPlanet or another autistic-led group (unlikely at best) and you end up actually talking to autistic adults about autism (even more unlikely), you'll probably end up pro-acceptance. Society is still not kind to you. You'll campaign for acceptance for your child, but it may feel like a lonely battle. You probably fight off peer pressure from other autism parents who may make you feel like a bad parent for not trying anything and everything to cure your child*****.
So you go on with your life, feeling isolated not only from society at large, which still isn't accepting of children with autism, but also from the only people you thought could relate to your situation - other 'autism parents'. (The most vocal and organized ones of which are almost uniformly pro-cure currently, although that, too, is changing.) But no matter what the hardship is or criticism from others, you stick to your guns because you've found your truth and you don't need theirs. You see the proof in how your child is doing and your love sustains you.
So we pick something, and we stick with it. The more the pressure from the outside world (and, perhaps, the greater the support for our stance from "autism parents") the less we're willing to change.
That was what I was walking into. Imagine, if you're either one of those parents and someone walks up to you, after all you've gone through, challenging the foundation upon which you've developed your life, after you've gone through so much to get where you are? I could have had mountains of scientific evidence on my side******, but if I had walked up to those mothers and challenged the point of view that they've battled for and they have made their source of hope, it would have gone badly.
For one thing, I would have been out-argued (four on one, and while I write arguments well, I struggle to keep up verbally), and when I inevitably lost the argument it would have served as further proof to the mothers that they were right. And more importantly than that, I would be just another person who had hurt those mothers, who had made them feel like a bad parent when all they want is the best for their child, the child in the name of whom they have sacrificed so very much. So there was nothing to gain in a confrontation, and everything to lose. Instead, I referred them to some resources they could learn the autistic point of view from, and left it at that.
Maybe some people feel comfortable confronting parents in that situation. But I didn't. And I still don't. Even in this blog, where I've said I'll express my own personal opinion, I find myself shying away from doing so on a regular basis for fear of hurting others with my questioning of their truth (and being hurt for the same reason - did you know some people who take stances about autism get death threats?). But don't let that reluctance mislead you. Everyone may have their own truths, but there still is still actual Truth to be found out there. Instead of defending our own truths so jealously, we would do well to seek the actual truth instead - and have compassion for those whose truths may not match our own.
Footnotes:
*Although, oddly enough, some people will use being autistic as an excuse to devalue what you're saying about autism.
**I'm saying it now, and I'll say it again - the vaccine-autism connection has been disproved. (Yes, there are so many articles from credible sources to that effect that every single one of those words has a link to a different article.)
***The scientific community begs to differ.
****What parents tend to forget is children with autism improve anyways, because children with autism are still children. They grow and develop just like any child. Even if absolutely any treatment or therapy were withheld (as it has been for a lot of earlier generations, before autism was recognized) the child would still improve. So seeing a child improve over time is not proof in any way that whatever treatment you're doing is working. Having scientific backing behind the treatment or a professional recommend it raises the likelihood that you're seeing benefits from the treatment itself rather than just your child's development.
*****Almost all of these attempted cures are without scientific validity and some of them are harmful.
******I actually probably could print out mountains of evidence (from actual legitimate studies), but I certainly wouldn't carry it around with me.
Some background on DAN doctors may help explain her reaction. While some (probably most) focus on diet and other not so harmful things, the group became rather notorious within the spectrum community for treatments that can definitely be harmful, like chelation, which is what Caley was worried about. The emotion crackled in her voice.
As the more socially versed of the two sisters, not to mention the one with less autism credibility (it's hard to beat actually being on the spectrum yourself*), I informed her that (a) that wasn't going to change their minds and (b) to do so breaks pretty much every social norm out there.
But she wouldn't be placated, probably rightfully so, and that's how I found myself standing by their table awkwardly interrupting their conversation. My legs were literally shaking, my voice was tinny, and I desperately wanted to be anywhere but there. I forgot half the things I wanted to say (I didn't even mention DAN! doctors!), but thankfully I remembered to give them to links to the websites (this one and Wrong Planet) and wobbled back, still trembling, to my seat, not knowing whether I should regret having gone too far or not having done more.
Why was I so terrified? I've delivered speeches in front of huge lecture halls full of people I don't know without fear. Why would four nice women frighten me so? And when I did, why didn't I confront them with Caley's concerns?
I'm still not sure, but here's what I think. I'm going to take a brief detour here, but stick with me, I'm going somewhere with this.
Parents of children on the spectrum generally get an introduction to the autism world via baptism by fire - it's an extremely difficult experience, to say the least. So let's step into the average parent's first exposure to the world of autism, to understand where these parents are likely coming from and the reason I was so afraid to openly state my disagreement with them, even in a non-threatening, non-judgmental way. These characterizations are stereotypes and certainly not representative of all parents - but they do reflect the experiences of many.
If you're an autism parent, sometime between your baby's birth and their third or fourth birthday, whether through a rapid change or simple realization over time, it becomes apparent that something is DIFFERENT about your child. Grandparents, family friends, and even near strangers pass judgment about the cause freely, as though they were the experts.
One person says your child's behavior is because of bad parenting, the next says there's something wrong with the child, and the last says they're certifiable and/or demon possessed (yes, our mom was actually told that about Caley). You are considered a 'bad parent' if you fail to act on the advice of a single one of them. Even something as simple as going grocery shopping turns into an ordeal as strangers disapprovingly sniff at you when your child has a meltdown. This is the kind of terrible experience that I wholeheartedly blame our society for, but is unfortunately the norm for parents being newly inducted into the role of 'autism parent.'
Then, after however long of a battle, you finally manage to get a diagnosis. Now what? The answer depends on how long diagnosis took, among other things, but the answer is normally guilt and grief. People are telling you something is wrong with your child (hence the grief) and, after all the accusations you've already endured, you're probably willing to at least entertain the idea that this whole thing is your fault (the guilt). The other response is to research, to absorb everything you can find about autism and learn how to help your child.
From here you continue to fight for your child, as you have been all along, but the direction your fight leads you now depends on the conclusion you came to from your research, your own past experiences, and the people who come to support you.
If your research led you to Autism Speaks (which it probably did) and you end up in an autism support group full of pro-cure parents, it's pretty well guaranteed that you're going to end up pro-cure. You will probably try everything to try and fix your child, which can indicate one or more of a great many things, whether they be biomedical treatments, campaigning against vaccines**, diets, herbs, etc. Parents will do anything to help their children - I remember seeing a documentary with a family that even consulted Mongolian shamans (not as though that's typical, but yes, that does happen).
If you're one of these parents, society is not kind to you. Your child can't go out to eat at most restaurants because they don't serve food that conforms with the many diets you're trying - and because they can't go, you probably don't go either. You hunt for schools that will accept children who haven't been vaccinated, because blogs and other parents tell you that causes autism.***
If you're one of these parents, people may criticize you, saying the things you're doing for your child's good are actually harmful. What's more, if you fall in the more extreme fringes of this movement, people might even accuse you of being a bad parent, even though everything you do you do towards the goal of helping your child. But you dig in your heels no matter what they tell you, because you've found your truth and you don't need theirs since you see the evidence every time your child improves.**** You see the proof in how your child is doing and for the first time you have hope.
If your research led you to ASAN or WrongPlanet or another autistic-led group (unlikely at best) and you end up actually talking to autistic adults about autism (even more unlikely), you'll probably end up pro-acceptance. Society is still not kind to you. You'll campaign for acceptance for your child, but it may feel like a lonely battle. You probably fight off peer pressure from other autism parents who may make you feel like a bad parent for not trying anything and everything to cure your child*****.
So you go on with your life, feeling isolated not only from society at large, which still isn't accepting of children with autism, but also from the only people you thought could relate to your situation - other 'autism parents'. (The most vocal and organized ones of which are almost uniformly pro-cure currently, although that, too, is changing.) But no matter what the hardship is or criticism from others, you stick to your guns because you've found your truth and you don't need theirs. You see the proof in how your child is doing and your love sustains you.
So we pick something, and we stick with it. The more the pressure from the outside world (and, perhaps, the greater the support for our stance from "autism parents") the less we're willing to change.
That was what I was walking into. Imagine, if you're either one of those parents and someone walks up to you, after all you've gone through, challenging the foundation upon which you've developed your life, after you've gone through so much to get where you are? I could have had mountains of scientific evidence on my side******, but if I had walked up to those mothers and challenged the point of view that they've battled for and they have made their source of hope, it would have gone badly.
For one thing, I would have been out-argued (four on one, and while I write arguments well, I struggle to keep up verbally), and when I inevitably lost the argument it would have served as further proof to the mothers that they were right. And more importantly than that, I would be just another person who had hurt those mothers, who had made them feel like a bad parent when all they want is the best for their child, the child in the name of whom they have sacrificed so very much. So there was nothing to gain in a confrontation, and everything to lose. Instead, I referred them to some resources they could learn the autistic point of view from, and left it at that.
Maybe some people feel comfortable confronting parents in that situation. But I didn't. And I still don't. Even in this blog, where I've said I'll express my own personal opinion, I find myself shying away from doing so on a regular basis for fear of hurting others with my questioning of their truth (and being hurt for the same reason - did you know some people who take stances about autism get death threats?). But don't let that reluctance mislead you. Everyone may have their own truths, but there still is still actual Truth to be found out there. Instead of defending our own truths so jealously, we would do well to seek the actual truth instead - and have compassion for those whose truths may not match our own.
Footnotes:
*Although, oddly enough, some people will use being autistic as an excuse to devalue what you're saying about autism.
**I'm saying it now, and I'll say it again - the vaccine-autism connection has been disproved. (Yes, there are so many articles from credible sources to that effect that every single one of those words has a link to a different article.)
***The scientific community begs to differ.
****What parents tend to forget is children with autism improve anyways, because children with autism are still children. They grow and develop just like any child. Even if absolutely any treatment or therapy were withheld (as it has been for a lot of earlier generations, before autism was recognized) the child would still improve. So seeing a child improve over time is not proof in any way that whatever treatment you're doing is working. Having scientific backing behind the treatment or a professional recommend it raises the likelihood that you're seeing benefits from the treatment itself rather than just your child's development.
*****Almost all of these attempted cures are without scientific validity and some of them are harmful.
******I actually probably could print out mountains of evidence (from actual legitimate studies), but I certainly wouldn't carry it around with me.
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