I don't normally give these people much attention but I've not had the best of days and I've had it with this type of attitude. I wouldn't have even known about this is she hadn't posted the link in the comment to my *Autism is not one size fits all *post from the other day....
I was writing this post to address what I feel is a problem in the Autism community. While I was speaking only for myself, clearly many of you out there agreed with me. I was sharing my experience and that's all. I wasn't attaching anyone and I had no one in mind while writing this. This woman, who's blog can be found *here*, has basically attached me for my opinion and wants proof of my experiences. Really?
She took many things out of context and completely missed the point of the post. This post was from *my* perspective, based on *my* experience. She has no taken this to twitter and continued to spread misinformation.
Why would would my kids Autism diagnosis even come into question? I was simply writing from *my* perspective. That's all.. Wow..Intolerant much?
You can always send me an email if you have questions or concerns about something I wrote.
I have no problem at all with someone disagreeing with what I have to say but she has taken it to more of a personal level and that's just immature. I copied her post and tried to make it readable. Everything in red is her response to my post. I made the colors different in order to make reading it a bit easier.
She wants links to people that are intolerant within the Autism community. Here's one: A Life Less Ordinary.
I have responded to her accusations and highlighted my responses in yellow.
Thank you very much for helping me to illustrate my point.
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"Autism and Asperger aren't even in the same universe." I beg to differ
This day, it has been a day. My two sons, one of whom is diagnosed with Asperger Syndrome (AS) and the other of whom has ADHD so disabling that he can’t be in a regular classroom (meds are contraindicated because of his tics and OCD), were very, very off today. Homeschooling was disastrous. There was much flapping, odd body posturing, echolaling, patterned grimacing, vocalizing, and a complete inability to focus. It was an intensely frustrating morning with two non-neurotypical children who were utterly dysregulated. That left me with some dysregulation as well, something that was not helped by coming across this blog post from someone who is a parent of three children, one with autism and two, he says, with AS.
The post contradicts itself from beginning to end. But that’s not what made it one of the most angering posts I’ve seen in the autism blogosphere in a long, long time. Nope. What the writer did in this post was take his personal example with his children and (a) claim that unnamed people are harassing him to be more positive about autism, (b) that autism and AS are “not even in the same universe," and (c) that autism is so very, very much more horrible than AS, based on his experience with his children, that it’s simply unacceptable for anyone to behave as though they were similar or as though autism could have any positive aspects to it.
The writer trots out ideas and concepts that I thought were seeing the final dying of the light. Ideas such as a diagnostic and binary separation between AS and autism. Ideas that the autistic people who speak out on behalf of autism as something besides a wholesale tragedy are all AS or “high functioning.” These chestnuts from the autism files nevertheless emerged in this post as Golden Truths.
I’d ignore the entire thing if it weren’t for the fact that it’s been “liked” and retweeted many, many times. The fact that it exists, the fact that people still seem to buy into these erroneous and unsupported assertions—especially that all autism parents with positive attitudes are parents of “high-functioning” children and that all autistic people who advocate are “high functioning”—the fact that people are still buying into this makes me ill. It’s offensive and demoralizing to me, so I can only imagine how autism parents whose children have intense autism or autistic people who are intensely autistic must feel when they read this kind of thing.
I have taken the post piece by piece below, in italics, and added commentary.
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*I want to preface this post with a few things. I’m not attempting to force anyone to see things my way. I realize, that we will never all be on the same page. However, what I hope to do is point out a problem within the Autism community that contributes to the rift that has occurred between parents of kids in different places on the spectrum. I think that we need to be able to show a basic level of respect for each other. Everyone’s experience with Autism is different. It’s important to realize that one person’s experience with Autism does not mirror another person’s by default. *
First of all, this perpetuates the presumption that the “rift” is between parents of children who are at different places along the spectrum. I’m running down the list of autism parents I know well and with whom I share a similar attitude, and they are split about evenly between having children who have intense autism and having children who are currently diagnosed with PDD-NOS or AS. I’ve seen this hoary old chestnut dug up again and again, yet reality defies its assertions. Attitudes about autism, from my experience, have little to do with the autism itself and everything to do with the owner of the attitude.
My response: I interact with a very high volume of people with this blog, so I have heard from *many, many* parents. WOW, I can't even believe you said that last sentence. That is simply arrogance and shows how little you understand.
I have noticed a lot of criticism lately aimed at parent’s that tend to not see the positive side of Autism. I really am dumbfounded by the lack of compassion individuals in the Autism community can have for one another. I realize that my blog is sorta unique in the sense that I don’t try to paint a positive image where there isn’t one and I’m not afraid to address the reality of how Autism has affected my family.
I’d like to see the links to this criticism. Where is it? And I can’t see how this blog is unique in presenting the reality of autism. I read many, many blogs and Tumblrs whose writers—both autistic and parents of autistic people—articulate quite clearly the realities of autism. I address the realities on my own blog, in fact. There are no unicorns and rainbows there or here. If I choose *not* to present a negative experience (or a positive one, for that matter) here, it's not from intellectual or willful dishonesty or fear but because I always strive to honor my children's right to personhood and individuality and work to avoid public writing about things that might be humiliating or shaming to them, whether they would be aware or not.
My Response: Why would I need to produce links when clearly many people agree with me? My children have nothing to be ashamed of. I have made the choice to post what I do as a means of helping people understand what *some* families are going through. You are well within your right to live a more private life. I have no problems with that. I won't comment on your blog. We all have to make a choice as to how we deal with our lives. Just because I have chosen a different path should not give you the right to do this.
Many of the Autism related blogs out there are really upbeat and positive…and that’s cool, if that’s their experience. I just wonder why people are so afraid to be more honest about their experience, especially when that experience is more negative? I say this all the time but I’ll say it again. It’s so vitally important that we share our stories, both good and bad. The only way people (including those within the Autism community) are going to ever recognize and acknowledge that there is a difference between raising a child with Aspergers and raising a child with lower functioning Autism, is if they know it’s there.
This is a presumption that people are being dishonest in how they describe their lives and an implication that “being upbeat and positive” is somehow the equivalent of living a lie. That they're "afraid" to be honest. Those implications are absolutely *not* cool--you are taking it upon yourself to accuse people of intellectual dishonesty. Some people are naturally upbeat and positive, and some people are naturally negative and suffer from martyr complexes. If you don’t like reading writing from people who are generally happy about their lives or who take a positively realistic attitude about them, then don’t.
My Response: I never said dishonest. Those were your words and you have publicly quoted me as saying something that I haven't. That doesn't help your credibility. Wow, you have been reading way to much into this. All I was saying is that, in *my experience*, some people are afraid to speak about the negative side that *can* come along with Autism. They are afraid for good reason. Just look at what you have done. You have attacked me for having an opinion that differs from your own. I have no problem reading the many positive things that people have to say about their experience with Autism. What I had an issue with is people like you attacking me for feeling the way that I do. Just because you can remain positive doesn't mean that others can do the same. Not everyone shares your experience.
If we don’t speak up, no one will ever hear our voice and the world will go on seeing only one part of what Autism is.
Who is “we” here?
My Response: We as a community, but more specifically, those with different experiences. Everyone's voice matters. For people to better understand the complexity of Autism they need to see it's many sides.
I think it’s important for people to be as transparent as possible when it comes to something as misunderstood as Autism. I say misunderstood because the general public, heck, the special needs parents within the Autism community itself, seem to lack the understanding of just how profoundly dynamic Autism can and will be.
I again would like to see some evidence of this lack of understanding within the special needs community, specifically the autism community, at least besides this egregiously misinformed post. I’ve never come across it.
My Response: I'm happy that you have never had to face anyone that casts judgement upon you for having a different opinion or for seeing thing in a different light. No one should have to face that.
I know I sound like a scratched record, but Autism and Aspergers aren’t even in the same universe and I can comfortable say this having children in both places on the spectrum. What happens all to often, is that Aspergers becomes the public face of the Autism spectrum and it’s only voice. This is a huge problem, especially for families like mine. As a parent to 2 boys with Aspergers and 1 with Autism, I feel very comfortable saying that.
Autism and AS are “not even in the same universe,” and your evidence for this claim is within your own family? That’s not evidence. That’s not a “HUGE” problem. It’s your problem. You’re presuming that the autistic voices you hear are all from people with AS. I’d like to see your evidence of that. From my personal experience, many autistic voices I hear and read are from people who would be considered intensely autistic. Also from my experience, my son has a diagnosis of AS. The reason? He used words “on time.” Without that criterion, he would have an autism diagnosis. The line is *that fine*. By the way, those words he used? They were e*cholalia*, but in 2002, we didn’t know that.
My Response: Again, you are misreading the post. I was referring specifically to *raising *a high functioning child and raising a lower functioning child. I hate even saying that but I don't know how else to word it. I'm sorry that you feel the need to rip this apart.
I hear, so often from people with an Aspergers child, “why are you so negative”, “Autism is a blessing”, “my child is mainstreamed and doing great” or “you just need to be more positive.”... I swear to God, if I hear that one more time my head will explode. This is exactly why Autism and Aspergers should be considered different disorders. I know I won’t make a lot of new friends by saying that but I really don’t care.
Where are you hearing this? Links? Who are these AS parents who are telling you this? They shouldn't step into your life and tell you how to live it any more than you should lecture people about how honest they are about their personal experiences.
My Response: I'm not lecturing anyone. Everyone has the right to live their life on their own terms. I was speaking about Autism Awareness and how I think we can improve it. If you actually think that this kind of thing I'm talking about isn't going on then you are living a very sheltered life and should count yourself lucky that you haven't had to face this type of intolerance.
While Autism and Aspergers share some of the same traits, raising a child with Autism and raising a child with Aspergers isn’t even in the same league. Now, before you flood me with hate mail, remember, I have a child with Autism as well as 2 boys with Aspergers, so I understand the difference.
I’m not sure you do understand the diagnostic difference, which in our own case happens to be a very murky one, and the current evidence suggests that there may not be one. Again, you use your family n of 1 and your individual n of 3 to support what you’re saying. Do you have any actual links or data?
My Response: Again, you read way to much into this. I was referring to the difference in *raising* children in different places on the spectrum. I was also speaking from my personal experience and not speaking form you, or anyone else for that matter.
Now, PLEASE hear me when I say this, I’m NOT saying that raising a child with Aspergers is easy, because it isn’t. I’m completely aware of this fact.
*While raising a child with Aspergers is not easy, it is however, very different than raising a child with Autism. Raising a child with Autism is very often infinitely more challenging. I understand why Aspergers was added to the Autism spectrum. I also understand why it’s going to be removed in the next edition of the DSM*.
Raising a child is not easy. Period. My child with ADHD, tics, and OCD has considerable disability and struggles that are an extraordinary challenge for us all, but he’s not autistic. Raising him is very different from raising my sole apparently neurotypical child, but my neurotypical child is also a huge challenge, often in some very neurotypical ways.
My Response: Again, with the whole reading into things. I have a very narrow focus with this post and you are reading way to much into it and taking things out of context.
Honestly, I don’t personally care, one way or the other as I have much bigger things to worry about.
Clearly, this is untrue, as you’ve devoted this entire blog post to it.
My Response: I was referring to whether or not Aspergers would be removed from the Autism Spectrum. I don't care either way because it doesn't change the reality of my family's struggles.
However, and this is a big however, that doesn’t mean I don’t recognize this as a problem. I see and hear almost everyday what the general public and the Autism community itself, thinks Autism is. I find it disturbing that people within the Autism community don’t realize there is more to Autism than Aspergers.
On what do you base this assumed lack of information on the part of the “autism community”? I’ve been deeply involved in this community for about 7 years and have not observed what you describe here. This blanket assertion is baffling to me.
My Response: Quite frankly, people like you.
I’m going to say something, with no intentions of offending anyone and with the up most respect. If you think that raising a child with Aspergers is the same as raising a child with Autism, you have no idea what you’re talking about. It’s so unfair to judge a parent struggling with Autism, for not being more positive. The reason they aren’t all sunshine and roses is because many times, there is no positive side to Autism.
You are being offensive. Period. And again, who is it who is hassling you about being more “positive”? And there are a lot of intensely autistic people out there who would take tremendous issue with your assertion that “there is no positive side to autism.” I can only imagine that to them, your words are cruel and incredibly offensive.
My Response: I'm sorry you were offended by what I had to say but as I stated, it's my opinion and my experience. You are also making inferences that I never intended you to make. There are plenty of positives about Autism that I post about. However, in my personal experience, with my family, the negative sometimes outweighs the positive.
Why is this so difficult for people to understand. It’s very clear that many special needs parents out there don’t acknowledge the difference between raising a child with Aspergers and raising a child with Autism, let alone recognize the fact that there is difference in the first place..
It’s unclear still what people are supposed to understand or what you think people find difficult. Your entire post has been devoted to complaining about how different AS and autism are and how people just don’t understand and how negative autism is, but you’ve not provided on iota of evidence or even an example to support what you say. Who are these people who don’t “acknowledge” the differences between raising a child with AS and a child with autism, as you distinguish them in your lexicon? Where are they? I've always acknowledged that raising any of my children will be our own unique experience and not like that of anyone else.
My Response: Wow, I really don't even know what to say tho this one.
Autism is by definition, a *spectrum disorder*. *Meaning that Autism is a condition that is not limited to a specific set of symptoms but can and will, vary infinitely within the continuum. *
*This is why* *Autism for you is NOT Autism for me*.
AS and autism are not even in the same universe, but they both happen to be spectrum disorders, which you define here as varying “infinitely within a continuum.” How can you assume that your experience applies to all considerations of AS versus autism while then stating the above? Autism for you, I must observe, is not autism for me, either.
I also don’t know anyone who’s ever seriously asserted that their experience with autism is the archetypal experience to which everyone else should refer. Why would they? Hasn’t the trope, “If you’ve met one person with autism, you’ve met one person with autism” been repeated enough yet?
My Response: The more I read what you wrote the more I feel sorry for you. You apparently have no idea who I am and what I stand for. I would never assume to know what someone else has experienced when it comes to Autism. Again, you are misreading my post. I'm sorry that my experience is so disturbing and offensive to you but it's my life and the life of my family. Simply don't read it. I hope that this display isn't a reflection of who you really are. Perhaps it caught you on a bad day as you stated. You should be aware that you do not come across very diplomatically. In fact you appear very intolerant and narrow minded. Perhaps you should take a deep breath and think before attacking someone next time.
Look, comparing an Aspergers child to a child with Autism really won’t get us anywhere.
But you just did that.
My Response: Sigh......
I do however, think that it’s vitally important to understand that there is a difference and a profound one, at that.
You haven’t explained that at all, provided any sources or examples to support what you’re saying. Nothing in this post demonstrates this point in any way.
My Response: Just becasue you haven't experienced something doesn't mean that others don't. What you have done here is essentially what you are asking for proof of.
We need to remember and even acknowledge these differences and not crucify those that are struggling with something you simply don’t understand. Doing so would a step towards becoming a well informed, special needs parent, and a better, fully unified Autism community.
I’m still in need here of some evidence. Who is crucifying whom? You call here for a "better, fully unified" autism community, but your entire post is about drawing a line in the sand in that community and assigning people to different sides of that line based either on their attitudes or an AS vs autism diagnosis. That is not exemplary of a "well-informed special needs parent," and it does nothing whatsoever to forming a "better, fully unified autism community." It's simply divisive.
Posted by Emily at 2:42 PM My Response: I wish you nothing but the best. I do ask that you refrain from misquoting me while on your crusade to make me conform to your way of thinking. You should know that I value and respect your opinion but not the way you present it or carry yourself. You would be so much further ahead by treating people with respect as apposed to publicly attacking them without provocation.
