The other day, my 9-year-old son Andrew, who is severely impacted by autism, did something amazing.
For the first time in his life, he read. It wasn’t a book, or a chapter, or even a sentence.
It was ONE word: Harold. The name of his favorite character from his favorite show, Thomas the Train.
Before the thick tears were finished rolling down my face, I took to my Facebook and Twitter accounts to announce the good news, because what good is social media if you can’t use it to spread this kind of joy, this kind of hope, this kind of HOLY CRAP moment? I took a snapshot of the giant flashcard I had made, and included the following caption:
“To you, a piece of paper with a random name on it. To me, the very first word I’ve ever heard my almost 10-year-old son read. DO YOU HEAR THAT AUTISM? I’m going to teach my son to read, so SUCK IT.”
The congratulations began to pour in immediately because I have an awesome village filled with amazing friends and family who knew that this was something worth celebrating. I rejoiced in the promise of what this miraculous turn of events could mean for my non-verbal child and the idea that he could someday be literate and able to READ just blew my mind in the best of ways.
My cell phone interrupted my runaway thoughts, alerting me that I had received a new twitter message and I smiled as I reached for it, anticipating yet another sweet outpouring of support.
Instead, I was met with a tweet from a gal who had a bone to pick with me:
“Did you just tell autism to SUCK it?”
I informed her that yes, in fact, I had and that I had meant every word of it. She proceeded to tell me how terrible and hurtful and insensitive I was being, that she had autism and that my statement was an insult to her and everyone on the spectrum and that I really needed to rephrase my sentence.
I’m sorry. WHAT?
Now, I don’t need to tell those of you that are parenting a child with autism that ours is a polarized community. We often disagree on the causes of and treatments for autism, and much like our children, no two families dealing with the ramifications of this disorder are truly alike. But what I think most of us CAN relate to is a feeling that even though we “accept” our child’s diagnosis, we spend our days and nights dedicated to trying to GET RID OF IT because – now bear with me for a moment here – autism, the kind that sneaks up on our kids and steals their voices and stifles their creativity and assaults their tender and sensitive sensory systems and holds their bodies and minds and emotions hostage, SUCKS.
I have spent eight years now watching my little boy fight against the current of this very fast-paced world. His life is filled with CAN’Ts and WON’Ts and PROBABLY NOT’s. From the moment Andrew wakes up until he lays his head down at night, he is in the fight of his life to learn how to pee on the toilet, brush his teeth, put on his pants, climb the stairs, participate in school, connect with his peers, communicate his needs with means other than the speech he lacks, and do all the things that so many of us take for granted each day. I watched the light go out from his eyes at 12 months of age and I have fought tooth and nail since then to turn it back on, even when others told me there was little hope, even when I spent the first few years drinking myself numb, even when he didn’t even know I was in the room with him.
So forgive me if, when he does something EXTRAORDINARY like read a name on a giant homemade flashcard, the first thing I think after the initial euphoria wears off is SUCK IT AUTISM. I have EARNED the right to say that. I have endured enough helplessness and heartbreak and hurt to be able to not only give autism the finger, but tell it to sit and spin while it’s at it.
This is NOT THE SAME as saying that people with autism suck. My son has autism. My son most definitely does not suck. In fact, he’s amazing, funny, loving, beautiful, inspiring. But he’s also being held hostage by a disorder that comes in many shapes and sizes, a disorder that in our house, is not a welcome guest but rather a selfish and thoughtless intruder. The fact that I do not embrace autism as something to be romanticized or adored does not mean I do not love the bejezus out of my son. I also realize that autism is a part of who he is, has shaped a portion of the person he has become and continues to be. But if someone handed me a guaranteed cure tomorrow, I wouldn’t hesitate one nanosecond before shoving it down his throat. I would risk losing a portion of the little boy I love so fiercely and unequivocally if it meant that he would have a chance at navigating this life without the bondage of autism.
Because that’s my job as his mom; to put his needs before my own and what he NEEDS is someone who sees his autism for what it is: a thief of dreams and potential, a ruthless foe that does not deserve a peace treaty.
There is an entire community of folks on the spectrum who denounce those of us who seek funding for research and attempt to implement the newest medical and behavioral interventions in an effort to help our children. They criticize our efforts and accuse us of ableism and twist the love and hope and promise we hold for our children into something ugly and misleading. They wonder why we won’t just embrace our babies for who they are and celebrate the uniqueness that comes with their autism.They make our plight to salvage what is left of our children’s future look as if we are questioning the worth of everyone with an autism diagnosis and they point fingers and sling insults without having walked a day in our shoes.
Honestly? It’s a bunch of BULLSHIT.
I invite those of you who consider me an ableist for telling autism to SUCK IT to come into my home and spend a day with me and Andrew. I invite you to see the reality that my child lives with as he struggles against the silence that blankets him, falls apart when those around him don’t understand his needs, and begs for mercy when the sights and sounds of life come bearing down upon his ears and nervous system. I want you to see the drooling, hear the teeth grinding and the desperate wails, watch as he wills his body to keep up with his younger brother even though he doesn’t stand a chance.
This is what our version of autism looks like.
Then I want you to watch as I scoop him up into my arms, bury my face in his neck, and whisper my unending love for him into his ears. I want you to look into my eyes as I am forced to implement therapeutic strategies that were taught to me by strangers — even though all I want to do is crumble beneath the strain of our reality — and witness the determination I have for making my son better. And then, after a particularly difficult day, I want you to watch as I hold up a giant flashcard with what appears to be a random name on it and urge my little boy to tell me what it says. I want you to wait with me for what seems like an excruciating amount of time, and then hear as he fills the air with the most perfect combination of vowels and consonants while he READS for the first time in his life.
I will cry and dance and laugh and hug and then I will point two middle fingers towards the sky and tell autism to SUCK IT.
This is not about acceptance and respect and it most certainly is not about YOU. No matter what you think of me and how I choose to fight this fight, I am not the one you need to worry about when it comes to knowing that you are worthy and that you matter and that you are fabulous just the way you are; just because I want something more for my son, doesn’t mean I think any less of you. This spectrum is wide and diverse and your experiences are probably vastly different then mine and so if you want, we can continue this stupid song-and-dance of who’s right and who’s wrong, or we can just peacefully agree to disagree.
But make no mistake. When my child defies the odds, shows autism who’s boss, meets previously unimaginable milestones, performs even the tiniest of miracles, and courageously defies his limitations, I’m not just going to tell autism to SUCK IT, I’m going to do what a good friend of mine suggested and kick it right in the balls.
UPDATE:
http://joashline.com/2012/03/the-evolution-of-an-apology.html
Recent special needs columns by Jo Ashline for The OC Register:
YOU GO GIRL. TELL AUTISM TO SUCK IT..I do that every day. everyday that I work with my boys, give them therapy, give them meds, give them the ability to choose their own future. Tell those morons to suck it themselves. Ableism is bullcrap is what I say. Can’t tell you how many times I have been called that myself. Let them wallow in their own self-importance, for that is what it is. It is an excuse, an excuse for their own failings. They cannot succeed in the world so its the world’s bigotry rather than the fact that they need to try harder, work harder and function better. The world does not revolve around them, nor do we have to care what they think about wanting to get rid of autism. Too bad. Everyone with autism isn’t Einstein, in fact most are not, and we have a right to want our children to have the best life possible.
Right on, Jo. Couldn’t have said it better myself.
Jo – your story touched me. Your love for your child is obvious, and he’s lucky to have a mom like you.
Hi, Jo. It’s Shannon from the Register. Once again you’ve brought tears to my eyes and taught me so much. Thank you for you honesty and your powerful, powerful words. GO ANDREW!
I cannot STAND the people who self diagnose themselves and their children, and dont even get me started on those that refuse to have their child diagnosed so they get the right help as they dont want to “label” their child however i will NEVER stand up and tell them thats what i think, because im not them, their child is not mine and im not parenting their child.
When will people learn to keep their mouths shut when they clearly have no idea what we go through everyday, as if its a walk in the park!
Good on you mama i say SUCK IT AUTISM aswell! xx
LOVE this. exactly how i feel. i honestly can’t stand it when people say autism is a blessing, or god only gives us what we can handle, or the plethora of cliche crap i hear so often. thanks for being REAL. i hate autism, what it has done to my son, to our little broken family. thank you for putting into words what i feel every day. i know some people say things with the best of intentions and i do my best to take it that way but, i’ve seen and heard all too frequently those who are out right offended by my sadness. as if i’m doing my son a disservice for not being happy about autism. all i can think is “it must be nice to be on the higher end of the spectrum.” i can’t image anyone would feel any differently if they were constantly cleaning up crap, getting their hair ripped out, forever unable to make it better. all i want is my son back, for him to not hurt himself or me anymore. i have a few choice words for autism, too. anyone who doesn’t get it need not waste their precious time commenting.
I’m ready to wear SUCK IT on a T-Shirt, or put a bumper sticker on my car! People are way to sensitive… Go Mama GO!
What REALLY sucks is how you had to take this post down from the OC Register. THAT I’m really sorry for.
As father of a 9 year old son with autism, I have only two words for you lady:
You Rock.
This was really beautiful. So clear to me that you are fighting for your son’s life, and in that fight, you may tell anyone you wish to suck it. That’s your right. It doesn’t diminish anyone else’s right to their own experience.
Yay for Harold, and Andrew, and you 🙂
I think you have earned the right to tell autism to suck it if you want to. I am autistic and even though it does make me who I am, sometimes autism does suck! I am intelligent and people think I should just be able to do what they do, and sometimes I can fake it. But, sometimes I just can’t do it!
Good for you. My Ethan has oppositional defiant disorder. I wish he hadn’t but he has. We have to make the best of it. I’m glad you had this amazing moment and hope you have lots more. Good luck x
Jo…I just stumbled across your article and am totally impressed by YOU!! I teach parenting classes and talk to hundreds of parents each year…many of them are sent to me by the district because “something is not right”. I talk to these parents and try to help them understand their little ones and get them on the right track of screenings and tests if that’s what they need. I see parents in tears EVERY day, because we all love our children so deeply it hurts when we cannot help them. What have I learned as I deal with these families each day? Do NOT judge another parent for we do not know what goes on in their houses? We all have a story to tell and I know that YOUR story is goig to impact many parents going through the SAME thing…having kids is a difficult job…NO MATTER WHAT!! Add Autism, poverty, alcoholism among family member or any other situation and it becomes even more overwhelming!! Thanks for telling your story…thanks for letting me read it…it will help me to be a better teacher as I TRY to understand the home life of little ones with special needs. KEEP FIGHTING for Andrew…he deserves the best!!
1st) *screams HAROLD* right there with Andrew
2nd) *sreams SUCK IT AUTISM*
Maybe this person doesn’t know what it is like to have a child on the spectrum. How would they, they are on the spectrum. Fighting from the moment you wake up to the moment you (try and lot of times unsucessfull)y sleep and rest figuring out how to find help for your child and get equal rights for your child. Maybe, just maybe, this persons mother was saying “suck it Autism” too at some point? Sure it is controversial to say…. but just like my pyschologist said…. a lot of parents feel it but can’t be honest enough to say it – let alone on a public forum.
We would never change our children, ever! They are our light, our joy, our love. They shape us, our family, our path in this life. They make us better people. They teach love, patience and pureness.
But damn it, if we want to say SUCK IT, we can say SUCK IT.
I am a chronic lurker and a mother of a almost 11 yr old on the spectrum. I love your humor and amazing honesty, it is refreshing like a breath of fresh air. It is the world we live. Celebrate the highs! Grieve the lows! You go girl, don’t let them get you down.
What a wonderful sound that must have been for you to hear!
Congratulations to Andrew and to you.
May you always have the strength to say SUCK IT!
I remember saying that I would have sold my soul to make my children healthier and being told what a horrible thing that was to say. Truth is I still would have sold my soul.
Detailed response here:
http://thautcast.com/drupal5/content/telling-autism-suck-it-10-thoughts
I’m sure my message will remain here for all of five minutes before you censor it for your own sake and for the sakes of “autism moms” and “mother warriors” everywhere, but in the meantime, here’s my response.
You see, I am an AUTISTIC mom.
Married to an AUTISTIC man. Whose siblings, mother, and maternal grandmother are AUTISTIC. And they weren’t as high functioning as I was when I was a kid; they were raised in small town Ohio, with no interventive services, no sophistication of diagnosis, nothing like that. So, like Einstein (another autistic late bloomer) my husband and brothers got called the “R” word a lot, including by their teachers, although in my brother in law’s case, he does indeed have an intellectual disability, which is the primary handicap.
My AUTISTIC husband and I have four AUTISTIC daughters, some more high functioning than others. So you see, we’re not just self absorbed aspies who have “fake autism” and who can’t possibly understand the real trauma autism moms go through or the need for a cure, to FIGHT THE ENEMY THAT IS DESTROYING CHILDREN’S BRAINS IN A TERRIFYING EPIDEMIC.
We’re offended. Gee, I bet you didn’t see that one coming, did you?
We don’t care to tell autism to “suck it.” We’d rather work with our odd neurological wiring, give our children therapy to help them do the same and gain independence, and trust that we’re autistic for a reason, because that’s how we were made, and G-d does not make junk. Yeah, the fact that I’m saying “born autistic” means I’m not on the “brain damage from evil toxins” bandwagon. Bet you didn’t see that coming, either.
Anyway, my husband and I wouldn’t tell autism to “suck it.” We save those sorts of fighting words for bigots.
Well said, and thank you for being brave enough to say it. Autism can kiss all of our collective asses.
What can I say that we haven’t said a thousand times before? Parents will listen to everyone but self-advocates, as always.
Thank you for that. I’m honestly concerned for a boy growing up with people who want to shove things down his throat. I’m glad my mom told me “you can do anything you want to, you just have to do it differently” rather than “you are defective and we must fix you”.
To the author: sorry you didn’t get the perfect child you felt you were entitled to. Newsflash: that child doesn’t exist. But your son does, and he is a human person with feelings. He’s not a hostage or a burden. And by treating him that way, it fulfills the notion that he is in fact “suffering” from autism.
I don’t “suffer” from autism, but I am an autistic person who lives independently and is successful through understanding, compassion, and support, just like any other human being.
The sad thing is that YOU seem to feel like you are the one who is “suffering” from your son’s autism.
Because we’re too busy trying to turn our children into self-advocates. Dear God. Have you seen how vast the spectrum is? Do you realize that not everyone with an autism diagnosis is able to speak up for her or himself? This is NOT A ONE SIZE fits all scenario.
Unfortunately, I do have to shove things down his throat: like the anti-seizure medications three times a day that allow him to walk and go to school rather than be bedridden with nonstop assaults on his body. My son IS perfect, but his perfection in my eyes and in my heart have no bearing on the grim reality that he lives with each and every day. My unconditional love for him does not negate the fact that his version of autism SUCKS. Big time. And that he deserves a chance at overcoming it, as much as possible.
Hooray!
I’m not going to erase your comment, because it just helps to drive home my point that autism does not affect everyone equally. My son, in the state that he is in today, has no chance at an independent life like the one you are describing. Which is why autism can SUCK IT.
Amen!
Thank you so very much!!
Thank you Sandy. It was a phenomenal sound and a moment we will never forget. My job is not to appease a community of folks who can think and speak on behalf of themselves. My job is to help my son who can’t. I appreciate your comment!
Hi Becky! I love your screams! hahah! And you are right, we love our children and they teach us more than we could ever possibly hope to teach them. But that doesn’t mean that we don’t want more for them and that they aren’t worthy of more. So yeah. Suck it Autism!
Favorite comment of the day Markus! Thank you so much!
Couldn’t have said it better myself! From one ‘potty’ mouth ASD mom to another, I salute you. 🙂
I love your honesty, Jo. My daughter is almost 4 and is completely nonverbal. I don’t know what the future holds for her. She also has epilepsy. I wish autism would get the hell out of her life.
@Sarah Dorrance-Minch: ‘Self absorbed aspies’? Really? Wow. I sincerely hope that this does not mean that you would question the struggles and challenges of those who happen to be low on the spectrum. I am sorry if you have ever so callously been called this.
I am not autistic. I am not the parent of an autistic child. But I can’t help but feel that the frustration and fear felt by by either party must be overwhelming – understanding a world to which you cannot relate, or understanding an experience you cannot ever hope to understand. I would say that the fear generated by this is grounds enough for someone to hate autism – not the person with it, but the condition itself.
We can never judge a person until we’ve walked a mile in their shoes. Using a term like, ‘self absorbed aspies’, and questioning how someone views a condition that has irrevocably changed their life, sounds awfully judgmental to me. Perhaps your children are fortunate that you can see life a little more clearly from their perspective. Many parents of autistic children do not have the same insights as you.
I wish you and all ‘autistic moms’ only the best on your parenting journey. Our children are the light of our lives. No wonder we are so fiercely passionate when it comes to debates like these.
As a mom of an 11 year old non-verbal daughter who takes a cocktail of seizure meds morning and night and struggles to do absolutely everything, just had to say “way to go” and I feel exactly the same way. Congratulations on the reading. My daughter said “ma ma” for the first time last week – I know how you feel.
You go girl! Congrats on his first word!
What people, wait, please allow me to clarify…naysayers, fail to comprehend is that feelings are neither right or wrong…and every one has the RIGHT to their OWN feelings.
I applaud you for sharing YOUR feelings about autism with us. I am also very grateful that, in some small way, I was able to rejoice with you, Andrew & your family on this momentous occasion.
I agree with you Jo, I FEEL that autism can SUCK IT!
So, because your child cannot, at this time, communicate in the way that some other people on the spectrum (from all parts of that spectrum) can communicate (in a variety of forms), you should just ignore the autistics (not ‘just aspies’, but autistics from all over the spectrum) who can communicate, and everything they have to say, collectively, about the experience of autistic people?
Yeah, that sounds like a great idea. I mean, it’s not like they could have any insights into anything. I mean, clearly, any autistic person who learned to communicate did so by telling their autism to ‘suck it’, not by learning how to function as an autistic person or anything. What’s that? They overwhelmingly claim that this is exactly how they learned to communicate? Well, better ignore them. If they can communicate, they must not really be autistic, because as we all know, there is no way autistic people can ever learn to communicate.
Good for you. I”m glad you have had such great success. And you know what, some of us who have Autism, myself being mild Aspie, didn’t take it as insulting or rude. In fact, when I wrote my first GFCF Cookbook and it sold in another country, I told Autism to Suck It.
Harold the Helicopter, pride of the skies!!! Way to go Andrew, and way to go Mom.
How am i JUST finding you!!! A big giant congrats to your family! What a giant milestone! I feel the same way.. Autism can suck the big giant one! Many of my tweets consist of #autismsucks I do so like the SUCK IT Autism 🙂
Shout it loud – shout it proud.
SUCK IT AUTISM. You are not going to take this child or this family!
Haters gonna hate. Can’t change THAT.
This post is fantastic!!! While I love my son to death, the struggles that autism brings does suck most of the time. If there were ways to make life easier for our children, ANYONE would do it. I don’t understand the hatred for you telling autism to SUCK IT. I do, every single day when milestones are achieved. BRAVO!
Heres what I think.
The spectrum is large. Like no two snowflakes, no two autistics a re alike. Some have it much easier than others.
What we need is for self advocates and parents to agree to disagree. Folks, we are all in this together. And while I don’t agree with everyone’s viewpoint, I would hope that folks would at least respect mine. We are all entitled to our own experiences and opinions. I can’t take that away from you and you cannot take that away from me.
Some self advocates are at the severe end of the spectrum. Some aren’t. Some parents have severely affected children and really struggle day to say. Some don’t. our experiences are all different. Not worse than one another, not better. There is no hardship olyimpics. One thing I can tell you is that the majority of parents just want what is best for their child and family. They aren’t intentionally trying to harm their children. They love them fiercely. And just because it isn’t what I would do with my family doesn’t mean they are abusive, bad parents, misguided or wrong. They are different.
There is some weird thing about the Internet that people can be nasty, rude and downright abusive because they are hiding behind a computer screen and at happens on both sides of the fence. Think we all need to step back from time to time and re evaluate what we are doing. No realize we aren’t doing this alone.
My sister has an autistic daughter named Izabel, and every little victory and triumph Izabel makes despite the adversity she faces every single day is just that; a triumph. Congratulations are due to your son – and to you, for speaking for him while he cannot. Kudos! and of course – suck it, autism. 🙂
Congratulations on your son speaking his first read word! That is huge!
I’m late to this “party” and although I’ve read the post, I can’t claim to have read the comments. It’s probably just as well since I want my reactions to be my own, not someone else’s.
Firstly, Well done to Andrew and to you for having such a great moment.
I have aspergers syndrome but I’m not “badly affected by autism”. You say that Andrew is and I believe you. It’s a big achievement for him.
You’re seeing autism as the enemy and I think that in this case, it probably is. Some people with autism do well but some do not. Wanting less impact and wanting Andrew to make progress doesn’t make you a curebie. I believe it’s important to accept people with autism as they are but I don’t ever think that they should stop fighting for their abilities.
I understand how the autism community might be up in arms at the sensationalist title of your post/comment but I see from your other posts that you’ve done this before (eg: “kicked your husband out of bed”). There’s nothing wrong with a catchy title.
Unfortunately people will take your posts out of context regardless of what you do. There’s no way to prevent that other than a follow-up post or two. In the end though, you can’t be responsible for what other people think. Everyone is free to choose their own thoughts and no amount of arguing will make a difference.
I’m sorry that your moment of pride has “blown up” into something that is being discussed in the wrong context all over the internet.
It should be all about Andrew and his accomplishment – and you have a right to be so very very proud.
Jo Ashline I read your post and I am so happy for your little one’s first word! I agree with you, this journey is still teaching us to be thankful because we take too much for granted and every baby step forward has too many reasons for celebration. I am sure you will teach him to read and he is probably reading already because that uses a different area of his brain. Congratulations on that first reading word!!!
I know that you are determined and a strong women through the son that has been given to you. Standing up for your point of view is commendable, but you bring us to comment because it matters to us also.
There are been many people reading your blog now who already have a side, but there are some that will be more aware not just of your son’s story, but also of many others living their own journey on the same path as you.
I will tell you why matters to me. Before my kid’s diagnosis, it was killing us to know what was wrong with us or with him… after the diagnosis, from the getting out the sadness and pain and putting our energy and efforts to finding out more about our new Opponent!!! We finally have a name and we were ready to the fight it all the way. So we stared searching and learning – and supporting the worldwide fight for awareness and a cure. During our search we found hope through the Autism Center of America who changed my point of view about autism – looking at it as part of my son, something to be embraced.
Living the challenges that you pointed out, the “opponent” became an “opportunity” to introduce ourselves to my son’s way to experience and live life. I learn to respect autism and with the autistic community and Dr. Temple Grandin we learn to Admire. “Different is not less”, we find new clues, tools and understanding of process, unknown to us before and yes, I learn to express myself in a different way.
We still working non stop, and the fight continue, but part of it is to make a place of respect for my son’s and your son’s differences, and those comments and t-shirts do not make such a place in our society for them that’s why now it matters to me.
Okay, so I got to this post via your Bigot post via Facebook and bactracked here. I told Autism to suck it two hours ago and will again tomorrow. Cancer sucks too so does AIDS, it’s endless. My 5 year old has Autism and I understand when you say, “suck it” it does not mean the people with the disorder, it means the disorder that makes life so challenging for them. I would’ve tweeted out the same thing in a heartbeat, and know that I will tweet this post out proudly as well. Despite the few who will try to break you, know that there are many who have your back and support you. Because you love your son, because you yearn for him the smallest things, like saying a word, because Autism took away his words and you don’t hear, “I love you”. But you feel it. Our kids have Autism, and we love them for it and with it and despite of it, and wouldn’t change a thing about them. But Autism robs them of much too, yet they are courageous and are a model of strength. Hang in there. Oh, I’ll take a t-shirt when they are available. Follow me on twitter if you need more support. @bubblegumcari
I like how this one person who apparently is on one end of the spectrum… says your comment was “an insult to her and everyone on the spectrum” as if she spoke for the entire autistic community. Well, she didn’t speak for our house… so her comment is untrue.
You go girl! I think you’ve earned the right to go tell autism to go f**k itself.
Jo, I don’t know how you do it. I don’t know how you stay so reasonable and calm. You are fantastic and this story is beautiful.
wow…I can’t believe all the hoopla! I admit I don’t have a child on the spectrum, but I do have a daughter with Down Syndrome and there are many times I tell DS to suck it or kiss my ass when she does something awesome…I was totally shocked at the reaction…and I’m so sorry you had to deal with this crazy backlash when all you should have been doing is rejoicing in your son’s victory….
Please remember that today’s adult self-advocates were once children much like your son. We’ve worked hard to get where we are. We continue to work hard so that *all* people on the spectrum – high/low/Aspie/whatever – will be respected as human beings and taken seriously when we find our voices.
In another post, you said you wished that your son could write a blog post and argue the way some of your critics have. I really hope that he does! But, consider this: every time you dismiss a self-advocate’s point of view, you’re actually making it harder for your own child to be taken seriously when he advocates for himself. Because someone will say to him, “You are so high-functioning, you couldn’t possibly understand how it is for MY kid!”
The single greatest gift you could give to an autistic child is to respect their adult counterparts. Get to know us, learn about us and how we coped. I think you’d be surprised at what we could all learn from each other. (disagree with what we say, obviously, but please don’t write us off immediately because you think we couldn’t know where you’re coming from…)
🙂
I agree, and would add further that many autistic self-advocates are also parents of autistic children. Many of us have ‘been there’, too – if not in exact symptom, then certainly in hardship. Many of us have watched our children struggle while we struggle ourselves. It really isn’t an “us versus them” scenario at all; we’re far more alike than different.
I will say, however, that just because most people have the best of intentions does not mean they aren’t doing harm anyway. As the saying goes: ‘The road to hell is paved with good intentions”. We should do the best we can, as we always do, but also be open to hearing criticism. I know that’s a *lot* easier said than done. No one likes being told they are wrong. I sure as hell don’t. But if we become so fragile that we can’t bear to hear anything that doesn’t completely validate our preconceived beliefs, then we’ve already lost. We *need* to hear each other. We need to learn from each other.
All the best to both of you.
Gavin, I think the main objection people have had to this post (that I’ve seen, anyway) is that it was also published in a column of a mainstream US newspaper. Nothing wrong with that in and of itself, but when our sentiments become part of the wider conversation on “what it’s like to have an autistic child”, well, the rules change a bit.
I also think it’s a mistake to reduce all criticism down to merely taking this post out of context, or high-versus-low-functioning. Sure, some of it is downright nasty, but some of it is actually pretty valid.
I usually don’t comment on blogs but I wanted to ask you about this:
“They cannot succeed in the world so its the world’s bigotry rather than the fact that they need to try harder, work harder and function better.”
When your own kids can’t succeed in the world, do you really think it is because they’re not trying hard? Do you think Andrew can’t read books because he isn’t working harder to function?
If people are just disabled because they aren’t trying, then why do you want to get rid of autism? It doesn’t sound like you think it is even a real thing.
Um, what? Where did you get that quote from? That’s not something I said. How did you come to the conclusion that I people are disabled because they aren’t trying hard enough? OMG. How quickly people twist words to turn them into what they want to be hearing.
Hi Jo, I’m quoting Elise, the person whose comment I am responding to. I know that you didn’t say that. Sorry for the confusion.
Oh Good God. Sorry. I am obviously sleep deprived. This will also teach me a lesson about responding to comments via email rather than wordpress. Sorry about that Amanda. Carry on!
My names harold (:
How many of us think that our kids want us to quit fighting Autism? I sincerely doubt that any of our kids are going to grow up and say, “Mom, I LIKED having seizures and diarrhea and not being able to communicate. It was AWESOME and you went and took it away! AND, I feel VERY unloved and unaccepted because of it.” Yep. Not gonna happen. Autism can SUCK IT!! Way to go, Jo.
Hi Jo –
Nicely stated.
– pD
Wow! What a great discussion! I am the proud momma of 2 wonderful boys on the spectrum, (my two tiny bubbles), one higher functioning age 7 and one lower functioning age 4. My older son also has ADHD. My husband has Aspergers and ADD and I have ADHD. (and boy, could I tell you a few stories about the fun times we have in our house!) I teach my son (older) everyday to be proud of who he is, I tell him how lucky I am to be his mommy (and his brothers), I tell him that Autism is a gift, and remind him about all of the awesome things he can do that others his age cannot. He is an amazing pianist, he is at the top of his class academically, he is so handsome and I love him soooo much. I believe I would not change who he or his brother are for anything in the world.
Now, turn back the clock, when my oldest boy was 18 months, I knew something was wrong. I took him to a specialist who told me he might be autistic. “autistic! Not my kid. That woman must be crazy to think that! He is perfect!”. Well, I never went back to her… (hindsight really is 20/20), 4 years and 1 child later, both my sons were diagnosed with ASD by 2 completely different practitioners, different from the original practitioner that saw my oldest son, in the same week, 2 weeks before Christmas. I felt like my kids were given a death sentence. I new nothing about autism and was terrified. I knew no one with autism, or anyone who had children on the spectrum. I knew of none of the resources here in Winnipeg. I thought that my life was over.
Now, 2 years later, I see a very different picture. I love my kids for who and what they are. I have learned that being hateful and negative, brings nothing but more hate and more negativity and I have vowed to rid all of the hate and negativity from my life. This is coming from a person who has lost her nursing job, as needing to care for and have to take time off work when my children needed me, was too much if a burden on my employer. A woman who currently has a family income of about half of what is needed to pay the bills and who might loose her house any day now. I know that ridding all the negativity in my life is practically impossible, but what purpose does it serve? To get so stressed out That I ( unfortunately the highest functioning member of our family) can’t function?
Oops… ADHD moment… Did I go off topic?
What I am trying to say is we love our kids unconditionally. We want the best for them. Every time my son comes home from school crying ( which has been everyday for the past 3 weeks) about some kid who was bullying him, or his all too literal take on an event that happened at school that he has no ability to comprehend but in its most literal sence, breaks my heart over and over again. So, I just can’t even imagine how HE feels. Every time my younger son tries to tell me something that he does not know how to communicate, that i feel like i should somehow be able to telepathically understand because i am his mother, but cannot, it hurts me so bad i would rather set my own hair on fire than to see the frustration in his eyes, but I’m sure it hurts HIM more.
So, as much as I love my kids for who they are and as much as I can say that they wouldn’t posess all of the amazing qualities that they have if they were not diagnosed on the spectrum. And as much as I agree with a quote I saw the other day saying “when you shine a perfect light through a perfect diamond, you get a perfect spectrum” – author unknown-
I have to agree, that every time my kids do something that I was told they would not, could not or probably will never do…. I do say” SUCK IT AUTISM! Here’s one point for our team!”
And I will continue to say it! Every time!!!!
I agree with the person who wrote, “we all have a right to feel what we are feeling”. That can not be changed in any situation, parenting, marital, political… We can’t help how we feel about something. And how we feel is never wrong, it just is what it is. I believe that no matter what we feel or how we feel about something, it is important to remember that someone else likely feels the same and someone else likely feels different. We just must remember that respecting each others feelings is something that we can control. So, if I have said something disrespectful to the feelings of someone else, I am truly sorry. I hope you can understand that I have expressed my feelings on this topic and I hear, understand and respect your feelings.
Jo- thanks for the great discussion… Let me know if I have permission to make the “suck it autism” shirt….I have an embroidery machine and I’m not afraid to use it!
I agree 100%
Saying that autism can suck it is NOT the same as saying that a person with autism sucks.
Our household regularly tells autism to suck it.
Wow. My Andrew is 7 & he also has autism. I so appreciate this post for the raw truth in it. I understand just how big the small victories are & just how frustrating living with this can be. Thanks for your honesty. I also can understand how people not living with this can be offended or take your honesty out of context. I also love my son more than words can describe & I’m so thankful for everything he has brought into our lives, but if they found “a cure” tomorrow, I’d be standing at the front of the line with you. I want so much more for my son’s future. The new motto in our house from now on is, SUCK IT, AUTISM!
I’m reading this months after the fact, but as the sister of two autistic men (one on the high end of the spectrum, one on the low end), I just want to say:
(1) CONGRATS TO YOUR SON! I hope it was the first of many, many accomplishments, and that he has many more ‘Harold’ moments.
(2) Damn RIGHT you’ve earned the right to say SUCK IT to autism! And so has your son Andrew! I know you were attacked by a lot of people on the high end of the spectrum who took offense to your statements, but they truly have no cotton-picking idea what life on the lower end is like. So they, too, can suck it.
I don’t know why people can’t understand that it’s possible to love a disabled person while despising the condition that disables him, that leaves him in pain, that renders him helpless. And just because one person is able to cope with their particular manifestation of disability doesn’t mean that someone else is going to be able to cope with a different manifestation of the same disability. If any of your critics were dying of pancreatic cancer, and said “F**K CANCER”, and someone whose breast cancer went into remission a decade ago started going on about how hurt and insulted she felt as a result, I imagine those folks would would be incredulous to say the least. Your critics are suffering from a bad case of autism privilege, and they need to unpack their backpacks.
Good luck to you and Andrew, and thank you so much for this article.
I’m glad I read this article as I have Asperger’s Syndrome, which is in the autism spectrum. I can honestly say that I completely share your sentiment of telling autism to suck it. When I was kindergarten my teacher told my mother that I was retarded and would never amount to much in life. I am now a SENIOR in COLLEGE about to get my bachelors degree in geology. So I completely understand how you feel. However, there is one thing I’d like to point out regarding “forcing” a cure on your son if there was a cure. Please do not misunderstand me, as I do understand why you would want to, because, I’m not going to lie there are times when I wish I could be…more normal if you know what I mean. But at the same time…I don’t really see myself as disabled. I know I am different and I have to fight with my issues every day. So, what I’m trying to say is…what if your son doesn’t see himself as disabled and is happy just the way he is? Granted, it took me a long time to come to that conclusion myself. And I know that I’m not as severely impacted by autism as your son, so maybe it’s different for me. And I can’t honestly say that if he were my son, that I would hesitate to cure him either. I just wanted to point out something you might not have thought about. In any case, I wish you and your son all the luck and happiness in the world and I really hope he defies the odds!
While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that good for ANYONE?
Elise – Interesting words for a woman who hires a nanny to accompany her adult son with autism to graduate school, because nobody bothered to teach him how to SHUDDER take public transit all by himself. And picks his classes, intervenes on his behalf with his professors and the college’s career office, forbids him from going on mandatory-for-college-credit field trips… in addition to the nanny (oopsie! Para!!) that accompanies him to classes.
You’re proud of having infantilized two otherwise smart, capable young men who just happen to have autism — but have no friends, no ability to pick their own college classes or even majors, zero work experience and no ability to do anything academic without a nanny that you pay for!!
These people who attack you for your honest feelings are simply deluded and are given to excessive mental masterbation.
I see this about racism, disabilities, and classism.
It’s a double approach paradox. If you agree with them they’re right. If you disagree your and ableist, acting out a “derailment” or some other nonesense, and of course they’re validated once again. There is no win-win scenario in their eyes. It’s all win/lose.
If you look closely to what they say you’ll see that much of it is predicated upon their assuming to know your thoughts or motives. In many case better than you do yourself.
This is patently false and quite ridiculous.
I have worked in the mental health field for over 30 years. Believe me, political correctness is nothing new.
You sound like a wonderful and caring mother. Please don’t give these people another thought. They don’t deserve it. They aren’t helping anyone but their own broken egos.