In the last few days a bit of an uproar has occurred over some comments that I wrote on other people's blogs. And I continued my comments on my post here. I have to say the outrage was totally unexpected not because I think everyone needs to agree with me, but because quite frankly they were simply personal mommy-blogs. I honestly felt we were sharing ideas and figuring things out on the best way to raise our autistic children. I also didn't think that my perspective could be seen as derogatory or demeaning.
In truth when I say I hate autism, which set people off in the first blog, its not that I hate autistic people. It is that I hate the emotional turmoil and the trauma that comes with the autism. I hate seeing my children in pain and barely able to function. I hate all the issues and problems that stem from the autism but I do not hate nor disregard the autistic person. Look at it this way, as a parent if my children were NT and the biggest issue they faced in their lives was typical teenage angst I would hate teenagehood angst because it caused my child pain. We hate what hurts our children. It may be an inarticulate way to put it but there it is in a nutshell.
You ask does she see the good that her children receive from autism? I know that my children revel in their autism. They revel in the fact that their autism makes them who they are and how they view the world. They like being who they are and who they are includes autism. No they never describe themselves as autistic anything. They don't think its important. That is their chioce. So yes, I see the good that comes from their autism because it makes my children happy. By the way, the boys came to this conclusion individually and on their own. There was no prodding, no poking, no leading them. They have always possessed an individuality and are able to make up their own minds about who they are. Once when we were participating in a genetic study on autism and the boys wanted to know why they were giving blood, the nurse told them that this was for a study to find a way to help people with autism. "I am just fine," the older one said. "Me too," said CM2. She had to explain that the study was to find ways to help those more severely affected by their autism and that noone was gong to try to change them without their permission. "OK, then," CM1 said and he then gave blood.
Now what I was not completely ready for in response to some of my comments, even though at times I have experienced some negativity over the years, was actually being called the names I was and being accused of being some kind of evil person. I suppose with all the years I have spent as a special education advocate, the fights I have fought for my boys and the autism education I try to provide wherever I go, the last thing I expected was to be attacked. Yes I did experience some rather ridiculous internet wide assaults when I happened to criticize Glee, there were actually Glee forums dedicated to my evisceration (I kid you not), however this time I suppose that considering who I was writing to and for and the topic being discussed I thought it was a friendly open and honest discussion.
Well you could have knocked me over with a feather. If you follow me on twitter you actually saw how upset I was. I was not kind in return by any stretch of the imagination. I was hurt, angry and decidedly mean. I hit back the way I was hit. Nope not the most grown-up of ways to handle things, but then again I felt assaulted by people whom I spend my entire waking life trying to advocate for. Maybe not on a personal level but on a community wide level. So honestly I felt betrayed.
Now here comes the truly interesting part...I was contacted by someone, an autism self-advocate, whom I had befriended on twitter. I consider her someone to look up to and someone to greatly admire. I read everything she writes and follow her thoughts and ideas trying to apply them and her lessons to the boys.
She told me that when she read what I had written, her initial reaction was that my words felt like some kind of slap. That I was telling autistics the same thing that they had been told their entire lives, that they can't because of their disability...luckily she knew me through social media and knew that had to not be what I meant. I am so glad she realized that and contacted me. My boys had been told that they too can't enough in their lives that I would never ever say that to anyone about anything. Here is the conversation that followed:
A: In the end, I think it comes down to how can society best function. Many seem to look at it as an either/or solution, I look at it...
A:..as looking for win/win scenarios. Those of us with ASDs have something to offer...sometimes we can offer it in the same way other do.
A: Other times, we can't...the question is, what is better for society? That we not contribute at all, or to contribute in a modified way?
A: Often, how people view our limitations and differences, seem to lead to the first. For example, a person's intelligence is dismissed...
A: ..because they don't speak in the same way other's do. But they are a really talented programmer. Wouldn't we want to world to recognize
A: That not being able to speak in the same way as others is not the same as not being smart, or not being able to contribute?
A: If he has to spend all of his time worrying how people perceive how he talks -- is he applying the same amount of energy toward...
Me: it's finding the way for those with ASD to access their gifts and this may mean a revaluation of the environment so they can do their thing
A: ..programming as he could be otherwise? What is crucial for him to do the job? The core competencies (programming), or the speech?
Me: We face that ignorance with the boys all the time. Oldest has real social issues in new circumstances. People assume he has intellectual...
Me: ...disability. But in reality he's brilliant.
A: Exactly...and that I think is what advocates are arguing for...it's not "let me not contribute"...
A: It's "let me contribute in a way that works for me and for you." Sometimes that means changing mindsets.
Me: So it's looking beyond that to see who he is. I get that. I just really think in certain instances job requirements can't change
A: In my day job, I wear a lot of hats...but one of the things I do is work heavily in my company to promote diversity and inclusion.
Me: It's why we say in our heads not to him... Civil rights law.. Great. Civil rights orgs, NGOs, appellate lawyer but trial lawyer not with auditory processing disorder.
A: I've discussed these issues with a lot of people...and yes, I think there are limits. But those limits depend on the person.
Me: But we never tell him no just in case we can figure out a way it can be possible too.
Me: I would really like to know more of how u do the inclusion. We r concerned for that aspect of their future. Don't even know where to start
A: The workplace isn't a friendly one in many organizations...that's something I try to work with in my place.
A: What I've learned is never to assume based on my external knowledge of a person's disability what they can do...
A: It really depends on their own self-awareness and knowledge, and their modes of adaptation. I've worked with blind people, people with CP
A: And a host of other disabilities...and it's amazing how people can adapt. I think the same is true of those with AS.
Me: Think how u just explained this to me is so very important for people to understand
A: I think what tends to push peoples' buttons, is when blanket statements are made as to what people can and can't do.
A: I think it really comes down to what people on the spectrum choose to do with their lives.
A: Just like Temple Grandin, when it comes down to it, when the passion is there, the adaptation follows.
Me: We get those blanket statements about the boys all the time. Mostly from the drs who r supposed to help them
Me: Had a huge fight with them... Told them the answer isn't no they can't but to find a way that yes they can
Me: Thank you for this chat.
A: ... I do things we aren't "supposed" to be able to do. Like work in groups, advocate, etc. Someday, they will know that we can.
Me: I do have a question. When I read back what u wrote it seemed to be you were talking about accommodations so people can be productive
Me: But I never said I was against accommodations. My boys have accommodations up the ying yang
Me: So what I am trying to figure out then is what do the national advocates want beyond that
Me: That is y I call it entitlements...there r just some aspects of life and jobs that cannot b changed to suit anyone and they shouldn't be
Me: I think jobs where u r responsible for others lives in that case..surgeon, police officers, navy seals etc. this is what I am talking about.
Me: Can u explain to me about jobs like that and how that would work. This is y I am confused
A: That, I think, goes back to what I said about it being a out the *person* not the *disability*.
A: I don't necessarily agree that people with AS by default would not be qualified or able to do such jobs, just by virtue of having AS.
A: It may be a bad match for some...but not all. It depends on the abilities of the person. Some of the things you cited as reasons a person...
A: ...with AS should not be allowed to be a police officer included things I do in my job *successfully* every day. And I am consistently...
A:..rated as higher than than average, in a very tough environment. W/o accommodations b/c I am not out. (Although the overcompensation...
A: ...Has has caused me to develop some severe stress-related problems). It goes back to looking at each person as an individual.
A: Tony Attwood has actually stated in interviews that law enforcement might be a great match for someone with AS...
A: Especially if it's their special interest. Intensive coaching may be needed to develop social skills strategies prior. Again, poss for some
A:...Not all. I think the same goes for surgeons. Do you like to read? If you do, I think it might be interesting for you to read Oliver Sacks
A: "An Anthropologist on Mars" -- the one in which he writes about Temple Grandin. Another of the stories in there is about a surgeon...
A: ...who has severe Tourette's.It's an amazing story about how he was able to adapt and be successful in a field most wouldn't think he could be
Me: But that is my point. I am not saying that they cannot accomplish these goals with some help, support etc. My boys r evidence of that
Me: My question was do the advocates think the rules should be changed if they cannot meet the requirements? I think we actually agree on this
Me: I am fully aware that it is the person not the disability..again that has been my entire life for last over thirty years.
Me: Interesting you mention law enforcement and AS. Oldest loves forensic shows but can't do the math required for science, so another reason
Me: we thought law school for him..the DA's office, investigator etc if that is the way he wants to go. Criminal justice etc
Me: The requirement change is why I reference that women who can't do the heavy lifting as a firefighter are given a pass...
Me: The rules and requirements change for them to get more women firefighters. That is what I mean by entitlement too. What is autism advocacy
Me: about that issue..that is the one that bothers me..changing the rules even after someone gets the help to learn what to...
Me: am i making my question clear?
A: What it sounds like me, is that there is a disconnect between what you believe to be the core responsibilities of a job and what they do
A: In the workplace there is an expectation that you be able to perform certain core competencies of a job...
A: But there are tons of debates as to what core competency consists of...
A: You may not want a woman on the front lines in a situation where they're required to carry more than they are able, but are there other ways
A: They can contribute? In a football team has different positions...
A: But I really think that you're coming up against, is that what you wrote give the impression to some that you are saying...
A: That someone with AS could never do those things and should never try. Because we heard that all of our lives, we are sensitive to that.
A: It's a worry, when someone who is considered an expert because they are a parent, give that impression because it worsens....
Me: NONONO...that is not what I am saying at all. Of course someone with AS can do anything they want...OK. I see how everyone is taking it
Me: I am going to create an interesting blog today with your tweets and my explanation
Me: OMG my biggest fight is telling ppl the boys can do anything they want to do and to get the hell out of their way..
A: the stigma and prejudice we run into in the workplace already. So again I think it may have been about what was understood vs what was meant
So here I was faced with the reality of others being hurt by what I wrote because I did not make myself clear enough and me on the other hand being hurt by what they responded in kind. There is no way I would ever denigrate someone with AS or any disability. There is no way I would ever say that they cannot contribute, that they are not entitled to accommodations or to be respected, wanted and loved. This is a fight I fight daily for the boys and I would never think that they and not someone else is entitled to all that we fight to accomplish. So I am sorry that my comment was written so poorly that it hurt people's feelings.
I have to admit something, I was not gong to write an apology line at all. I was going to stick to the idea of what I meant and what I have done within the community and require people to look beyond my words. But you know I realized something. Illustration:
The other day someone had posted an article about a political issue that was replete with antisemitic dog-whistles in the comments that the author of the article did not refute or challenge. When I told the poster that that was insensitive and hurtful instead of saying she was sorry, that she didn't mean anything and/or hadn't read the comments. Her response was to tell me that I was hypersensitive and to get over it. Well after calling her an antisemitic bitch I blocked her ass.
Now having experienced such a similar situation but with me on the receiving end, and quite recently to boot, I realized that yes the grown-up thing to do is apologize. By the way I do still hold with my belief that when you are offended you shouldn't lash out at first, you should try to figure out who the person is and what they meant by what they said. It's why I contacted that poster in my illustration. Not to chastise her but to ask her why she thought something like that was appropriate. It's why I am thankful for my tweind the autism-self-advocate who contacted me and explained to me how what I wrote was perceived and what it might mean to people who did not know me.
So I learned several things that I had not known before. One is that what is ultimately wanted by autism advocates is not so much an entitlement perspective as some may view it. On the contrary, it is the right to merely have a chance to be seen as viable human beings that with understanding and compassion can make great contributions and strides within society. Which is exactly what I have been working for all these years as well. And two is that lashing out because I was hurt is not always such a good thing either. Nothing gets done that way and we end up yelling past each other instead of working together.
OK, so now I get it and now I get why it hurt so many people. Instead of talking to each other we had been talking past each other. I for one should have realized that I was merely misunderstood and that I needed to make my self clearer. That it wasn't me that people were upset with so much as it was what they perceived to be the continuation of that societal paradigm that infantilizes and marginalizes those with disabilities. In the end I realized that what I was afraid society would do when disability advocates requested more access to every part of society, the infantilization and marginalization, was already the way society functioned towards those with special needs. That it is the fight to end the condescension that pervades society that is the purpose of all the accommodations and the fight to modify society's views and preconceived notions.
So in the end, I promise next time I'll read what I write more carefully so everyone in the community understands that we are truly on the same side. And I don't come off sounding like someone I am not.
Until next time,