The Evolution of an Apology

by Jo on March 3, 2012

First it was THIS.

I took the long way, but I think I've finally arrived.

Then it was THIS.

Then THIS.

Then THIS.

Finally though, I think I get it.

I think.

Maybe it’s because I’m just a few short days away from my period….I don’t freaking know but in any case I’m over here bawling my eyes out because one  week later I think I finally get it.

I’m passionate.

I’m truthful.

I write truthfully with passion.

And I wrote something that others found offensive and I came back and said…”Who gives a damn? This is MY SPACE, SO F$%% off.”

Except.

The universe doesn’t just belong to me.

It belongs to everyone.

And what I put out there, out in this big, vast, DIVERSE universe, through this teeny tiny blog, affects others more than I gave credit for.

Trust me when I say it would be much easier to keep reading the comments of support.

But it is the comments of anger and hurt that have been keeping me up at night.

And I think that it’s got something to do with the fact that I’m a good person (despite what some may think) who knows intrinsically the difference between right and wrong; I’ve been taught my entire life that hurting others, even if you didn’t mean to, is wrong.

It’s what I teach my 8  year-old son Ian, who does not have autism.

It’s what I teach my 9-year old son Andrew who does have autism, the best way I know. And I believe that a part of him gets it.

So essentially, I’m being a big fat hypocrite. And an asshole.

Because instead of coming out and saying “I’m so sorry I hurt you,” I’ve written long-winded posts trying to excuse myself from the fact that I said something hurtful to a large group of people. Fellow human beings.

Dammit that’s just not how I choose to live my life.

I can tell you till I’m blue in the face that I didn’t mean to cause others pain, but that’s not relevant because the truth is I did.

And DAMMIT if AA hasn’t taught me a thing or two in the last almost 6 years of sobriety, one of which is taking responsibility for my actions and admitting my wrongs and the other is to make amends when necessary.

I know now.

It’s necessary.

So.

No excuses.

…………………….

I’m so sorry.

I’m sorry to all of you that felt hurt and threatened by what started out as a proud mother’s momentary fist- in-the-air kind of moment and quickly turned into all hell breaking loose.

Even though I have a right to express my feelings about autism or any other issue my kids or loved ones are up against, that doesn’t mean that I have to go around being a dick about it. (I never said my apology was going to be eloquent). I mean, at first I didn’t think I was being a dick about it, but after getting to know some people online and asking questions and getting real eye-opening answers……well, it turns out I WAS A MAJOR DICK ABOUT IT.

Some would like me to remove the post.

I’m not gonna do that.

Instead, I’m going to use it for the greater good. I’m going to keep the negative comments and the positive ones. I’m going to link to the posts that transpired on the blog after the original one. And then I’m going to hope and pray that someone might learn from my mistake.

To those of you that rallied around me when the shit hit the fan, thank you so much. I have such an amazing village. But I think we are rallying around the wrong thing. We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing. And yes, some of us choose to rally for cures and therapies and miracles. But I think that can be done in a way that isn’t going to hurt others. I think it can be done in a way that makes people look at us in awe and think, “Wow, now there is a group of people that can disagree without bullying one another.” I’m not saying you can’t think what you want about autism and the way it affects your child. I’m just saying we need to tap into that whole “words have the power to either heal or hurt” thing.

I choose to use this experience as a learning opportunity.

I choose not to make bumper sticker or t-shirts that will offend an entire group of people. People who deserve to be given respect even if I don’t see eye to eye with some of them.

I choose not to say SUCK IT AUTISM on my blog anymore. I mean, I will say it sucks in my head every once in a while, because truth be told, it’s just how I feel sometimes; I don’t want to lie to you. It really is how I feel sometimes. Not every second, not every minute, not even every day. But I do think and feel it sometimes.

But I know now what that particular phrase is capable of and while it invigorated me when I used it the other day, it brought other people to tears when they heard it. And I’ll tell ya, nothing takes the wind out of my sails like realizing just how much damage something I write can cause.

This apology comes with no strings attached.

But if you don’t mind, I’m going to keep reading and researching and trying to take it all in because there’s just so much of it I didn’t even know existed.

I may lose readers over this apology.

I may lose page views and maybe even a friend or two who thinks I’m being wishy-washy, who thinks I should come after my detractors with my fists in the air and my bullhorn pressed against my lips.

But I will regain my ability to look in the mirror and see someone I like staring back at me; someone who is fit to raise her kids to be good, kind, accepting people because she conducts herself the same way she expects them to behave.

Someone who isn’t afraid to say she F@#$ed up.

Someone who refuses to live her life as a coward cloaked in courage’s clothing.

Someone whose children can be proud of someday.

And dammit,

just for that

this whole mess was worth it.

 

If you are interested in reading more dialogue on this subject and the subject of diversity and the art of offending someone (and how it’s not really something to be proud of) please read this excellent post and the comments below it. These are individuals who really have something to say and they deserve to be heard. I’m not saying you have to agree. Just read and listen. Then come back and tell me what you think.

 

 

{ 101 comments… read them below or add one }

Rebecca March 3, 2012 at 2:54 am

You are entitled to your opinion if people don’t like it, oh well for them, they do not have the right or invitation to be hurtful or hateful. They also have a right to their opinions also. This is a diversified world and it takes all kinds to make it go around. It is just an enormous shame that adults refuse to believe and live that.

I learned that bullies come in all shapes and sizes this year, and they are even MOMS of kids with Autism, that went on a personal, threatening and violent attack on me when I disagreed with the big bully of the group.
Stand by your convictions, and your passion, a few misguided and rude people have not room in our lives or heads.
You said nothing offensive in my opinion. Autism SUCKS, it can SUCK IT, it can KICK ROCKS, JUMP OFF A CLIFF, I HATE THE WHOLE ‘EFFING DIAGNOSIS. And we all have that right, I don’t sugar coat this diagnosis and what it has done to all of our families. It’s my right to HATE AUTISM, and if you disagree with me, then don’t be my friend, but you don’t have to be hateful, threatening and mean because you disagree with someone. Another testimonial to the fact that some people are just mean from the inside out, and there is no changing them.

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Caitlin March 3, 2012 at 3:51 am

Someday Rebecca, I hope you will understand. Truly. Because you have just spectacularly missed Jo’s most beautifully articulated point. We each have to get here in our own time and our own way – this place of genuine respect and understanding for autistic people. I hope you will consider the courageous example Jo has just set.

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Rebecca March 5, 2012 at 11:15 pm

I’m sorry Caitlin you missed, my point. I love and respect my son and all those with Autism more than you could possibly fathom. The diagnosis and the the symptoms and the way this disorder hijacks perfectly wonderful children and tortures them is what I hate, and I have that right to hate the diagnosis. You should read 10 things that someone with Autism wishes you knew. I am the proud mom of 2 boys with autism and as I sit here and listen to one of them screaming for the last 30 minutes while in therapy, you can bet your sweet butt I hate Autism. Autism is torturing him. I don’t hate the person or the people with it.

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Bec March 7, 2012 at 12:43 am

Rebecca, perhaps it is the therapy that is causing him distress, not his autism?

I don’t think it hijacks people, how can it when it runs through all of our being like letters in a stick of rock? That part is the sure knowledge that every autistic adult who has learned to love and respect *themself* has, and it’s also why it makes some of us angry or sad when people choose to phrase things in a way that denies or rejects that very fundamental truth that we live with.

Lots of things have tortured me in my life but never my autism. Mostly, people who wished to make me attempt to hide my autism. Sometimes, people who just didn’t realise my differences enough to respect them or to believe me when I communicate a very urgent need, such as to get away from the source of an extremely loud noise.

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Kathryn Bjornstad-Kelly March 5, 2012 at 10:39 am

Rebecca,

I should warn you that I’m longwinded because I have a tendency to include as many words as possible to paint a clear picture of what I’m trying to say. Here goes. Autism is not separable from a person, and to hate autism is to hate all autistic people.

When I realized that, I understood for the first time what was wrong with me was not that I was autistic, but that I had wasted so much time hating myself instead of learning to love myself. I stopped being afraid of other disabled people. I stopped saying ableist things. I got involved and I’ve helped to make the world a safer place for autistic people to live in. I don’t think that makes me a horrible person, that I think your words in this comment are cruel and insensitive, just as I think Jo’s were in her previous posts.

I hope that for your sake and for your children you will learn what Jo learned before your children internalize the ableism the same way I did. Autism does not destroy a person; it’s part of who they are. Realizing your parents openly despise something that’s so much a part of you is incredibly, deeply painful for many autistic people. Jo eloquently explained how she had learned that the kind of language she was using was harmful to her children.

After years of being insulted, harassed, and threatened by curebies who reject their “changeling” children and wish for the children they never had, I believed these people would never change and that their children were doomed to be hurt the way that many of my friends hurt. Jo gave me hope that it doesn’t have to be that way. And I wonder now how many of the people who made fun of me when I protested their use of ableist words or their open hatred of autism have come to similar realizations.

I also think it’s clear from Jo’s post that the majority of the people who disagreed with her did not threaten her. I didn’t. As far as I know, none of my friends did (I’m friends with almost 200 members of the autism community on Facebook so I have a fairly large sample size). I don’t know who threatened her, and if his/her name was known I would publicly call them out because that kind of behavior is never acceptable. But I know a lot of people who were hurt by Jo’s initial post. I was one of them and I was too upset to write anything about it. We have a right to be pissed off when people say horrible things about our identity, just as we would be offended if someone insulted our religion, race, or national identity. It hurts us and Jo realized that.

To Jo, I wasn’t aware of your blog and I’m sorry for that. I mostly follow blogs written by other autistic people because I have learned over the years that most parent-authored blogs are not a safe place for m. I’ve seen parent bloggers publicly humiliate their children for pity and sympathize with other parents who murdered their disabled children. When I was about 19 I stumbled across one of these blogs and was horrified, but I was naive enough to think that a gentle explanation that this kind of language hurts autistic people would make them realize they didn’t want to hurt their children like that. I was quickly hit with pretty much every fallacy from this article http://lovenos.wordpress.com/2011/02/09/some-common-fallacies-and-rebuttals/, called horrible names, and told to shut up because my opinion didn’t matter because I was not disabled enough/too disabled/fooling people by lying about my disability/able to do several things like living on my own. The last one was really bizarre because these people assumed this about me based on the simple fact that I disagreed with them…I was quite incapable of doing some of the things. I can’t travel alone, or live independently, or work a steady job without supports. They also assumed that their children were different from me in this respect. The mother of one three-year-old nonverbal autistic child insisted to me that her child would never learn how to speak or type or self-advocate in any way, and how dare I speak for the rights of autistic people when I was Not Like Her Child (NotLikeMyChild is an in-joke among autistic people because of its frequent use in arguments). I’d never claimed to be like her child and from her description we were different in several respects, but I was shocked by her low expectations of the child. He was three! Of course he couldn’t type or change his own diapers. I didn’t learn to type or keep from wetting my bed till I was 8. Her attitude towards his chances of independent living were likely to keep him from developing in that direction, and I often think some people give their children too little credit.

Your apology was beautifully written, Jo. I’ve felt betrayed by so many autism parents so many times that I was skeptical at first, but there is no doubt in my mind that you understand why what you said was hurtful. Your love for your children shines through strongly and I think it’s wonderful that you’re leading by a good example. I’ll be following your blog from now on and I hope you’ll continue writing.

If you’re interested in reading more works written by autistic people, let me know. I have a huge list compiled from my senior thesis from college, which I wrote on the history of the neurodiversity movement. Good luck. :)

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Ariane Zurcher March 13, 2012 at 3:30 pm

I would love to read more works written by autistic people. Please send me anything you know of either to my direct email ariane@arianezurcher.com or through this site, I’ll check back from time to time. I really loved reading this comment from you. Thank you for speaking out – from a mom of one neuro-typical child and one autist, I am always trying to learn more. I do not speak for my daughter – I cannot do that, everything I do is with the hope she will one day speak for herself.

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Kathryn Bjornstad-Kelly March 15, 2012 at 8:40 am

Hi, Ariane. I actually have a long list of works that I am compiling on my blog right now of things I think people should read on the subjects of autism and disability, but the post isn’t live yet. If you check out my blog (just click on my name and it should take you there) I’ll try to have it up soon. I’ll send you a link to let you know when it’s up. I would try to list them now but I probably need to get back to an essay I was writing for work first. I opened your blog in a tab so I can add it to my reading list. :)

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Ariane Zurcher March 17, 2012 at 10:00 pm

Thank you so much Kathryn. I did find your blog shortly after reading your comment here and then leaving mine for you. Thanks so much for getting back to me. I am eager to see your list and even more eager to read what you recommend. In the meantime, congratulations on what looked like a wonderful wedding!

Britton Minor March 3, 2012 at 2:56 am

You are a remarkable person, Jo.

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Jo March 5, 2012 at 8:18 pm

Thank you darling. But I think I’m just a person who finds this whole thing remarkable.

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Rox March 3, 2012 at 3:00 am

You know what comes to mind after having read this and read through some of the comments on that last link? Trust the process.

Trust the process.

If I’m being totally honest with you (since you’ve been so totally honest with your readers here), the “proud mom to bigot” post took me aback and had me worried; if you remember, I called you immediately after having read it. I was cautious. Concerned. I didn’t leave a comment on that one. In no way did I want to presume to know how you were feeling, nor did I want to tell you what to do. You had to feel that anger/hurt and work through it. You had to go through every single one of those emotions, and every single one of those steps, to get to this very moment.

And I’m so incredibly proud of you for getting to this point. You are such a strong, gracious woman. Not only did you stand up for what you believed in, but you admitted fault even when you had good intentions. That’s admirable, Jo.

You’re a friggin’ rock star, as always.

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Kassiane March 3, 2012 at 3:29 am

Wow.

This is me, loudmouthed vaguely offensive overly defensive autistic little me, with my mouth hanging open and tears in my eyes. In a good way.

Cuz you didn’t just hear us, you listened to us and considered what we had to say. And while that shouldn’t be a rare thing, it still is. You took the road less traveled.

Hope: you gave me some. Respect: you earned a lot from me.

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Jo March 3, 2012 at 3:38 am

Well, you aren’t “autistic little me” to me. And I’m sorry I made you feel that way before.
Thanks for coming back to read my apology. I meant ever single word of it.

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Selina March 3, 2012 at 11:27 am

Ooops. Tears in my eyes now too, reading this meeting of minds between one of the autistic self-advocates I most respect in the world and you, Jo, who has also won my deep respect with your honesty and integrity.

Flappy non-personal-space-invading autistic hugs to both of you. xxx

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Jo March 5, 2012 at 8:22 pm

Thank you so much. I appreciate you stopping by and reading.

Phil Schwarz March 3, 2012 at 11:22 pm

What Kassi said.
What Emily and Rachel and so many others have said in these comments.
+1, times a very big number.

Jo, thank you for listening. And thinking things through. And “coming down where you ought to be”, as the Shaker song says.

You wrote:
“But I think we are rallying around the wrong thing. We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing.”

Yes. You get it.

Despite the impression you might have come away with from the first encounter in your evolution, autistic self-advocates have been saying exactly that for at least twenty years. Jim Sinclair’s landmark essay “Don’t Mourn For Us”, to which Lydia Brown provides a link in her comment on this page, was written in 1992. Back then, many parents mourned unnecessarily; today, many more get angry unnecessarily than mourn. But the message from the self-advocates, and the invitation to collaborate rather than quarrel, is the same, and it is still relevant.

You’ll know that you’ve *really* arrived when it feels natural for you to say “SUCK IT, ILLITERACY”, or “SUCK IT, SENSORY DISTRESS”, or “SUCK IT, GI DISTRESS”, or “SUCK IT, IMPULSIVITY”, or “SUCK IT, EXECUTIVE FUNCTION DEFICITS” — rather than “SUCK IT, AUTISM”. Because then, you’ll be thinking about autism like many an autistic person does: in parts. Autism is both disability and difference — many of each. Work on the *parts* — identify each disabling factor in your or your child’s way, and work to mitigate *that disabling factor* — but also, identify each *difference* that does no particular harm, and work to *protect* and to get *respect* for those differences from the world. Autism is more than just the disability. It’s an integral part of what makes an autistic person who they are — the good as well as the bad.

As your child grows older, the stuff that self-advocates are fighting for will become more and more important and relevant in your own lives. Becoming mutual allies will make more and more sense — but I suspect that that has already started, with the hard emotional work you’ve done in this evolution. The best thing you can do is to help others who trust and value your judgement to see the same light that you have seen. But you’re pretty good at doing that already, I hear :-) .

True AFGOs are hard, but very much worth it.

Welcome. And sorry for the bumps in the road getting here.

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Jo March 5, 2012 at 8:23 pm

Hi Phil:
Every bump was worth it to bring me to this place. It’s not just the community that is healing, I’m healing as well. And I know this will only make me a stronger mother, and a more useful and dedicated advocate for him and others on the spectrum. And that, I believe, is my deeper calling.

I appreciate the thoughts and the insight.

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Elise Ronan March 3, 2012 at 3:03 am

You can apologize all you want you didnt say anything wrong and neither did any of us parents who hate autism. Dont get sucked into the bull crap that there is no suh thing as normal. Guess what there are ways to act, function, and be appropirate. There is also a huge difference between racism, antisemitism and this ableism bull. Otherwise capable people were denied rights and hated because of skin color or religion that is not what happens with the disabled. There are just somethings the isabled cannot do..it is not discrimination it is reality and it is not ableism to say so.You can buy into it all you want but he truth of the matter is , is that all society owe someone with a disability is a level playing field nothing else.

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MD March 3, 2012 at 1:56 pm

If you honestly don’t think the disabled are hated and denied rights because of their disability, then I have a bridge to sell you.

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Elise Ronan March 4, 2012 at 10:07 pm

I know better than u that disabled are discriminated against. But normal is normal and there is appropriateness and appropriateness. If u think there is not i have a bridge to sell u.

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Becca March 5, 2012 at 1:22 am

You don’t know better than anybody. Neither are you the arbiter of what is normal, or appropriate. It’s only your opinions, which are worth no more than any other human being’s.

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Phil Schwarz March 4, 2012 at 12:27 am

Elise, I hope you and the other parents who “hate autism” eventually realize that your “hating autism” isn’t helping your child any. And that you don’t have to “hate autism” to succeed in mitigating the disabilities your child faces. If you drown in your own bile, you won’t be there for your child.

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Elise Ronan March 4, 2012 at 10:10 pm

First off your selfrighteousness is insulting, condescending and shows your ignorance. To assume i cant do for my children because i hate autism shows u have o idea what parenting is all about. You have no idea who i am and what has been done nd accomplished on bhalf of them. Your attitude is why i dont bother with the neurodiversity crowd because u just dont get it and u nver will.

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Carlee December 2, 2013 at 12:37 am

Elise – Autism cannot be separated from your children. Autism is part of them. By saying that you hate autism you are saying that you hate your kids — because your sons and their autism are one and the same. When you say you hate autism, you’re basically saying that you hate your sons — that what you REALLY want is different, non-autistic sons.

An imperfect analogy: Suzy belongs to and believes in a faith that says homosexuality is a sin and a choice. Suzy’s son Bob tells his mom he’s gay. Suzy tells her son that she will pray for him to become heterosexual and that she loves him (her son Bob) but hates the “sin” (Bob being gay). Do you think Bob feels his mom loves him? Or do you think Bob feels his mom is rejecting him for who he is — since, as far as Bob is concerned, he’s always known he was gay and feels it is an immutable part of himself. There’s an excellent chance that when Suzy tells non she loves him but hates his “sin”, what bob hears is that his mom doesn’t love him and would prefer a completely different, heterosexual son instead!

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Zhu Que March 4, 2012 at 12:03 pm

So, we don’t even warrant civility? I don’t even think it’s civil to turn your head and not get involved, as opposed to hostility, so is that all we deserve? Bullying and turned, uncompassionate heads? Is bullying all we deserve? There are SUBTLE ways of keeping people down, you know. Making a person not go in for a job interview because you damaged their view of their self worth is a way of keeping a person down. I HOPE that was never your intent, as that IS entirely possible.

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Elise Ronan March 4, 2012 at 10:18 pm

No that is not what i am saying at all. There are requirements for jobs and persons with disabilities cannot do some jobs:persons who cant read and understnd social ituations cannot be police officers, divorce medaiators etc; those who do not have 20/20 vision cannot be airline plots; those ith seizures cannot be firefighters, navy seals etc. u need to find what you are good at and proceed but society has reaons for their requirements for jobs. Its part of dealing with reality and instead of feeling sorry for yourself or feeling society owes u something pull yourself together an figure out a way to embrace your passion in a way you can b uccessful.

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AspieSide March 4, 2012 at 1:16 pm

Thank you! I had read one of your posts the other day and thought, “oh she almost gets it, but not quite” I didn’t comment because I thought what was the point. I am so glad & so thrilled to read this post because yes, now you do get it :) So glad because I knew you were a decent person and I really wanted to follow you on twitter but couldn’t until now. Not that you care about one more follower but I would be glad to get to know you better after all of this. Have a great day.

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Melissa March 3, 2012 at 3:13 am

You just gained a reader with this apology =)

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jillsmo March 3, 2012 at 3:15 am

You are brave and strong and honest and awesome. <3

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Rachel March 3, 2012 at 3:16 am

Thank you for showing so much courage and grace, Jo. Your post shows the power of civil and honest conversation.

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Jo March 3, 2012 at 3:29 am

You know what I feel Rachel? I feel free. Just free. I tried to wear shoes that didn’t fit me this past week and now I just feel so freaking free.
Thanks again for your post and insight.

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Rachel March 3, 2012 at 3:50 am

Feeling free — it’s the best feeling in the world, isn’t it? Kudos to you!

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Shazza March 3, 2012 at 3:25 am

Jo, I’ve been following this ‘drama’ over the last week without commenting. It’s a complicated emotional process we go through when asked to put down our defences, which are well honed necessarily, and hear the hurts of others. It’s an even more courageous gesture to then apologise unreservedly. A remarkable act of humility that I sincerely hope you are given credit for by those who sought to dismiss you so readily.

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Emily Willingham March 3, 2012 at 3:25 am

You are absolutely one of my heroes tonight. That’s all I can say.

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Bec March 3, 2012 at 3:33 am

Elise, ‘the disabled’ are every bit as diverse a group of people as any other minority group. We’re around about one seventh of the world’s population. And yes, we are denied rights just because we’re disabled, all the time. We are turned away for jobs we’re more than qualified for because of how we move or speak, or the ways we access information. We’re locked away in huge institutions to ‘manage’ us where we’re denied pretty much every conceivable human right. We’re banned from our communities’ schools, shops, healthcare facilities, leisure spaces, just because of the fundamental facts of the ways in which we differ from a mythical norm.

How can we have a ‘level playing field’ without basic, fundamental respect? Without an acknowledgement that in vast numbers we ARE considered ‘less than’ because we are disabled? When someone like you writes off the discrimination that blights our lives, TAKES our lives, in our thousands, as ‘bull’ because it’s not convenient for you to face up to?

I’m appalled by your post and I hope to God(s) that I am never so unfortunate as to have to depend on someone like you, as a support person or a colleague.

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Elise Ronan March 4, 2012 at 10:24 pm

It is too bad that u feel so sorry for yourself. It seems to me that instead of working at trying to accomplish your goals in life you want o blame others for problems. Discrimination exists.. You bet it does. Pick yourself up and prove their ignorance wrong.
Im appalled that you think he world owes you more than a level playing field. U want equality and respect but think u r owed more than acommodations and a chance to prove yourself.

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Becca March 5, 2012 at 1:07 am

This will be my last reply to you – my life is quite literally too short to waste time interacting with someone who has already decided that they don’t wish to respect me as a fellow human being.

I do not feel sorry for myself, I don’t know why you think I do, but I think you’ve probably chosen to use that phrase to insult me and dismiss my experiences and my voice as self-pity rather than the rather fundamental truths that they are.

You don’t know what I’m doing ‘to accomplish my goals’, because I haven’t told you. Why do you think that you know? How arrogant, to assume that I don’t work towards my dreams in all the ways available to me, just as all people do.

Why should I prove people wrong? I have nothing to prove, I’m not a performing circus animal here to show the non-disabled world I can ‘do it against all the odds’. I’m not interested in being turned into a story of struggle against the adversity of disability, because disability is the barriers I experience due to the discriminatory attitudes of those with power in society.

Why do you think it’s unreasonable, to demand that it be recognised that we are discriminated against as a minority group like any other? To have our struggles seen in their true context, against a background of decades of oppression, of active opposition against every attempt for us to achieve equality of opportunity? How could I possibly have a ‘chance to prove myself’ in the absence of that basic respect for my humanity and acknowledgement of what I as an individual and we as a community have come through and what we continue to face?

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Carlee December 2, 2013 at 12:51 am

Elise – What’s fascinating is that you dismiss the views/perspectives of actual people with disabilities and feel the need to argue with their *perception* of the world, you simultaneously do so very, very much for your now-adult sons with autism that you infantilized them — you picked their college/grad school classes, hired a para to accompany your sons to their college and grad school (!!) classes and accompany your sons to class (as their para!!) if the hired para is unable to attend, you run interference between your sons and their professors, heck, you forbade your ADULT college student son from going on a class field trip to see a play in New York City since you felt her be “overwhelmed”. If an adult cannot pick his own college classes, be trusted to advocate for himself as needed (I’m dyslexic myself and I know for a fact that my college was required to provide accommodations for students with special needs — I asked for and was granted a note-taker in many of my classes; an ex-boyfriend was deaf and our college was required to provide the accommodations he required, such as a sign language interpreter for certain lectures), cannot be trusted to go on a college-level field trip with his classmates, well, you’ve denied your sons the OPPORTUNITY to become competent. Your sons sounds like very smart young men — that you’ve coddled to the point of denying them the opportunity to BECOME competent (or to find their limits).

If a graduate student cannot be trusted to attend a graduate-level class unaccompanied by a para that his mommy arranged (the student arranging his own para or support person through the college is completely different; that’s said student demonstrating his ability to advocate for himself!) of mommy herself, well, he probably shouldn’t be there.

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Pia March 3, 2012 at 3:38 am

Jo-
We are all entitled to grow and learn over time. No one is ever in the same place at the same time, and our lives are not static things but fluid motion of change. To change one’s perspective, to take a new view, and to start to look at the world a little differently is tremendously difficult. I am joyful for you as you take these steps. It will be too quick for some, and not quick enough for others… as you have already noticed, no doubt. But wherever and however you travel, it is your journey and I am glad to see that you have been willing to take these steps. I myself struggle with the same things…. and I struggle and am fearful of what and how my thoughts and actions might influence my son and the greater world. But I do my best, as we all do… I believe that when we know better, we do better. Don’t be afraid to live and learn these lessons… they are what make us rich human beings.

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Britton Minor March 3, 2012 at 3:27 pm

So beautifully articulated, Pia.

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J.J. Whipple March 3, 2012 at 3:39 am

My name is JJ and I have Kanners. I won’t read any of the links because from what I’ve heard it will be triggering and I don’t want that. However…

It takes a lot of courage to admit to something so large. I wouldn’t call it “wishy-washy”.

I’ve been walked on, discounted, abused and ignored my whole life. In a word.. Marginalized.

I’ve never received an apology before from anyone who was terribly nasty to me. Now I can say I have. It makes me feel good to know that people still have the capacity for humanity and logical thought :) I really appreciate what you’ve done and I have a lot of respect (that may have been lost) for people that can truly and honestly admit when they’re wrong. It doesn’t erase the hurt by any means but it does say something about their character, that despite fallout from whatever disaster befell them from their original thought(s), they realized they had made a terrible..terrible mistake. I think your son will respect you more when you tell him about this someday.

Thank you.

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Kassiane March 3, 2012 at 3:42 am

Oh crap I fail at commentation. What I posted wasnt in response to whoever it landed in response to. It was 100% “Today Jo Ashline Reminded Me Why I Do What I Do”.

Much respect.

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Bec March 3, 2012 at 3:44 am

I forgot to add the most important bit of all, which is this:
Jo, if you’re reading, I just wanted to express my profound respect for you and how kind, thoughtful and careful you have been as this dialogue has evolved.

(with thanks to those who reminded me to put it here after I said it first on Facebook)

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Lucy March 3, 2012 at 3:46 am

To Elise’s point, ableism is not about things disabled people cannot do because of their disabilities. It’s about things they cannot do because of erroneous assumptions about disability on the part of people who haven’t experienced it.

Jo, I’ve followed the discussions that started with your blog post and admire your response today. I have no argument with parents expressing the struggles of dealing with autism, but as others have said, I hope that can be done in a way that isn’t painful for autistic people. My 15-year-old currently has a hard time accepting and liking who he is, despite his many strengths. I’m grateful the neurodiversity movement exists and hope it can help him be more at peace with himself. Surely any child or teen who is growing up with autism, as well as adults who have struggled for decades, share this need. We know from mountains of evidence how damaging it is to take on the belief that some intrinsic part of yourself is inferior, whether that’s race, sex, nationality, biological parentage, sexuality, etc. We all need sources of pride and self-belief, and neurodiversity offers that to people on the spectrum. This includes the nonspeaking autistic self-advocates who are on board with it too. I hope every parent who deals with the challenges of autism can be comforted by knowing that it may help their own child one day.

I understand the frustrations of feeling misunderstood. I agree that some criticisms are perhaps too readily applied at times. Still, you came back from all that. I hope you feel you made some friends today and didn’t lose any others in the process.

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Elise Ronan March 4, 2012 at 10:33 pm

Lucy thank you for the explanation of ableism. I have been given so many deinitions over time it is hard to know which is correct. But i still hold with my original idea… Being called an ableist because u understand that your child with epilepsy cannot go to West Point, the reaons behind it and u agree, is insulting. I simply support my children, get them where thy need to go and learn to fight where it does them the most good.i also teach them o be gron ups, not whine, not use their autism as an excuse if they dont o well. If they want something hy need to figure out how it needs to b done. Thas the real world.

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Lydia Brown March 3, 2012 at 3:48 am

Dear Jo,
I’m Autistic. Thank you for having the courage to write this. I wish more parents of children on the spectrum were willing to listen to Autistic adults and pay attention to what we have to say. So often it goes unheard, and sometimes, even when it is heard, we face anger and hate for no real reason other than expressing what might be unpopular opinions, even if what we wrote was respectful to begin with. Thank you for listening and paying attention.

For those who are upset at Jo for writing this,
Please take a few minutes to read this, http://www.autreat.com/dont_mourn.html . It was written by an Autistic person.

Blessings and peace,
Lydia

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Alicia March 3, 2012 at 3:49 am

This is an amazing post. Thank you. I was saddened by those posts, not because I think it was written by a bad person, not because I disagreed, but because it made me feel hated even if not all of me but the part of me that is never going to be what people expect and saddened because the feelings of those that were hurt were apparently not important, to come here and see that you care means a lot to me and others, I’m used to hatred but this is unexpected and beautiful.

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Christine March 3, 2012 at 8:29 pm

That is beautiful.

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Sharon daVanport March 3, 2012 at 3:54 am

Appreciated this post very much, Jo! What an amazing amount of humility, dignity, and courage you have shown. You don’t have to wait for your children to be proud of you “someday” it can be everyday, like today!

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floor time lite mama March 3, 2012 at 4:09 am

you are amazing

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Stimey March 3, 2012 at 4:16 am

I have mad respect for you for posting this, Jo.

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Catharine Alvarez March 3, 2012 at 4:20 am

“It isn’t given to us to know those rare moments when people are wide open and the lightest touch can wither or heal.” ~ F. Scott Fitzgerald

You made yourself very vulnerable, Jo. I respect your honesty and courage! Thank you for writing your blog.

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Sharon Miller March 3, 2012 at 4:21 am

As a mother with undiagnosed Aspergers who has a son with Aspergers I have a different journey than yours, but in many ways I experience many of the same frustrations. Except with him the things that make me want to bash my head against the wall (but I don’t) are the things he does that I understand, that come from the same places as my own obsessions and lack of social awareness. And the ways I was told growing up that I was ‘bothering people’ and ‘talking not much’ and ‘being inappropriate’….I carry that weight with me everyday so much that I no longer enjoy when he starts chit-chatting with the grocery checker…b/c he might talk a little *too* much, or he might cross the boundary a little *too* much…and I have to apologize when I get that “look” – that painful look that tells me she knows he’s not “normal.” And I have to pull him away b/c she doesn’t know what to do….and I don’t either. Instead of enjoying that moment where all he wanted was to share and connect.

But then other times people GET it. And they roll with it….they ask him ahead of time if he would like something instead of forcing it on him and then complaining when he has a meltdown b/c he couldn’t handle the change. Sometimes some doctors GET it….and instead of acting put out or annoyed at his outbursts and his grabbing at equipment…will smile, ignore the inappropriate words and will talk to him about the equipment and what it does and show him how to use the equipment to look in ears and eyes and will tell him “I bet you want to be a doctor.” Even if it’s not possible…it’s that moment of connection with his impulses and interests and positive support of his behavior (instead of constant correction for what doesn’t ‘fit in.’). It’s a moment where we all are beaming and feel acceptable. I did not say ‘accepted’ – I said ‘acceptable.’ We don’t often feel acceptable.

I understand the pain that brought on your first post – and I understood your proud fist to the universe too. Your son had a break-through moment. You saw the potential for him to break through to the verbal world to communicate. I too have a love-hate relationship with all of this….almost everyday. Somedays I communicate well with my neighbors – other times I hope they forgive me as an eccentric.

In general – I try to differentiate between the kinds of ‘autism’ – I believe there is the kind that is the neurological difference, the different mental wiring that can bring great gifts. I know this first hand – and am thankful to have a job where my digital/analytical skills make me feel like a rock star. But there is the other side….the side of brain-fog and fear, of days where I can’t read people and nothing comes out of my mouth right. As I get older I’ve been able to attribute some of these things to diet and notice the change that a gluten/casein-free diet has made. I also notice the changes that probiotics make. We have neurotransmitters in our gut….the connection between autism symptoms and intestinal problems is real…..but it is only one aspect of the Autism puzzle.

I would never want to lose the part that gives us our unique strengths and view of the world….but I would love to say to the ‘brain fog’ and unwanted disconnection that happens when I eat something with too much Holstein milk (A1) cheese…..to go ‘suck it.’ But mostly I work on getting proper A2 beta-caseins instead and avoid gluten contamination. I also love learning and observing social scripts for certain social contexts where I cannot just ‘roll with’ and ‘pick up’ everyone’s nuances. Because these are important coping skills.

But re: the nutritional stuff – my interest in all that is not to ‘cure’ autism or change who I am. It’s to make me a stronger atypical person. It’s like the difference between most people before they drink their coffee and after. They are still who they are….just clearer. This is all part of a very complicated picture that needs increased dialogue, but all of us need to be kind. We only know the smallest tip of the ice berg and we’re fighting so hard to push each other off that tip. We all want to communicate and connect…we might not all speak the same language but we can work on meeting each other part-way.

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Christine March 3, 2012 at 8:46 pm

I appreciate this post. We all want to be acceptable. It breaks my heart to think that anything I might say or do would make my son feel unacceptable. It is often hard for me to balance the joy I feel in my son with my desire to protect him from what other people might think. I am struggling so very hard to adopt his life of FEELING less embarassed. When people ask if we plan to get in the elevator now, I can usually look them right in the eye and say, ” No we just like pushing the buttons.” :)

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Andrew Dell'Antonio March 3, 2012 at 4:22 am

Jo – this is one of the most powerful posts I have ever read. THANK you. As the parent of an autistic child who used to be very invested in thinking about cures and now is much more invested in helping be an ally for my daughter and those who truly speak from the perspective of disability, I know the moments of frustration and the hopes that are proffered by proponents of “cure” first-hand. I’ve been there, I’ve pursued some of those “cure” options, those with whom I walked that path were (mostly, I think) dedicated and well-meaning. But in the end, I am now convinced that, as you so eloquently put it, “We need to rally for mutual respect. We need to rally for diversity. We need to rally for healing.”

As a teacher, I have always most deeply respected those who have truly learned by embracing the discomfort of being wrong. Because that is where insight really lies: opening our minds and letting other people in. I salute and admire you: your gesture of learning is more public, more drastic, and more vulnerable than my own. Thank you for being such a wondrous model for your children, and for all of us who can always gain from being wrong and really learning from the experience.

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chavisory March 3, 2012 at 4:32 am

Oh wow, thank you for this. It sort of made my day.

To a brighter world!

(And let’s not even talk about what my period does to my emotional thinking. It’s not good. Not good at all. In my book you’re doubly forgiven….)

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Zoe March 3, 2012 at 7:56 am

Hi Jo,

This post made me cry. I’m autistic and I feel deeply hurt when I see people posting about how they “hate autism,” but I chose to not even comment on your original post because I worried that I would only get a hurtful, defensive response.

I am stunned and moved by this post. I’ve never seen something like this happen before. This is making me feel a feeling that I can’t think of the word for right now, but it’s a good and profound feeling.

Okay here’s my attempt at describing the feeling: Before I read this I felt [bad feeling, feeling like nothing will ever change, feeling like the person pushing the ginormous rock up the hill]. Now I feel [good feeling, feeling like everything has stopped because of how unexpected something like this is, feeling some thoughts start to shift around because of how everything has stopped].

I’m not sure how much sense that makes but… thank you.

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Lemmie March 3, 2012 at 9:58 am

I hadn’t seen your original posts until I was shown the link to this page.

Every parent wants the best for their child, the most independence, as much freedom to make choices as they are capable of. I didn’t read any of this as an insult to me or anybody else on the Spectrum; just as a Mum screaming into the wind on a particularly bad day, just like any Mum, whether their child is on the Spectrum or NT. You could just as easily have posted ‘Suck it Life’ if your child wasn’t on the Spectrum, and the message and intent would have been the same. All parents have good days and bad days no matter how ‘perfect’ their child is. No child goes from birth to adulthood without causing parents no end of frustration at one time or another. It’s the nature of parenthood. And sometimes parents need to vent.

I respect your apology to those who were offended, but I hope you aren’t retracting your original thought. It was how you felt at the time. It was honest, and it was valid.

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Brenda (mamabegood) March 3, 2012 at 12:06 pm

Hi, Jo – we met over on Rachel’s amazing post. Wow. What amazing work you’ve done in the past few days. The process that you’ve gone through was *hard* work, I mean, hard. Some people are too fearful to do this kind of personal growth, *much less* do it so publicly. You deserve credit for doing the hard work and for sharing it so publicly. G-d knows that wasn’t easy.

When you get down the road a bit and start feeling the love and the peace that will come with this growth, I’d like to ask a favor. Do you think you could be more gentle with yourself? To stop calling yourself names, like a**hole and d*ck? You don’t deserve that. You are not a d*ck. You are not an a**hole. You make mistakes. Just like everyone. Language is important, for everyone. It affects how we treat ourselves and how we treat others. Including our kids and their challenges.

You done good, Jo. Thank you for opening your heart.

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marie March 3, 2012 at 12:41 pm

I just read your original comments for the first time and I have to say I agree 100%. I love my son with autism. I think he’s the greatest kid and so funny, and smarter than my three by children in some ways. Yes, our lives are made much more interesting by autism. Oh the anecdotes we all have. But I agree with everything in your original post.

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Becca March 3, 2012 at 1:31 pm

Jo,

I’ve also been following this and have such great admiration for what you did here. I want to add that how we frame things inside our own heads affects our own behavior. In other words, when I am below the line (overtired, ill, PMS-ing, generally discouraged) I tend to frame my son’s disabilities in the “autism sucks” way and it truly makes me feel MORE anxious, discouraged, and stressed out. When I start thinking that way, it is a red flag — a warning that I am not at my best. It has nothing at all to do with what is going on with my son, and everything to do with my own attitude and health. I stopped reading blogs of the “autism sucks” variety a few years ago to spare myself the anxiety and the stress those caused me. It made a huge difference to opt out of that anger.

In other words, I hope that changing your thinking about this gives *you* some peace of mind, as it does me. I can do so much more for my son when I am not feeling embattled.

Becca

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aspinthegarden March 3, 2012 at 1:55 pm

thank you for listening to us on the other side of the divide. you will find the hands on this side, when they reach out, have a lot of supporting strength in their grip… both for you and for your child. i hope we can help.

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MarsupialMama March 3, 2012 at 3:05 pm

I have mostly been cautiously watching this ongoing debate from afar. It’s been difficult for me, because in the past I have said similar things to what you are now apologizing for, without really realizing the effect those words would have, or how they would be construed by people on the Spectrum.

Like you, I’ve had to eat humble pie and totally re-think my stance. I was, however, afforded the privilege of this learning experience happening quite privately, without a whole shit-storm taking over the internet. I feel for you, I really do. I get where you’re coming from, life as a parent can be hard, never mind as a parent of kids with extra needs. You just wanted to celebrate your son’s success and that’s something I think we all can understand. Yes the expression of it turned out to hurt some people, but I believe you when you say your intentions have been good. I believe you when you say that deep down you’re a good person.

I believe it because of this amazing apology and the fact that you’re not going to delete the old post, but will keep it there for “posterity”. Your apology was beautiful and eloquent. And I don’t believe that you will lose readers over this. I’ve already seen you gain some in the above comments, and you have gained me as well. Because what you did today was to show courage. To show that you’re willing to listen and learn. Which is all any of us can really do. That’s why I am so grateful to the NeuroDiverse movement, how much they teach me and help me become a better mother to my children. Being a mother is hard enough without having to factor in a whole different perspective in our child which we may or may not be privileged to “get”.

I applaud you. And thank you for this post.

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Leah Kelley March 3, 2012 at 5:34 pm

I have noticed that when I am open to it… the things that go sideways on me can be the things that lead me to my greatest learning. You have not only listened to perspectives that deserve to be heard and honoured, but you have also shared your process, and captured the shift and changes in your own perspective in a way that can provide insight for others.

I may not have agreed with everything you have written, but I love the way you have used this experience to ask questions and be so open to understanding perspectives that are new to you.

Truly remarkable!
Thank you

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Lucy March 3, 2012 at 5:38 pm

Some great comments here. Marsupial Mama’s post just struck me as particularly lovely, but many of them are.

As for the shit storm taking over the internet — yes, but hey, contrast with the cowboy dad who shot his daughter’s laptop! This is private in comparison.

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Christine March 3, 2012 at 8:08 pm

I read your “Suck it” post and your “Suck it Apology” yesterday and have been thinking about it ever since. I should start by admitting my bias. I am writing this from within my mHBOT and later today I have plans to boil a whole pastured chicken down to broth. With this said, I would not change one word in your “Suck it” post. Dr Sid Baker estimates there may be as many as 200 types of “autism” with 25 subtypes. Clearly, any individual who can read your blog and feel slighted, does not have the same type of autism that your son does. If my son–who is 9 and can read–were to read your post, comprehend its meaning, and feel insulted, I would do a cartwheel of joy (as big picture comprehension and social feelings such as feelings of insult are not skills he currently has). I appreciate the fact that you are kind enough in your heart to apologize for your truth causing anyone pain. However, your truth is my truth. I not only have no plan to apologize to anyone for the fact that I fight tooth and nail to improve my son’s quality of life each and every day (to the exclusion of most everything else that my life was prior to autism 7 years ago) but I will freely admit that I have been telling “autism” to kiss my ass for years. I do NOT agree that my son’s autism symptoms are any more apart of who “he is” than vomitting is when he had the stomach flu. So I embrace it without any remorse whatsoever that my son is losing his “identity”: He regained speech at 2, stopped being consumed by stimming at age 4, ate non pureed foods at age 4.5,had solid stools and muscle tone at age 5, slept through the night–with anti seizure meds– for the first time at age 7, he started calling me “mom” at age 8 (rather than just as a label). “Autism” is not who my son is. It does not define him and despite its best efforts, it will never extinguish his spirit.

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passionlessDrone March 7, 2012 at 6:21 pm

“Autism” is not who my son is. It does not define him and despite its best efforts, it will never extinguish his spirit.

Yes.

- pD

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Jayn March 3, 2012 at 9:39 pm

*hugs*

This was great to read. It is really easy sometimes to say very offensive things, because we don’t really realize the full implications of what we’re saying. It’s something we all do at one point or another. The important thing, though, is that when those moments are pointed out to us as being offensive, we listen to others and try to understand their side. You’ve done that, and it’s been truly wonderful to see.

For those of you who have said that you hate autism…I’m not going to say that aspects of it don’t suck, because undoubtedly they do. It does make things harder, either because of things intrinsic to the condition or because of the ways that autistic ways of being differ from ‘normal’ ways of being. And we’re all entitled to being frustrated about those things, and to express those frustrations in appropriate ways. That said, so, so much of the struggles I’ve gone through in life has been because of people refusing to understand me (and to some extent, me not understanding myself as I measured myself again ‘normal’ people). There is a place for therapy and treatment, but what’s more important is that people understand and respect our differences and work with us rather than insisting we act in ways that are unnatural to us. The ONE thing that I’ve always desired is to be respected for who I am, the respect that is due to me as a human, for people to reach out to me the way I’m always reaching out to them, and no therapy or treatment can give me that.

Those of you who see autism as only an enemy, something to be eradicated, as something to fix rather than something to accommodate…you’re adding to the suffering that all of us on the spectrum have to endure.

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Tammy Karn March 3, 2012 at 10:07 pm

I appreciate your openess to consider someone else’s feelings and point of view.

Read this: http://networkedblogs.com/ulgys then tell me that this mom can’t say autism sucks.

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Gayle March 3, 2012 at 10:36 pm

Wow! Thanks for being so honest, human, and listening and opening your heart and mind. Wow!

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Gavin Bollard March 3, 2012 at 10:41 pm

Jo,

It takes a special type of person with a special type of courage to not only say that they’re sorry but to also work to understand why something was wrong and how it could hurt. You’ve done an amazing thing backing down from such a position and you have earned my respect and admiration (not that you didn’t already have it before).

I also applaud the idea of keeping those posts up there as a learning experience. You’re not the only one to have learned a lot from this. I certainly have and I gather that a large part of the community has too.

Technically, as several people have pointed out, there’s nothing wrong with saying something on your own blog – it’s your own space after all. The problem begins when it is published elsewhere (as your first post was).

I don’t think that anyone doubts that you made all of those claims out of love. The problem is that while it’s easy to say that it’s autism that’s the problem (at it’s certainly at the root of the issue), the actual issues you face are different from day to day. It doesn’t sound as good to say “suck it toilet training” or “suck it reading” but it’s more politically correct and less offensive to people.

In any case, there are plenty of people with autism who CAN read, so it’s not necessarily a limiting factor.

I look forward to more posts from you where we hear about Andrew breaking other barriers. Don’t assume that he “can’t”. It’s harder for him but with someone like you behind him he CAN and he WILL.

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Phil Schwarz March 5, 2012 at 6:11 am

What Gavin said, in his last paragraph.
At each new breakthrough, each new accomplishment, better even than a yell of “suck it” *anything*, will be a yell of “GO ANDREW!” — which will generate a smile on a whole lot more faces across the ‘Net than before this whole evolution. And most importantly, it’ll mean a whole lot more to Andrew himself. When my Jeremy was little he thrived on high fives and “Yay Jeremy!”s.

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Melissa Parent March 3, 2012 at 11:18 pm

I understand why you apologized.

Even if we didn’t – and couldn’t – anticipate the consequences of something we have done, if something negative occurred as a result, as the person who started the process that led to that, we have an obligation to apologize – and to avoid doing it again. I get that. I really do. I even had to drill it into my 10-year-old’s head earlier this week as he kept saying “But it’s not MY fault she’s upset… I didn’t do anything to hurt her, that’s not what I meant at all!” about a miffed friend.

If we value people, we put aside all of those objections – even if they are utterly true – and we try to make sure no one gets hurt.

So what I want to ask you is, has anyone apologized to YOU?

Have any of those people who were so willing to come screaming out of the woodwork to accuse you of all manner of incredibly heinous things, in any number of terribly painful ways, owned THAT? Has anyone said “Hey, you know what? I’m sorry. I realize when you use the word ‘autism’, it is not, in fact, a synonym for my name. It didn’t mean ME. MANY people are autistic, and they all have different battles to fight. I apologize for assuming that the way I do it was the way you – or anyone else – should do it, and I particularly apologize for making you hurt when what you were trying to do was celebrate a success.”

Because if not, I think maybe you want to hold off on your resolve to never say “SUCK IT, AUTISM” again, until the folks who were offended can promise never to read those words as “SUCK IT, QUENTIN IN BALTIMORE WITH AUTISM*” when it very clearly does not say that. (*I made that up. If there’s a Quentin in Baltimore with autism reading this, I don’t mean you.)

Just my opinion.

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Rachel March 4, 2012 at 12:53 am

Melissa,

I don’t know whether the people who said awful things to and about Jo have apologized. However, if you read the dialogue that transpired in response to my post, you will see that a number of autistic people and autism parents said that people calling Jo names, causing hurt, and hurling accusations isn’t right and doesn’t move things forward. I don’t feel that any of us should apologize on behalf of others, for something we haven’t done ourselves, but I do think that we have a responsibility to call out destructive words, no matter who they come from. A number of us have done that, in this instance and in other similar instances. And I think that the measure of an ethical person is that he or she apologizes regardless of whether other parties do, so I have nothing but respect for the fact that Jo has taken care of her side of things and left others to decide whether they’ll do the same.

I think it’s quite clear that Jo was not referring to a specific autistic person, so this isn’t about mere personal offense. It’s about the potential for language to harm all of us, regardless of where we may be on the neurological spectrum.

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Melissa Parent March 4, 2012 at 4:33 am

Agreed, Rachel, and hence why I said I understood – I do! But that potential for harm goes both ways, and often those who take umbrage at something fail to realize they are doing – in response – something just as bad, and often worse. (For instance, Jo meant no disrespect, but some folks clearly DID when they replied to her.)

ALL words can hurt. And intention, in my world, counts. That said, I think it speaks volumes about Jo as a person that she could step away from whatever personal damage this whole thing may have been doing to her, and try to see it from someone else’s perspective. Too bad the people who lambasted her couldn’t do the same.

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aspinthegarden March 4, 2012 at 2:59 pm

melissa, i think if you had replaced the word ‘autism’ with ‘black skin’ you might understand better where we on the spectrum speak from. for myself, although i did not disparage jo for her initial post, i did reach out in response to her courage in opening her heart.

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Cam Pearson March 6, 2012 at 7:47 pm

I don’t mean to be disrespectful, but the ‘black skin’ idea is just ridiculous. What if you replaced the word ‘autism’ with ‘cancer’, would it be OK then? because for most of our children, autism is equal to horrible illness. For most of our children, autism is not some psychological state of evolved brilliance, it is debilitating illness. black skin is not a medical diagnosis; Autism is. Skin color does not cause so much pain that it causes people to put their head through plate glass doors (which happened to a friend’s child this week) or to climb on top of hot stoves (another friend) or to smear excrement all over the house on a daily basis (yet, another friend’s child.) I am really happy that there are so many adults with autism that are doing well enough to even be able to have this debate, it gives me hope for my son and all children with autism. The problem seems to be the definition of Autism. Most of us are not talking about some core part of our children’s psyche or personality, we are talking about PAIN. I applaud Jo for apologizing to people who obviously were offended. However, if the neurodiversity movement’s version of autism does not include the amount of physical torture that our children endure, I would suggest that they direct their anger at whoever started calling this illness Autism in the first place.

Jane Strauss March 3, 2012 at 11:32 pm

Not fancy, but in its own way eloquent, Jo. I hope that at times when I am in need of admission, I can do as well. Thank you for listening, even more, thank you for HEARING. What Rachel, Phil, Kassiane, et al said. Apology accepted.

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Claudia Parker March 4, 2012 at 12:54 am

Thank you Jo, we are proud of you.

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Joy March 4, 2012 at 4:36 am

I’ve never visited your blog before, but I have to say this is one of the most beautiful posts I have ever read. Anywhere. Ever. It’s so seldom that someone can be this humble in a public forum, rather than offering an, “I’m sorry. But________.” We all want to save face and it’s so hard to open up and admit (even to ourselves) that we hurt someone. You have temporarily restored my faith in humanity. ; ) Thanks!

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Jennifer Byde Myers March 4, 2012 at 8:04 am

Thank you for your post. Thank you for gaining such depth, or re-centering on your values so quickly that those who were wounded had salve.
Your humility and grace is inspiring.
Best-
Jennifer

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Jennifer Byde Myers March 4, 2012 at 8:08 am

Thank you for your post. Thank you for gaining such depth, or re-centering on your values so quickly that those who were wounded had salve.
Your humility and grace are inspiring.
Best-
Jennifer

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Zhu Que March 4, 2012 at 9:59 am

Hi! I tried to post on your second post on this website. I have no idea how I would have been received. However, let me simply say that I am impressed. It is extremely DIFFICULT to impress me on the getting over disappointment, and then basically going around the rage zone, and then turning your original statements on their head thing. I have NEVER SEEN A CASE where a person that is not me did not stay mad, and YOU got through it, and apologised for it. You are an emotionally flexible rock star, and that is respectable. *I* have never gotten that far, so colour me extremely impressed.

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Denise Elsmore March 4, 2012 at 11:06 am

Thank you, Jo. Thank you for making me cry with this one. Thank you for being a bigger person. Thank you for growing. Thank you for taking this and turning it into a possibility to grow.
You are a remarkable woman who stands up for her son and loves him unconditionally and you’re capable of admitting that you overstepped a line and learning from it.
I have a great deal of respect for this and I am touched. With this you made me feel respected.

I truly believe that there was a bigger purpose behind what happened in the past week. Amazing things happened.
1. People expressed their compassion and love for their children and were able to support each other.
2. A dialogue was established and for once both sides, the patents and the peoole on the spectrum voiced their opinions.
3. People listened and that led to a sometimes heated but very reflected debate.
4. In the end we all learned something. I learned that there’s is always more to a story than what I see and feel. And you… I guess you learned the same.

I will remember this a long time. The passion with which people fought on both sides, the dialogue, the respect that the dialogue established.

Thank you for taking me on this journey. Thank you for your apology. Thank you all those brave fellow autistics who spoke up. Thank you Jo for being so brave, honest, strong, loving and understanding.

I hope we can all learn from this. And listen and emphasize.

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Sunday Stilwell March 4, 2012 at 12:28 pm

“If it must be done at all, it must be done with grace” ~Anne of Cleves (Henry VIII’s fifth wife)

Kudos to you, my new friend, for showing grace in handling a difficult situation. It is my prayer that that same grace will be bestowed back upon you by those who felt offended.

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Phil Schwarz March 5, 2012 at 6:16 am

Sunday, your comment is *surrounded* by such grace, on this now very long page!
I’m impressed at how this whole thing has turned out: by Jo for doing the hard emotional work and changing her heart, and by all the people who did feel offended originally who have spoken out to thank, congratulate, and welcome her.

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Niksmom March 4, 2012 at 2:53 pm

I am moved by your willingness to go through this process so publicly and so eloquently. I’d like to have half as much grace in dealing with the painful process of growth, acceptance, discovery and understanding. I’m a long way from being there, I fear. But I’m trying.

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Amanda Forest Vivian March 5, 2012 at 1:39 am

You’re a fantastic person! Regardless of the original issue what really matters is that you cared how Autistic people felt about something and when people tried to reach out to you you wanted to reach out to them too. Your post makes me so happy.

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Kathryn Bjornstad-Kelly March 5, 2012 at 11:09 am

I also left a comment on Rebecca’s comment up at the top. I wanted to say something here in case it got lost: I’m really really happy that you wrote this apology because it was awesome and it made me cry and because it seems like most people taking the stance you did in your first post on the subject are never willing to apologize to us.

Also, I’m glad your son is learning to read. I don’t thank autism can be or should be cured but I’m a big believer in teaching people to do as much as they can with what they have, learning to love themselves the way they are as they do it. Not loving myself, autism and all (although I didn’t know what it was called back then, it was just The-Thing-That’s-Wrong-With-Me till the diagnosis was corrected), was a huge hurdle to leap when I was younger. I was 20 by the time I started to pass it. I think you love your children, that you lead by example, and that you can teach them to love themselves. Andrew is still developing and he’s learning. He sounds like an awesome kid.

It sounds like Andrew and I have a common interest, aside from being autistic. I was a huge fan of Thomas the Tank Engine when I was little in the early 1990′s and it was one of my first “special interests.” Gordon was my favorite but Harold is pretty awesome too. I’m sending the kid a mental fist-bump. Now I want to find all my old Thomas the Tank Engine toys, which I hope my parents kept.

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Flannery March 5, 2012 at 3:31 pm

Hi, new here. What a controversy. Funny thing is, I could have written the original “suck it” post. In fact, I think I did write something similar.

I, too, would do almost anything to take away the pain and difficulty my son must face, and to make things easier for him. I know how you felt when you wrote that piece. Joy. Joy for that very big accomplishment of that one word.

Kudos to you for taking the high road and apologizing. It doesn’t matter whether or not you should have to apologize, or whether or not you are entitled to your feelings as a parent. You made peace, and that’s what matters.

But just know, you can feel free to send me a message or text anytime you want to say “suck it autism” in a safe place.

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E (The Third Glance) March 5, 2012 at 5:34 pm

(Sorry, I managed to have this comment post on the Us vs. Them post. It was meant for this post. Since you moderate comments, would you be willing to delete it from that post, and push it through here, and delete this little bit in parentheses? I’m really sorry about that! Serves me right for having multiple tabs open at once.)

Dear Jo,

I am an Autistic adult, though not really “advocate” (yet) in the traditional sense. I’m just now seeing this series of posts, and first of all, I want to commend you for stepping back and listening. I’ve been really lucky, in my time on the blogosphere, that I’ve mostly encountered wonderful parents who, despite the challenges their children face on a daily basis, are willing to listen to those of us who face them too. That doesn’t mean we’re always right, and it doesn’t mean our experiences will be your child’s experiences. But it does mean that we are all willing to listen and consider others’ experiences. I read a large number of special needs parenting blogs, about kids with an extremely wide range of abilities and disabilities, because I want to understand why people do and say what they do.

But I also wanted to share something that I was thinking when I read through all of the posts you linked to above. I live my life by thinking and believing “assume good intentions”. It’s a great rule. I try to assume that someone who has said something that triggered me or was offensive to me, was not said from a place of hate. Dialogue is great, but it has to come from a place of kindness. Sure, it can come from a place of offense (otherwise it never really starts), but really, it’s got to be from a place of good. Quite often, in many different activist communities (the LGBT community, which I used to be involved with in particular) always assume bad intentions. Too often we see or hear something that doesn’t fit our “idea of a perfect world” and we pounce. That is as non-productive as the defensive that we put you on when we do pounce. I grew up in an environment where my parents “hated Autism” – everything that I did that could be related to my autistic traits, I was abused for. They didn’t hit me for reading, in fact, it was encouraged. They would yell, hit, and confiscate my books if I began to read extensively and obsessively on a subject. So I grew up in a reality where my parents truly hated my autism. And it’s a very scary place to be. But I do not assume that everyone else lives that reality. In fact, if you keep a public online blog, to me, the assumption is that you care about your son so deeply, you will do anything to help him grow and develop to his full potential. And your reactions to him and his behaviors come from a place of love. Assume good intentions. If someone says something that offends me, and I’m feeling like I can interact that day, I will say “I’m really sorry, but when you said xxx, that was offensive to me, because of x, y, and z. I do understand where you are coming from, but for me, and the reality that I live, that is extremely offensive.” – I try to open a dialogue, not a screaming match, because if I say or do something offensive (which I have done, more often than I’d like to admit), that is what I would want people to do for me. I wish that it was assumed that we are coming from a place of ignorance, not a place of hate. Sure, SOME people come from a place of hate, but it’s pretty easy to tell which people those are.

From what I see in this conversation and public set of posts, there was pouncing and defensiveness on both sides. You did a wonderful thing by listening, thinking, and considering our point of view, and we all owe you the same respect. Thank you so much for putting this out there, and I am really glad I have found your blog. Andrew sounds like a great kid. “Harold” is a really great first word to read! 2 syllables! May he read many many more very soon.

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Jo March 5, 2012 at 11:02 pm

Hi E. I really appreciate both your willingness to comment and your perspective. I have been floored by the response and it will take me days to reply to all of the comments but each one gives me such strength to be a better parent to BOTH my children. I am so sorry to hear about your abusive upbringing; no one deserves to be treated with such disrespect and disgusting behavior. My heart goes out to the child in you and I hope that you have found some healing in your adult years. I am humbled by the stories that I have read from individuals on the spectrum and it only serves to reignite my passion for creating more empathy and compassion in our world. Thanks again for stopping by and for opening yourself up to me. I appreciate it more than words can express!

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E (The Third Glance) March 6, 2012 at 1:52 am

Hi Jo,
I don’t normally leave links to my own blog posts on other people’s blogs, partially because it feels like shameless self-promotion, and partially because I feel that it often doesn’t fulfill the point of the comment. However I wanted to share a pair of posts I wrote recently about my upbringing that I think you might appreciate and get something out of.
The first is titled “Growing up Autistic: On Nature, Nurture, and Abuse” (http://thethirdglance.wordpress.com/2012/02/15/growing-up-autistic-on-nature-nurture-and-abus/)
And the second is called “Things my parents did RIGHT” (http://thethirdglance.wordpress.com/2012/02/21/things-my-parents-did-right/)

Despite all that my parents did to me, I know they came at it from a place of love, and desire for me to succeed. While their definition of success and mine are often at odds (I’m a PhD student. They wanted nothing more than for me to get married and have babies, neither of which is something on my radar at the moment), I think this desire for their children to have the best possible lives, and to know they are loved, is where most parents come from when raising their children and making those sorts of choices. This doesn’t change the fact that my parents were incredibly abusive and left me in an incredibly bad mental state when I finally moved away.

Sometimes its hard to find ways to communicate the simple idea of “I love you” in a way that both the person saying it and the person receiving it understands. By listening to and considering the stories of those on all sides, communication can only be improved, and the message that you truly want to have your son hear (and that all good parents want to have their children hear), which from what I can tell is “I love you, all of you, and I will do anything and everything within my power to make sure that you grow up to be the best possible person you can be in this world” can be communicated in a way that you both understand it.

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Heather March 5, 2012 at 11:49 pm

OMG…I just read this and I am in tears. I feel shattered. I am a fellow Autism kicker asser or so I tell myself. My son is 7 and I have been trying for 4 years to bring him out of that….now that’s wrong? I accept and love my child with all of my heart and soul…how can I not want a better world for him? A world where other kids aren’t afraid of him, and adults don’t point and whisper, where his own family members don’t keep him at a distance because they don’t know hoe to “deal” with him?????

I understand and I read some of the replies… Autism is a part of who he is. I get that, is it better to say that he is conquering his goals rather than Autism? The very last thing I want to do is be the one person who holds him back when I am supposed to bet the one person he can always count on to be in his corner. This is my child, and I want to help, never hinder him from succeeding.

Jo, you are amazing. Your words in both posts touched a chord inside of me and helped me to see where I need to change some things about my language and attitude. Thank you very much.

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Dixie Redmond March 6, 2012 at 2:00 pm

I purposely haven’t read the other comments. I came here through TPGA. Can I just say you are a beautiful person and a brave one, too? It takes a big person to do what you’ve done. I have a child with autism and have been pondering all of these things, too. I have stopped talking much on the web about autism but I am still reading and trying to figure out how to help my son in the next big transition.

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GirlJanitor March 7, 2012 at 4:57 am

I’m not going to get into the meat of the posts above. I’m just here to say, I was one of the Autistic adults offended by the original article. I’m an Autistic self-advocate, and I do a lot of public speaking and organizing at my college and in the community. I’m one of those people who is oft accused of being over-sensitive, or “looking for reasons to get offended.”

There are days when I just want to hang up the ol tights and cape, and turn my back on the human race.

It is posts like this one, like yours, that give me hope. Not just for you and your son, but for me, you, and everyone. It means a lot to me, personally.

Thank you.

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Andi March 19, 2012 at 6:35 pm

Just want to say THANK YOU! :) Your apology is nothing short of amazing. As an Aspie, I do think that Aspergers (and Autism) sometimes suck, but on the whole I’m pro-neurodiversity, so thanks for your sincere apology. FYI, I don’t personally think you were 100% wrong to begin with, but I LOVE that you’re doing more reading up on the subject now. LOVE. :)

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Casey Dozhier March 19, 2012 at 8:39 pm

I personally love when you say Suck It Autism …….No reason to feel an differently . Let them live in our shoes …I dare them ! We all have our own personal stories -some good , some bad and some terrific . This is your little space in the world – And I think you should say how you really feel . Personally , it helps me on not so perfect days(everyday almost) know that I am not the only ASD parent out there who is so frustrated ! I love you honesty , thanks for sharing -Casey

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Tendai March 28, 2012 at 7:25 pm

When I read the progression of posts and following comments I could feel the hurt from both sides. I really appreciate your apology simply because you realized that your words harmed another even though it wasn’t your intent. You took responsiblity for your actions. It is a great teaching moment and the world would be a better place if more would do this. We could learn a lot from self-advocates about our children and what makes them tick, especially when we have non verbal kids. They took the time to try and educate us rather than just walk away. We also have to remember that they are going to be insulted, offended, oppressed, dismissed and more for the rest of their lives and it shouldn’t come from people who should understand. Who knows? Maybe our kids will be the next generation of self-advocates. I am quite proud of you for apologizing.

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Dawn April 15, 2012 at 1:39 pm

I don’t think you had anything to apologize for!! I LOVED your autism can suck it blog! I have found myself on the receiving end of criticism and anger because I have said the same thing! MY SON IS NOT DEFINED BY HIS DIAGNOSIS! And while my son does have language- and I cannot understand how amazing joyful it was for you to hear that word “Harold” – I can celebrate with you- because while I don’t have to deal with what you deal with daily- I also celebrate the small stuff (seemingly small stuff) and there are days when I also say SUCK IT AUTISM!!!

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Murfomurf February 25, 2013 at 12:38 am

I’m with Dawn (above). You didn’t have to apologise. People need to recognise this is YOUR blog and you can say what you need and want to say here. It is a “sacred” spot for all your opinions and emotions if you choose it to be. To my mind the core of autism does SUCK! Sure it gives some people an identity to stick together within their diagnosis/label and do the best they can do with whatever aspect of their lives THEY choose. Many of them will surpass the non-autistic in what they choose to do, but they will always have that part that I think sucks- the autism part. NO WAY would I want to be autistic given my experience of it from “outside”- there is too much pain and struggle, just as you show with your precious Andrew. It’s all very well for the autism “activists” to oppose therapies. pills and promised “cures”, but they are really only speaking for the high-functioning people like themselves who can SEE their own differences from a similar perspective to non-autistic people. I would be pretty sure that Andrew is not sitting inside his own head saying to himself “I love being autistic and I wish people would not try to teach me how to fit in with everyone else”. Probably he is thinking/feeling a version of “I want to NOT be like this. It’s horrible in here. I want to do stuff like my little brother. I don’t like acting like this but I don’t know what to do right. Love me mum, dad, bro, teacher, lady on the street.” If he could step outside his head I’m sure he would say that AUTISM SUCKS as well. [[hugs]] For you and your family. I used to work with autistic people, mainly young children, right across the spectrum and could get on well with all of them (“eventually” is a word applied to several!] As an older adult, I have quite a number of real friends on the spectrum, some who are having a hard time as their autism sucks for them; others are living pretty mainstream lives with good jobs, homes, some with partners & kids; one or two are now in group homes/long term sheltered accommodation with occasional 1-week stints in mental health clinics. Most have little “quirks” that they NEED to keep themselves going in our over-stimulating world – tics, habits, pre-occupations, little sayings, hobbies, escapes to quiet places, ear plugs for on the bus, ways of dressing, relationships with pets; these serve them well in there brave attempts to quell that SUCK part of their autism they have to live with. [[hugs to all of them]] And I do if they are that sort of autistic person.

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