This is exactly what I mean

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.

================================================

“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.

———————————————————————————————————-

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 echolalia, 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 disorderMeaning 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. 

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ejwillingham

Thanks for asking permission to strip my entire post and post it here (that would be irony). At least I quoted you in my post and stated as much.

My problem with your post–as I stated in my blog post, tweeted *to* you, and made you aware of by *posting the link in a comment on your own post*– is as follows: You take it upon yourself to determine that others should be experiencing and responding to autism the way you do. I am not taking issue with your opinions or experiences; I am taking issue with your assumptions about other people. You presume that they are "afraid" and not being honest with themselves. You imply that only people who are AS represent autism to the world. You say you don't want to offend, but when I express offense and state that others might find what you write offensive, particularly autistic people…you're offended.

I've responded to each of these statements–with your verbatim words, not "out of context"–in my post. You say that this is your experience–although you provide no details, so I can't tell what your experience is–yet you graft it onto the autism community as a "divide." You call me "intolerant" because I don't think you have a right to dictate to people how they respond to their experiences or to imply incorrectly that autistic voices are all AS voices or to imply that people who don't present autism as an endless misery are dishonest and afraid. Nowhere in my post do I demand that you feel a certain way, react a certain way, be a certain way. I don't accuse you of intellectual or emotional dishonesty.

You don't bother to respond directly to my well-considered comments because they "are ridiculous," yet you call *me* intolerant. You state that there is nothing positive about autism, even as autistic people speak out for themselves and note what is positive about themselves, yet you call me "intolerant." You don't even allow that autistic people have a voice, yet you call me intolerant. You want proof that your post was divisive? Look at the divide. It's right in front of you in your previous post, positives vs negatives, autism vs AS, and it's something *your* post engendered.

Lost_and_Tired

I didn't say anything about you taking my copyrighted post and pasting it on your blog.. You publicly attacked me and so I felt the need to address it and this was the best way.

Look, I have no issue other than the fact that you ripped apart a post that was clearly my opinion because you read it as fact. You have publicly misquoted me and are assuming that I had some type of ill intent. I don't care if you agree with me or not. I respect your right to feel any way you want. I would appreciate the same from you.

You read my post like a science report. This was me sharing my feelings and thoughts. I don't need to provide evidence.

I'm happy for you because you manage to remain more positive, however, you aren't facing the same challenges my family is. I was very clear that this was my opinion, based on my experience. What gives you the right to criticize what I feel based on what I'm living through and do so in the manner you have? You picked things apart and made them fit your agenda. You seem to have an agenda.

I welcome constructive criticism but that was not what you were offering. Believe it or not, we can actually have different experiences. Everyone's experience with Autism can be different. That doesn't make it wrong. Please try to remember that.

Again, I wish you the very best.

Kat

She quoted your blog she didn't steal your copyrighted work. Have you ever written an essay that requires you to quote a book or an article? She doesn't need your permission to do that.

Shannon Rosa

It sounds like you thought about your original post long and hard. But … does that mean that you're right? No. Even though your readers really like that post. Please consider that dedicated blog followers can be more a Greek chorus than a reliable sounding board, as important as their support is for you and your family.

I'd encourage you (and them) to try to think past your defensiveness — mull over what Emily said, and why she said it, and try not to keep reacting. Then consider how your post, as written, really is creating divisions instead of highlighting the commonalities you say you want to strive for. Your following paragraph is the critical one:

"I have noticed a lot of criticism lately aimed at parent’s [sic] 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'm not sure exactly what criticism you're referring to since you haven't cited anything — but I will say in general that people are asking for respect and acceptance, rather than whitewashing or false positivity — and that the autism parents (and autistic people) I know who advocate for awareness and acceptance do so with compassion, and on behalf of everyone with autism — what helps one, helps all.

It can be hard to have autism, it can be hard to be an autism parent. That doesn't mean you should fault folks who celebrate the positive. And we can discuss both matters honestly without declaring ourselves braver or less afraid than others. That's putting up another divider.

I recommend reading Jean Winegardner's recent post Not Even Wrong, for an example of a positive yet totally honest attitude towards autism parenting. Yes, her son is in an inclusive classroom — yet her post is inclusive of all kids with autism. http://www.stimeyland.com/2011/11/not-even-wrong…..

Again, I'd step away for a while and think this over.

Cindi

well said. thanks 🙂

Lost_and_Tired

I'm not sure why people can't post comments. They have never been closed and It seems to be working just fine.

@outoutout

It might have something to do with the mobile app. I was looking back at this entry last night on my Galaxy Tab and saw no way to post comments. However, on the website version, it's working.
My recent post outoutout: @FroggyPrinceMom Aw, that's a shame about having to return it. 🙁 But kudos to him for writing his first Santa letter!!!

Lisa E. Burkhalter o

I read your original post, could relate to parts and not to others. I respected your post as being about your experience. Loved that you questioned all the "positivity" from some in the community. Read the other bloggers post and thought she totally missed the point. She was way off base and totally attacked you. Unfortunate, but her problem.

Israa

I think this woman problem that her kids have high functional . well madam, I have one son has asperger ,the second is severely autistic and the third is normal. there are huge differences. you can not judge unless you have enough experience. no one said that it's easy to take care with asperger kids. but wait until you have severely non verbal kid to decide .

MiteB.Ed

I think you have made the point that's been dancing in my head throughout all of this. It's the verbal issues that so often make parenting and living so much different on the severe end of the spectrum. My son's autism is classic and severe, but it's the verbal issues that can turn a day from blissfully fun and engaging to a nightmare in under 2 seconds–he becomes suddenly uncomfortable and can't find a way to express that. We enter a fit of rage–literally rage–as he struggles with the sensory overload and the inability to communicate it.

That's not something my other kids, both on the spectrum but with great verbal ability, experience. They have meltdowns, too, don't get me wrong. But they're nothing compared to these. It's just not in the same universe, as Rob has stated, when my non-verbal child stems or when he has a massive nuclear-level meltdown. Most days, his meltdowns are small–and my hubby and I even joke that he's the easy one to parent by comparison. But boy when the volcano erupts, it's like the whole of Yellowstone going at once–annihilation feels imminent.

Thanks for putting a clarification on the discussion–I do think it matters. For my friends on the spectrum, with varying diagnoses, the ability to communicate verbally (sometimes only in writing) is the difference maker, as well, I'd say. How frightening must it be to know that something is wrong, to be unable to pinpoint exactly what you need to try to communicate, and then to know that the person trying to receive the message is at a loss to figure out what you're getting at. I'd have nuclear meltdown, too, if I were in that position.

So perhaps we can clarify the discussion and say that we're not talking about diagnoses so much as being different as we're talking about the groupings of abilities, symptoms (I hate that term for autism, but really that's what the PDR terms them), and other areas of related intangibles that determine what kind of experience you have.

I'm sure some of my friends think I'm all negative all of the time. (I've even been known to joke with childless colleagues that she shouldn't have kids because they cost too damn much money–this is usually around either prom or homecoming, and those who know me always know I'm kidding.) But sometimes that's the truth that comes out of your mouth when they ask how your kids are doing. Other truths exist, too, of course–they just didn't ask on a day that would elicit those from me.

@outoutout

I have to say, I really don't understand the assumption that other people must have it easier/better because their children are on the "less severe" end of the spectrum. All children are different. All parents are different. Everyone has different levels of tolerance and different challenges on their plate in addition to having an autism diagnosis. If there's one thing I've learned with all my experience talking to 'autism parents' and reading countless blogs all over the spectrum, It's that it's alllllll relative.

It sort-of reminds me of one of my favourite anecdotes from a Dear Abby column. There was once a lady who was dying of cancer and wanted her friends to visit her. However, her friends were apprehensive, because they didn't know what to say in her presence. They felt that any of their life's woes were incomparable to what she was going through. Finally, she told them: "I don't care if all you did was spill your cafe latte on your new khakis. If it's important to *you*, let's talk about it!"

Yes, let's talk about it. The bad, the ugly, and the good and wonderful too. Instead of competing for gold in the "Who Has It Worst?" Olympics, let's support each other. Goodness knows we could all use support.

Natalie McBoyle on F

Rob, I read your blog for many reasons. Mostly because I too have a child on the spectrum. But I read it because it is my personal choice to read YOUR personal view. If I didn't like your blog/view I would simply move along.

Anyone who wishes to confront you on how you personally feel isn't worth the time of day. She's had her say – and by the comments I've read she wishes to have the last word. That's her point of view.

Sadly, what is missing is acceptance. She needs to accept that's how you feel and you need to just accept that she will disagree. Misguided as she is, she's entitled to how she feels. The people who read your blog regularly get where you are coming from. Wish you and your family nothing but the best and root for you every single day.

Keep up the posts. Keep positive. Don't let the negativity win. It isn't worth it. 🙂

Lost_and_Tired

Thanks for you comment. However, I think you missed the point. I have no problem with people being positive. My point was that there are people out there attacking others because we recognize that their is or can be a negative side to Autism.
People agreed or disagree based on their own experience. My experience is as I stated. My issue was not with her opinions but rather her methods.

I was simply sharing my experience and my experience, whether you agree or not, is just that, my experience.

If anyone thinks that I am critical towards people who are more positive then I failed at making my point.

I was simply trying to show what is happening to families out their like mine and yes, it is happening.

Just because I don't post the emails that I receive doesn't mean they don't exist.

Thank you for your opinion. 🙂

Lost_and_Tired

Never said she did. I was just trying to make a point.

Cindi

(continued from above)

That is always completely uncalled for and it saddens me to see it happening. Especially in this case as I am a mom of two whose health took a debilitating turn for the worse too. Attacking the mom/wife was the lowest point of this whole thing even if it was just by a commenter.

That being said though, I thank you both for sharing your views, life, and experiences. I do agree that having the ability to see what others are going through with their own reality of Autism, Asbergers, or anything else on the spectrum or close to it helps. At least for me it has. Sharing in each others' experiences, whether good or bad, can help one not feel so alone.

Thanks for BOTH of your blogs and opinions and thanks for allowing me to share here as well.

Cindi

my response was too big for one post and I don't have a blogger or google id so I can post on both blogs like I originally intened, but this is for both of you. Thank-you for giving me a chance to speak too and for hearing me out. I appreciate it. 🙂

–Cindi

~~~~~~~~~~~~~~~~~

To be honest, I see very valid points that deserve to be heard by others coming from both of you, but sadly I also see a lot of fighting and bickering and that's causing the valuable truths, opinions, and experiences that are trying to show themselves through the two different experiences and outlooks to get almost drowned out.

I have to admit though that what bothers me the most is the name calling. That's hitting below the belt so to speak and there is never any excuse for that. This could have been a very valuable and useful debate if it hadn't taken the turn that it did. Especially when the commenters underneath the posts started attacking and going after family members.

(continued in next post)

Lost_and_Tired

Thank you everyone. I truly appreciate your support. I'm really trying to help people and my goal is never to offend anyone.

Thanks again and have a peaceful night 🙂

Nancy

This woman is not worth your time and she's really not worth mine. Your blog means so much to many of us. If it bothers her that people like me are posting and tweeting your writing like crazy, I'll start doing it triple time!

Dearest_Nikky

It's very easy to take one piece of someone's life, experience and or situation and rip it to pieces. I can say that I have been here longer then some of Rob's readers… (in fact I was probably one of the first). If he had been discussing how some study was wrong in his opinion… he would have linked it. I honestly think that anyone who "stumbled" on to this blog thanks to their RSS feed or whatever they use to find blog posts to read, would find Rob's overall tone to be negative and probably take a stance against it. But you know what? It's *his* life, his *wife's* life and most importantly it's his *kids*. Not yours, or anyone else's. What he shares is plane and simple what they are going through on a very real day to day basis. When positive things DO happen he shares them, sadly they are few and far between but he does share them.

Also – I'm NOT a parent of a special needs child (in ANY variety) but when I talk about my friends who are, you would NOT BELIEVE the negative comments *I* hear in regards to them. It angers me and it does nothing to encourage tolerance of anyone. If Rob's outlet is to get his thoughts and feelings on the climate that surrounds them, why the heck shouldn't he? You have a choice in what you read and obviously what you comment on. Next time, if this doesn't "jive" with what fits in *your* view… move along to the next blog.

Lost_and_Tired

For the record, I DO Not condone ANY name calling. No one deserves that. I ask that everyone please conduct themselves and share their thoughts and opinions in a manner that treats everyone with respect.

Jillian Meredith McC

I wish I could click on the 'LIKE' button a million times, Amy Knox! Your comment rocked my socks off. THANK YOU!

Billie Isaac on Face

……..enough said! and well said!!!

Amy Knox

There have been a rash of "autism is a gift" type posts recently on many of the blogs that I frequent. (sorry no links, find them yourself, they are everywhere) Also there is the never ending "cure" debate…Love my child as he/she is never want to change them….blah, blah, blah. Parent's of SEVERELY affected autistic children get tired of hearing this (I am one~ here's your Proof). I hate autism, I don't see any gifts in having a non verbal child who self abuses and destroys my home and sanity. I do LOVE him I just don't love his autism. I can say that, it's my opinion.(apparently Robs too?) You are entitled to yours too, however this blog doesn't seem to be the place for you to voice it if you are sniffing autism roses instead of shit filled pull-ups. Thanks for your opinion though, it's always nice to hear from ANOTHER aspie mom who thinks their "quirky and talkative" Asperger's kid is just as challenging as a non-verbal, self abusive, ritualistic severe autism child. I guess now you can talk digs at my parenting skills….which will it be "You should spank that brat" or " have you tried chelation, diet, ABA, yogurt, electro shock therapy…..or whatever flavor of the day treatment is suggested to me daily so that the lifetime I have devoted to my son's care and education can be brought into question yet again! Yes raising all kids is hard (I have three) but don't disagree with someones opinions especially when they are clearly marked as personal experience opinions especially if you aren't walking in said shoes. If you see autism as a blessing or a gift you are not living a day in my shoes!

Billie Isaac on Face

wow…she's a mean lil thing, isn't she?!!!

Lizzeann

Okay, I've read your post. More than once, actually. Each time I read it, I find myself angered more than the time before. I seriously considered responding to your post much in the same way that my husband has responded to your post here. However, in the end I decided that your reaction to one tiny piece of our lives, of our story was not worth fighting over. Nor did it fit with the message my blog is try to send, which is very different from my husband's blog.

My husband's blog is HIS blog. HIS opinions. HIS thoughts. Not your's. Not even mine. And believe me when I say there are times when I disagree with him even though I support him (as my spouse, I will ALWAYS support him); however, even I have the common sense to know that attacking him on my blog is not the way to get through to him. Sicking my "friends" on Twitter, Facebook or any other social networking site is also NOT the way to go. Hell, that's not the way to get through to ANY man.
😉

The simple fact of the matter is this A) you don't have to like what he writes because again *it's not your blog.* B) I understand that you have written a book about Biology and as such you likely have a scientific mind; however, my husband's blog is not a scientific blog. His thoughts, opinions and "findings" are not based on scientific fact; therefore he does not have to prove his beliefs with links, or any other type of proof. C) finally, If. You. Do. Not. Like. What. He. Writes. Then. Simply. Do. Not. Read. It.
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ejwillingham

I addressed what he said on MY blog. Your husband didn't confine his observations to you or your family or his own perspective, and I did not judge those. I haven't told him what to write on his own blog, although some commenters on my blog have not returned that courtesy. He judged other people's reactions and behaviors, and whether he or you realizes it, you dismissed the relevance of autistic voices. That's what I responded to. Also, if my blog is making you so angry, then Simply. Do. Not. Read. It.

I did not attack your husband. I critiqued what he wrote. I, on the other hand, have now been called intolerant, nasty, mean, an "attention whore," and something that was so ugly your husband felt obliged to censor it. He knew what he posted was an incendiary topic–he said as much in his original post. Thus, I'm a little surprised to find so much defensiveness when someone else critiques it. However, he has described a division in the autism community without demonstrating the validity of his premises for that division, and I think that when one asserts such a thing, evidence is required. That's not science, that's critical thinking. And you know what? When someone publicly posts something that they themselves acknowledge might be divisive, might invite criticism (I believe the original post references "hate mail"), it's a little disingenuous to expect that there won't be any.

Shelby

The very fact that you disagree with Rob so vehemently is evidence of division within the autism community.

damnedeitherway

Sounds like what you wrote you struck a nerve with her. What makes it all the most frustrating that as far as evidence of experiences she asks you – even if you gave it (or actually already have) – she doesn't have anything to compare it to, so why even argue? And if she wants evidence of division in the autism community, where's her evidence of unity – does she really think that there's a way to state a case – for every parent who speaks the woes – there will be another to speak the joys and they will cancel each other out? Within the Autism community, I know parents who say they can't survive without the support of other parents, parents who dropped out off the face of the Earth once their child was recovered and others who say "I can't hang around this group anymore, because I feel stigmatized for either being (too positive or too negative)." It's lousy that despite commenting on her blog, apologizing that she felt offended, when it was clearly written that intentions were not – she still continued to rant and campaign through Social Media when if she didn't like what she was reading, she could have stopped. If she felt the need to state her opinion, then blog it! But instead she not only linked to your blog post – but copied it and picked it apart.

Makes me think, I have to put a disclaimer every time I write online.

Disclaimer: This comment is intended for the sole purpose of opinion. It is not intended to provide legal or medical advice. Any resemblance to situations or persons living or dead is purely coincidental.

Wendy Letterman Hoar

I posted a comment too. Man, she cannot take the heat! Has to have the last word. Humorous actually. Lol. And she does take a tidbit of what you say and attack it without acknowledging the rest of the words. Lol. Pathetic!

Jillian

Are Asperger's and ADHD Autism? My son is severely autistic and has been diagnosed as so. He is completely non-verbal. Non-verbal children with autism are in a very different situation than those with Asperger's and ADHD. When I as a parent hear someone say that they know what I am going through because their child has Asperger's or ADHD, or even high functioning autism, it hits a nerve to be honest; they are not even in the same league. All children deserve to be treated with respect regardless of their situation, label or condition; Rob was just trying to say that in his experience Autism is very different than Asperger's and I could not agree more.

Let's not fight one another, guys. We are all adults here and everyone is entitled to their opinions.
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Lost_and_Tired

Thank you Jillian. Very well said… We are all on the same side.

Andrea Stiglet Cassi

evol she is!!!

Sonja L Andrus on Fa

whaddya know? she posted it–frazzled_mommy.

Sonja L Andrus on Fa

I posted a scathing comment, which I'm sure she'll never moderate through to the site. What a bi-atch!

Megan C Kitchen

Why your wasting time and space on someone who obviously does not live in the same world we do and is attention whoring I am not sure. I will say, you tend to not share those shining moments as often as you share the darker ones, but I have never felt you only see the bad. I agree there is a difference between asd and aspergers. I have a friend who’s son has aspergers and he is much more rigid and conformed in what he is willing to do/not do. Edit: Thanks for the support but please keep things respectful 🙂

@outoutout

Wow.. was that last line really necessary? Agree or disagree with what she said, but there's no reason to resort to namecalling.

Cindi

no need for the name calling. besides, that kind of behaviour takes away from the rest you were trying to say.

Shelby

Rob, you are right in a million ways. You always empasize that this is your expirence with autism, and how you parent, love, and advocate for your boys is always best for them. She hasnt seen your life, and the life that you live every day is the proof she is looking for and will never get. Neither of her sons have a full ASD diagnosis, as says. You advocate for differences in the autism comunity, but I dont think this woman wants to see that. Keep up all of your fighting, you are doing amazing things for your boys!

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