our autism

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Ed note: Warning, what follows is deeply personal, intensely honest and pretty damn raw. I’m fairly certain that one could take sentences and even full paragraphs out of context and I’d pretty much look like an @sshole. Hell, maybe even when taken in full I look like an @sshole. But I think the chances are far lower if presented in its totality. 

That said, I ask two things as you continue on – 1. That you reserve judgement until you’ve read the entire post. 2. That you link to the post rather than quoting it.

And I’ll add a third – that you read it in the spirit with which you’d want your own diary to be read. 

Thank you. 

The Thinking Person’s Guide to Autism  has a wonderful initiative this April. In honor of Autism Awareness Month they’re publishing interviews with autistic people. One by one, they are showing the faces of autism,  and in so doing offering the world a glimpse at the people behind the label.

It’s exactly what I preach day in and day out, isn’t it? Ad nauseum really. Tell your stories, demystify autism, pull back the curtain to reveal the amazing people behind it.

So I was thrilled when I got the interview questions in my inbox. I began to think about which picture of Brooke we could use for the post. Perhaps one of my beautiful girl laughing her incredible, whole body laugh. Or maybe one of her doing happy. Whatever it would be, I looked forward to choosing together.

On Saturday morning, Brooke and I were cuddled together in my bed. She was playing on her iPad, her head propped up on my hip. It seemed like the perfect opportunity.

I opened my laptop and looked at the questions.

What is your name?

Do you have a website?

What would you like a one-sentence description of yourself to say?

Do you have any autistic superpowers? What are they?

What are some situations that make you happy, or satisfied?

What are some situations that make you sad, or anxious?

Are there specific topics you find particularly compelling?

What are your preferred ways to be social?

What traits do you prize in a friend, or companion?

Are there parts of your life you wish were easier?

What’s the next big goal you have for yourself?

What does bliss feel like to you?

I’d already asked TPGA’s managing editor, Shannon if it was OK to modify the questions to make them accessible to Brooke. There was no way my girl was going to remotely understand words like compelling or concepts like bliss. Of course, she’d readily agreed.

So what I planned to present to Brooke that morning were the now significantly modified questions.

“Hey, Brooke, Honey,” I began, “can you tell me what it feels like when you’re really, really happy?”

“I smile,” she said.

“Well, yes, Baby, you do. That’s a great answer. But how do you feel on the INSIDE when you’re smiling?”

“Like I’m happy.”

Fair enough.

I tried again.

“How do you like to spend time with your friends?”

“When I’m with them.”

“Right, Baby. When you’re with your friends, what do you like to do with them?”

“I like to be with them.  You’re all done asking now.”

And I was. Because I knew that we’d get no further toward really answering the questions. Sure, I could eventually get her to tell me that she likes to do Ring-Around-the-Rosy or Hands-in when she’s with friends. I could probably tease out that the fire alarm makes her anxious. But her answers would be an inch deep and a mile wide and as much as they are fabulous and wonderful and BROOKE, well, if we’re being even remotely honest here, they were not really answering the questions in the spirit of their intent. Not even close. And most importantly, we were done because I knew that to continue on was going to be really difficult for my girl. She had made her choice and I planned to honor it.

So I gave up. And as much as I’d like to claim that it didn’t, it made me really, really frustrated. And sad. And somewhere deep, angry.

I didn’t want to be angry. And anger wasn’t warranted or justified or right, but there it was.

Because I had looked at the interviews with the autistic people who had already posted and by God they lived in another stratosphere than my girl. And they struggled too (and by no means do I mean to imply that they struggled or struggle any less or any more than my girl) and God bless them, they talked about those struggles and I was grateful – overwhelmingly grateful – for that, but so too I was so painfully aware in that moment that they COULD talk about their struggles and their bliss and their anxieties and their superpowers and the ways they like to socialize.

And that is just not where my girl is.

And maybe someday she will be there – I believe with all my heart that someday she CAN be there and we work and we work – oh how SHE works – to get there. And if she gets there, great. And if she doesn’t, fine. But it’s not where she IS. And in that moment, that mattered.

Because I looked at those faces in the posts and I knew – so palpably I knew – that they were – that they ARE – the faces of autism. And yet – they are not OUR autism.

And that’s OK. It’s more than OK, it’s wonderful, right? Because aren’t I the one who preaches (again and again and again) that autism is one word but there is no one autism? Yes, I am. Because I believe down to the depths of my soul that it’s true – that autism comes in so many and such widely varied manifestations as to make their shared title a ludicrous farce. For God’s sake I say it so often I could type it in my sleep.

But nonetheless, I had this moment. This awful, ugly, human moment where I wanted to stand up and shout, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my girl!’

And I hated it. But so too I was grateful for it. Because in it I saw the mothers and fathers and the autistic adults and their siblings who read about my girl – my girl who talks – by God she TALKS! – and who reads and who is identifying emotion and practicing self-calming and connecting and Jesus, making a friend, and I see them shaking an angry fist and saying, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my child!’ 

And I felt it. I viscerally, painfully, intensely felt it. What it must be for the parent whose child has no words, who feels as though they live under siege – desperate to keep their autistic child and his siblings safe, cleaning feces from the walls again and again, awake around the clock, saying, how DARE you? How DARE you present your shiny, happy story to the world and say, ‘This is autism’? Cause that sure as hell ain’t OUR autism.

And in that awful, ugly, human moment I got it. And I wanted to apologize to half the world and curse the other half and then throw up my hands and walk away in defeat  – because HOW? How the hell do we do this? How do we explain that they’re ALL autism? Cause ludicrous farce or not it’s the only word we’ve got.

And then, as so often happens when we allow ourselves to feel the things that we don’t want to admit to feeling, the shattered pieces began to come together and just like that, it all made perfect sense.

I realized that it’s exactly why TPGA needs to keep running those fabulous interviews with the brave and wondrous people who are willing to bare their souls to tell the story of autism – the beautiful, frustrating, complicated, messy, overwhelming story of autism. To break down the walls, to find understanding and compassion and validation and celebration and support and community and all of the things I want so badly for my girl.

And it’s exactly why I need to keep writing – at least until my girl can tell me to shut up or join me or take over and write for herself if she so desires. It’s exactly why EACH AND EVERY ONE OF US in this community has to keep talking. To each other and to everyone else out there who we and our children will encounter.

Because autism is one word, but there is no one autism.

This is our autism.

What is yours?

Photo by David Land

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98 thoughts on “our autism

  1. It’s posts like this that keep me checking my inbox every morning, waiting for your words.
    Your honesty, your LOVE for Brooke….comes through in every sentence here.
    As a parent of two boys on the spectrum, I swim in two different parts of the pool. And I will keep writing and talking about them – their amazing strengths and frustrating challenges – to anyone who will listen. And when they are older, they can do the same. if they want.
    I am forever grateful for you because you say the words in my head. You make me a better parent.

  2. Thank you for writing this. You took soft words and hard words and questions and knitted them together in beautiful, complete way. I appreciate the truth-telling and the acceptance in this post.

    Dixie

  3. WOW! I loved that, truly! I look around and see how different autism looks and I finally feel that people have a much better understanding of what our autism looks like, and no longer have the “Rain Man” image as their only point of reference. Thank God for that! My son has been educated in our public schools with the needed supports. However, everyone knows that he is different, and that has made his life easier believe it or not. I feel like because his autism is visible and auditory ( yes he flaps when excited, hyper-focuses on things, and verbally stims) people gain an understanding quickly and give him a break. Our son has a great personality and people do gravitate towards him, he never forgets a name and will remember if you have pets and know their names as well. He makes people feel special when he hasn’t seen them for years and he knows their name. That is his gift, he is ours. Autism looks different with everybody, and I feel at least in my community, people are gaining that understanding because of a huge push in autism awareness initiatives. Ten years ago my perspective was not so bright. I refer to those days as The Dark Days of the Diagnosis. All I wanted to do was hit the brakes and reverse time. Thank goodness that period was relatively short-lived and we soon hit the ground running with intensive therapies. As the years have ambled along, I have been more than happy to tell our story in the hopes others will see themselves in it and find what it takes to push forward and keep pushing!

  4. Thank you for this. I too have been reading those interviews thinking similar thoughts. Feeling that our family isn’t represented there, despite my lovely little boy being smart and delightfully cuddly with words and sentences, he would not be able to answer those questions. He cannot tell us about his school day or why school makes him sad. Or maybe he would make something up that seemed to resemble answers and the truth, but we couldn’t rely on it because sometimes he just says things that are not exactly reliable. And then, as you, I “got it” at least a snippet of how some of the families with pre-verbal or non-verbal beautiful children see the world. I think that you should add your post to the TPGAs site just so other families don’t feel so underrepresented and alone.

  5. Your raw honesty is incredible, Jess! I have to wonder how many nine year old children are able to tell their stories.

    Love you,
    Mom

  6. Honestly, it’s this way across the disability spectrum. To a mom who’s child has a LD, it’s tragic and tough in much the same way as a child with much more significant conditions (think trach, g-tube, CP, etc). We all have to be compassionate and understanding and meet people where they are, not where we are. nice post…..you got it.

  7. Beautiful, honest and so very true. The spectrum is wide and no two journeys are the same. Each family has it’s own struggles, pain, heartache, success, joy and milestones. We must honor and respect all of the stories, because even if they are not our own, they share a common thread. I know too that our autism has changed and evolved from my daughter’s diagnosis at age 3 to 13. The autism we lived back then, is not the same one we live now.

  8. I took my older “typical” daughter to a Special Olympics event where lots of young people living with Down Syndrome got up in front of the audience and talked about what Special Olympics meant to them. After it was finished my daughter told me that Molly would never be able to do that. Yes, it’s true. That particular day she wouldn’t be able to because of her anxiety. But I have lots of hope for the future. She continues to make progress, to understand the world and what she needs to do to function. She tries hard every day. So yes, I totally get what you are saying but our kids are all works in progress. They are moving along at their own speed, not ours. At 15, Molly is doing things I never would have imagined. She even is self reflective! And last night, she worked with a new speech therapist focusing on social thinking. They told me she wouldn’t be able to sit for more than 25 minutes and Molly worked with them for 45 because she liked it so much. Little by little we make progress!

  9. Thank you for saying this, putting it out there again. It needs to be said. And thank you for getting it. It’s painful but important too. And I still ole this picture of you’re precious girl.

  10. I agree that you should use this post as your published interview for the TPGA. It is truly an honest glimpse at Brooke’s autism. It is also a true glimpse at how parents or caregivers can have similar and different feelings in their daily experiences with autism. I really get what you are saying here. I also like how dlgreene described how “autism has changed and evolved from my daughter’s diagnosis at age 3 to 13”. This is true for our family as well – my oldest son was diagnosed at age 8 and is now 15. There has been much growth and learning and change but he still has challenges due to his autism but he has conquered many hurdles as well. You have already experienced this as well – think about how far Brooke has come. She will continue to achieve and conquer through the years.

    We have a 5 year old son who has been diagnosed with PDD-NOS and his autism is a whole different kind of autism experience from his brother. So I guess you could just say we are 1 house 2 autisms. And we will keep talking about both of these boys and their autism.

  11. Oh, yeah. And ouch.

    I find one of the hardest things is to resist looking left or right (just one little glance?) to the other kids, to keep my focus every day on the boy in front of me and his path forward.

    I’d like to say it’s discipline that makes that focus possible, but it’s more pavlovian. Every time I give in to comparison, it smacks me hard. A kid I thought was doing so well–why is he in this program anyway?–dissolved into 17 kinds of mess pretty quickly, and in ways that made me ashamed of my judgment. A kid I thought my boy had surpassed in one respect has blossomed. And I wasn’t as thrilled for him and his family as I should have been. Smack, smack, smack.

    But when I do focus on just this glorious child of mine? The rewards are endless, even when the days can be very long indeed.

    Pretty sure this isn’t what John Elder Robison means by “woof,” but I am definitely Pavlov’s doggy in this.

    Karin

  12. Wow, wow, wow. Yes, I get this…I felt this. I have often struggled with this. I grew up seeing only my brother’s autism, which was very severe. As an adult I’d see people with autism and hear their complaints and want to scream, “What do you have to complain about? My brother still injures himself and can barely communicate his basic needs.” Having a son with mild autism has opened my eyes to how broad this spectrum really is. My son at 4 is already more verbal and conversational than my 30-year-old brother. Yet he has his own struggles. Every day I pray for more compassion and for less of a judgmental heart.

    • Deb, I could have written your comment. I nearly cried reading it because goddamn I know EXACTLY what you’re talking about. My ASD boy is 19 now and though he’s going to need to be in a group home, he CAN talk, he CAN take care of his daily life, he CAN have a conversation (such as it is). My brother, who is now 30 can barely manage to go to the bathroom by himself. Thank you….

    • Deb, I too have a 32 year old brother (my only sibling) with profound autism, who is nonverbal and requires one to one assistance for all of his daily activities. I also have an 8-year old daughter with Asperger’s who surpassed her uncle in verbal abilities at age 3. I was in complete denial when my daughter was diagnosed, because to me autism was my brother. Now that our family has lived both diagnoses, it’s clear that while the challenges with each are different, they are both very real. Hugs to you. I’d love to hear more from sibs of people on the autism spectrum who have also become parents of kids on the autism spectrum.

      • Suzanne, thanks so much to your reply (I responded to Cassandra as well). It’s interesting to hear from others who have a sibling and child on the spectrum…I haven’t found many, and it’s nice to not feel so alone. What happened with you was just what happened with my parents re my son…they were in denial because his autism looked sooo different from my brother’s. To this day it’s still hard because I feel guilty complaining about issues we have with my little guy when my brother’s are so profound. I too would love to hear from more people out there in a simlar family situation! 🙂

  13. Thank you so much for writing this. I can totally feel the same feelings. I have a two year old with an ASD who is extremely high functioning. What I get all the time is “this child is not autistic” just because she is brilliant at certain things and wants to be social. but as her parent, I know that if she gets overheated in the middle of the night she will lose it and go through her specific “fit” routine. I know that when she is happy she “canters” like a horse in a big circle and then the circle gets smaller and smaller until she is spinning. I know that sometimes her feet and arms hurt and she arches her back in pain when it does. But people see the child who can overcome those things mentally and can count to 15 at age 2, who knows shapes and colors and who can sing the scales. They don’t even notice that she rarely gives true eye contact for more than a split second because they have a vision of what an “autistic” child should be. While I don’t want my child to be labeled and I am grateful that my child is so well off, the autistic community deserves so much more. The world needs to know that the definition of autism does not fit inside of a box. It does not present with specific symptoms like other disorders.

  14. This post is completely, utterly, honest, and raw…and touched me more than I can adequately put into words. You managed to capture my inner monologue lately…*gulp* So often, I look around and read and see these stories…and I want to shout, too. And I am sure there are parents who read of my son’s abilities and they want to shout. Again, I thank you for helping me feel less isolated…for helping me know I am not alone…and that so many people have similar feelings. Thank you.

  15. i think instead of publishing an interview…which is great, but doesn’t fit the language your little one speaks…they should publish this post, would be perfect.

  16. Thank you for sharing and responding to the many faces of autism issue. It is unfortunate that you, and others, feel they must apologize upfront for feelings that we all have at some time or another. “The Autism Wars” in the blogosphere make it very difficult to just say what you mean without fear that you will cause someone else to object.
    My daughter is 25 and severely affected by autism in the sense that she does not speak, has no sophisticated means of communication and therefore no friends, no superpowers, no website, no blog of her own. I am her voice until we can find a way to support her to speak for herself. Am I envious of those families who have it seemingly easier? Sometimes I am frustrated that most of the voices people are hearing are of the higher functioning group and they are so loud that our soft pleas for help go unnoticed.
    When she was younger and I had more hope I too compared our challenges with those of her peers. Now I just love and accept and continue the fight for more support, better training and hope for a happier life for all of us.

  17. btw: if you could envision the perfect interview…one that brooke WOULD engage with…what would it look like? doesn’t even have to be questions, could be prompts for her favorite bits of script, or a series of her favorite video clips, with her reactions being the “answers”…i don’t know really, just trying to think about what an “interview” would be, for those who communicate with ways other than words. i’d love to see a jess-created “interview” that fits her style of expression, whatever that would be.

  18. Oh I do hope you submit this as your post for TPGA! It shows a different place in autism and I do think they try to show that. This is not where my son is either, though I do hope he’ll be there someday. Part of what I hate about the autism community is the in-fighting about what autism really is or who has it worse or “how dare those verbal kids’ parents talk because my kid is non-verbal” or “how dare those parents of non-verbal kids try to present themselves because they’re taking the stage away from the adults with autism” and on and on and on.

    While I am extremely active in the Marfan community, I shy away from the autism community for that reason. I just don’t like the arguing. It defeats the whole point for me. I don’t want to feel ashamed of telling our story (my son is verbal but, as you understand, there are still many issues). And as someone else pointed out, there is a spectrum with MANY disabilities. I am more minorly affected with Marfan syndrome but I rarely feel like that means I don’t deserve a seat at the table. My toddler is also affected and we have a group of friends whose children are severely affected but they never make us feel like we don’t belong, even though their children are having surgeries now and my son won’t for a long time.

    So I guess what I’m trying to say is thank you for how you addressed this. Thanks for acknowledging that we’re all just in different places but those are all still autism. I wish I knew what the answer to bridge the divides are, but I think it starts will just recognizing the differences and the pain and that it’s ok to feel those but at the end of the day we’re all on the same team. Thank you.

    • it’s good to see you here, Maya, did you find Jess from my post in the group? I hope you find as much here as I do..Jess’ posts are amazing and telling of her story so clearly and honestly. hugs It’s good to see you, friend.

  19. Perfectly said, Jess. Thank you for speaking such raw truth. We spend an exhausting amount of time judging each other .. feeling invalidated by other perspectives. I’ve been guilty of that many times over. But isn’t it time to stop comparing and just move forward toward solutions? And won’t the truth, as ugly or as wonderful as it is, get us there? It’s not a competition. It’s a quest ..

  20. Thank you for writing this, Jess, and for making the conversation bigger than our site and series. We hope some of the posts coming up this weekend will speak to folks who want to see “their autism.” And if you don’t see it, and would like to participate, please email us at thinkingautism@gmail.com — we can get creative (as you’ll see), and certainly don’t mind posting more profiles than April has days.

  21. I have had those moments – where I was frustrated in a way that is completely out of proportion to the frustration at hand and more about me than about the issue (not sure that’s what you feel but it’s what this post brought up for me). Thank you for your candor, as always.

  22. Please do use your post as a substitute for the TPGA interview. By doing that you are representing us in there with ALL our autisms. It’s so wonderful to hear the different voices and experiences in these interviews and blogs. This insider information helps me to be a better parent to my boy, but like you…I wish, I hope and I work damn hard to try to give my child every chance just to get some words out, to say them so they are understood and to put them together. Our autism? It goes something like this:
    http://lovemanytrustfew.wordpress.com/2011/10/19/36/

  23. “Ours” is shiner than some, harder than many. I find myself in converstations where we are “successful” as can be compared to peers that are heartbreakingly alone or self injurious.

    “Ours” is a rock star in a specialized day school for children who will likely never live on their own and will need care long after we are able to care for him.

    “Ours” is in a specialized day school for children whil will likely never live on their own and will need care long after we are able to care for him.

    For us, we TRY to reach forward with one hand to accept the help and guidance of those who have gone before us and to reach behind with the other to help those coming along behind.

  24. GREAT post. Not even kind of @sshole-y. Jack struggled with those questions too and I had to modify them and he basically answered every question with, “I like video games,” and when I read the paragraphs-long answers of some of the other participants I felt a little bit like we failed the assignment. But then I realized that we didn’t. That is Jack. That is HIS autism. That is HIS mind and that is wonderful. And, that, I think is what TPGA is trying to show.

    You have this wonderful way of being able to see so many perspectives and make us all think about this complicated ball of yarn in the way that it is meaningful to us and I love that about you.

  25. We all want to connect with people who deal with the same issues we have to deal with everyday, maybe that is why you felt angry. My girl is high functioning but so many of the things you write resonate with me too. I guess that’s the issue with the spectrum. We all have a diagnosis, but no two children are the same and everyone has a different story. That’s why I love to read your posts and the comments, because we all DO connect that way. LOVED this post!

  26. Thank you–it’s like you know me personally and knew how much I needed to hear these words this morning. My son was formally diagnosed yesterday with autism and with significant cognitive impairment. Each child is so unique….

  27. Thank you for writing this. This is exactly how I feel but have never had the words to express it like this, so honestly and beautifully!

    I totally agree with you–each person with autism has their own version of it. Heck, I feel like we have multiple versions, depending on the day. Some days my son seems to fit his Dx of high functioning. Other days or hours, he’s not so high functioning, after all. As cliche as it sounds, for us, it’s the roller coaster of very high highs, and pretty low lows and all of these can happen in the span of a day or even a couple of hours.

    Thanks for the encouragement to keep telling our story.

  28. As always…a beautiful post!! I think those feelings of anger are something that we all feel at one point or another. The spectrum covers such a huge range of symptoms and severity that it is hard for those of us who live with it to really grasp what all autism is…much less have a united voice, and nearly impossible for those that have no personal experience with it….making it easier for them to just dismiss it as a “fad diagnosis”, “poor parenting”, or whatever else seems like an easier explanation. Which leaves so many of us feeling like we are under siege, because so few seem to really understand our particular situations.

  29. Jess, I’m a woman on the autism spectrum, and if it helps any, if someone asked me what I like to do with my friends, my honest answer would be, “I just like being with them.” It doesn’t particularly matter what we’re doing (although the environment in which we’re doing them matters quite a lot). Perhaps the difference between Brooke and me is that I’m willing to bow to social pressure to manufacture the expected answers, and she can’t do that. Yet. But she gets a ton of points for being honest and clear.

    I also want to share that I declined to answer the TPGA questions because they missed the mark for me regarding the ways I think about my life. I’m a very articulate person, but it felt really clunky to me to answer some of them — like fitting a square peg in a round hole. It’s possible that Brooke was also feeling similarly. I’m not suggesting that Brooke doesn’t have challenges when it comes to articulating answers; I’m just pointing out that some questions lend themselves more easily to answers than others, depending on who you’re talking to.

    • Well said. And I agree that those questions needed a few more go-rounds in order to make sure they included everyone.

  30. Thank you so much. For writing, for being a mom of a child with autism. For just being awesome. I read your blog every day and I cannot tell you how your words have affected my life. My son is on the spectrum and he is 13. He has few words, but no shortage of emotion. I am the mom who cleaned feces off her wall. Who survived on 3 hours of sleep or less for years. That is our autism. Thank you for giving us a voice.

  31. thoughts:
    1) I’m actually puzzled as to how anyone would think you’re an a-hole after that. Sounded just fine to me! 🙂
    2) You wrote: “they ARE – the faces of autism. And yet – they are not OUR autism. And that’s OK. It’s more than OK, it’s wonderful, right? Because aren’t I the one who preaches (again and again and again) that autism is one word but there is no one autism?” I don’t think it’s wonderful – I just think it is what it is. Just as the neurotypical population gives us all kinds of people, it is what it is. Not horrible. Not wonderful. Just is.
    3) I’m not so crazy about a few of those questions because they do seem skewed to a particular population within the community.
    4) the message about “our autism” is so powerful, and one that we need to band together to extend that message. Once we get people knowing about autism (and I met a park ranger last summer who had never heard of it!), our next step, which we’re into right now, is to make the world aware that there are actually all sorts of autism. You did an amazing job with this post. Thank you. xo R

  32. Pingback: our autism « a diary of a mom | My Autism Site | All About Autism

  33. Thank you so much for sharing this. Your autism is in some ways very much like our autism. My darling girl would not have been able to answer these questions in any way that made sense or that truly expressed who she was. And I love Brooke’s “You’re all done asking now.” My daughter is 11, and would have said the same thing a few years ago. So often I fluctuate between anger and sorrow for her struggles, and guilt for complaining when there are so many nonverbal children whose parents would give anything to hear the words and thoughts she can now express. A few years ago, she started asking “why” questions. I was so thrilled and amazed – she could actually think of something that was not present, that had occurred earlier, and ask for clarification or explanations. Wow! Then I’d remind myself that most kids do this when they are 2 or 3. So I have to ask myself “Why?” Why do I do these comparisons?

    Thank you for sharing your feelings and your revelations. I hesitate to even post this, because it says that I am angry and sorrowful. And I don’t want people to think that, because my daughter brings me so much joy every day. And it is clear that Brooke brings that same joy to your life.

    So thank you.

  34. You nailed, in this post, exactly what I’ve been feeling for the past few months. My son does not talk, is impulsive, a runner, and can be aggressive. He is not even five so hearing the storied of autistic people is both inspiring and frustrating. But I can’t also help but think, “but you’re not Moe!”

    Thank you for this piece.

  35. This is wonderfully said. Moe does not talk, is impulsive and is a runner. He is not quite five, so reading the words of autistics gives us so much hope. But it doesn’t always reflect our experience and that can be hard to grasp.

    Thank you for this.

  36. That battle rages in me all the time. Being angry/jealous etc at what other autistic kids can do that my son can’t do but then I also feeling guilty about having those feelings because even though my son doesn’t speak and basically doesn’t eat, he also isn’t self injurous or prone to running away or aggressive with other people and he lets me hug him and he’s flexible with his routine and he enjoys school and he is happy and he’s otherwise healthy and I KNOW how lucky we are. When I read people’s blogs, most of the time I don’t feel like they represent me (my son) but that’s ok. I still love to read and I’ve learned SO MUCH from reading other Moms blogs and since I write about our life, we’re being represented somewhere. Hey … we’re all human right? We gotta be allowed to feel what we feel and I think it’s great that we get to share our very individualized experiences with each other.

  37. Isn’t it funny how suddenly we now have to apologize for having feelings that are not all butterflies and sunshine? Like by having sad or angry or lost feelings we are ‘dehumanizing’ our children? I wonder when it happened that my being human and having feeling became wrong? Because I too fear admitting anything that might be remotely perceived as negative for fear of the tornado-like backlash of the Autism Wars. So thank you for your honesty and your strength.

  38. Pingback: Our Autism « The Danke Project

  39. You are not an @sshole for saying it. Far from it. Thank you for these words.
    our Autism?
    Ours is palpable. Through every moment of every day. My girl struggles to voice the most basic need or want. She tries and works so hard. She can finally say ” I want _____”. Our Autism is ear piercing screams. Tantrums. Frustration for me, but much more so for her. No parties, no mall, no movies. it’s too much for her to process. Stims, and odd rituals.
    It’s watching my 6 month old smile and laugh and babble… just begging her big sister to interact, and rarely ever getting what she so simply wants. And worrying how this is going to affect her life.
    it’s stress, and worry for Cymbie’s future. It’s celebrating every accomplishment as the huge deal it is.
    it’s vitamins, supplements, gf/cf. Speech, ot, school full time. Endless research and panic attacks in my sleep.
    it’s so much more but I am pretty much at a loss for the words.

  40. The other day I was commenting on a post under the Community Page and I was jealous. I was jealous of another person’s autism. Being proud of my son is easy but sometimes the grass looks greener dammit. I hate jealousy, an emotion based solely on perspective. But there it was. And sadness wasn’t far behind. It didn’t last long, though. By the end of my comment those feelings had diluted down to nothing and there was more than enough happiness and pride in me for the child of a complete stranger.

    I think that’s because of you, Jess. 4 years ago that jealousy would’ve ran rampant in me, because all I’d have to compare is our autism and their autism. It would’ve eaten away at me to see someone so much higher on the spectrum than us. But not anymore. You and your loyal commenters have taught me that there is no one autism, and that keeps those “but-it’s-not-fair” emotions at bay. You have given me a community that lets me see all of us.

    You’re a game-changer, and you’re allowed a moment of anger. Thank you for this post.

  41. I loved this. At the start I laughed in empathy. I have similar experiences with my boy. “How did you hurt yout toe?” “I hurt it.” “Yes, but how?” “I hurt it.”

    And then the wince, he talks the hind leg off a donkey and in some ways I feel like a fraud because my autist is HFA and I know others who would give anything for a single word, for a direct look. My experience of autism is not theirs, but every victory, every shadow is no less real than theirs. And I know each experience of autism has it’s own challenges.

    • yes, every time I woe-is-me about my boy’s struggles, the realization hits me that too many people would feel blessed to have our version of autism. it’s hard to realize and accept (instead of just say) that our challenges are valid. Every time my boy looks me in the eye, I have HFA-guilt and think of all the parents who don’t have that.

  42. But this is precisely why you *need* to send it (Brooke’s interview), as is, unedited… to show ALL the different types of autism.

    There is so much I want to say when I read your posts. I keep telling myself I’m going to write to you, in my mind I know it will be long and rambling. But I don’t. I say I don’t have time, but I can carve out time if I had to (give up Draw Something one evening). No, I know I don’t write because I will cry. But I just want to say that each time I read your post, the honesty, the rawness, the pureness of that frustration and anger, and the brightness that is love for your girl, your girls, i am moved and I think “there is someone else out there who gets it.”

    Thanks.
    cg

    • agreed! i just assumed Jess would turn in Brooke’s answers. Never occurred to me that she may not. I hope she does and I hope they post them, because I’ve been reading the “Slice of Life” articles and thinking the entire time ‘this is not our autsim’. I got my boy to answer the questions but I had to do it in more than one sitting and with lots of prompting (and I may have bribed him with Easter candy). My son is HFA but he very often announces he is done with something before it’s actually done.

      Also agree with your 2nd paragraph. I agree with you whole-heartily!!

  43. I had to walk away from this earlier because it felt like a scab was ripped off of a wound I didn’t want to remember I had. Then, the morning routine took over and here I am back and reading all tehse amazing comments and realizing that we ALL have some version of the wounds which we fear revealing to one another.

    I think Stimey captured the essence of what I wanted to say with this: “You have this wonderful way of being able to see so many perspectives and make us all think about this complicated ball of yarn in the way that it is meaningful to us and I love that about you.” YEP.

    There are times I am in such deep, aching despair about my son’s struggles, especially to make himself understood on the most basic level. But there are others in which I rejoice in his easy-going nature and his willing and easy affection. It all balances out somehow in some cosmic scale we cannot know or see. And every single one of the faces of autism matters deeply and deserves to be known and loved. That’s my takeaway. xo

  44. also, here is our autism…

    Answers to the Slice of Life questions…

    1. What is your name?
    Jeff (we call him Cameron but his legal first name is Jeffrey)

    2. Do you have a website?
    no

    3. What would you like a one-sentence description of yourself to say?
    I would watch T.V.

    4. Do you have any autistic superpowers? What are they?
    I can’t fly or pick up heavy things.

    5. What are some situations that make you happy or satisfied?
    Watching T.V. and playing video games and riding bikes.

    6. What are some situations that make you sad or anxious?
    Not watching T.V. and not playing video games and not riding bikes.
    (duh)

    7. Are there specific topics you find particularly compelling?
    I like to think about my new poster. (gave him an Ironman poster
    yesterday)

    8. What are your preferred ways to be social?
    Go to the park.

    9. What traits do you prize in a friend or companion?
    Friends can play games and play tag and sleep.

    10. Are there parts of your life you wish were easier?
    I think it’ll be easier to watch T.V. all day.

    11. What’s the next big goal you have for yourself?
    a DS game. (this is Cameronease for ‘beating a DS game’)

    12. What does bliss feel like to you?
    My favorite thing to be very happy is inviting a friend over.

  45. Thank you for your words.. as usual I cried again (really got stop reading this at work.. haha). It was great to read that I am not the only one who feels this way. So often I have wanted to scream at the sky “That is not our autism!!”.. Our autism last week was Spring Break and the idea of wanting to take my son on day trips of fun things for him, so I could experience his joy. It all started out wonderful but as we approached Friday, the frustration of lack of schedule (even with lots of prompting of what our schedule for the next day would be) and time away from school built to a terrible and terrifying frenzy. He broke.. and as usual, it broke my heart to see. There is nothing so helpless as to see your 18-year old son in such intense pain and frustration that he is worked up into a sweat of intensity and crying. You ask questions (he is mostly non-verbal), you try to talk calmly, but at that point, none of it works. So scary, so heart-breaking and then the walking on eggshells for the next few days to make sure it doesn’t happen again.. to bring some order to his world. To make it alright again. To see that bright smile, the whole-body happy again. So I say, THANK YOU for your words and continually changing people’s thoughts and feelings on autism. You ARE a blue light in this world to me 🙂

  46. Well said – as always. You are the TPGA – (Thinking PARENT’S Guide to Autism) – it can be the companion volume! Thank you.

  47. I think it would be very valuable to submit her answers, including “you’re done asking now.” Different people have responded to the questions differently; the point of the series was to show diversity. These answers have a place there.

    I think it would have been fine to adapt the questions to make them more concrete for receptive language challenges, too.

  48. Pingback: This is our Autism – The Aspie Side of Life

  49. I understand what you mean with this post – there are sooo many “autism stories” that don’t sound like my daughter’s & I have been told time & time again that my daughter is “only just autistic” or “light on” (because she is verbal, physically capable & has no intellectual delays, but she does have sensory, emotional/anxiety, social and behavioural issues which are hard for her to cope with), sometimed by people who want to reassure me that her struggles won’t be as numerous as other children who are at “the other end of the spectrum”, and sometimes by parents who have kids at “the other end” that don’t see why she/I have any struggles in our lives.
    My dd’s struggles seem very similar to your dd’s, and I really appreciate being able to read another perspective of a mother with a daughter that struggles on her level, & knows that it doesn’t have to be the same as anyone else’s struggle to still qualify as a struggle.
    Your blogs give me hope in the same way you reading these other ones give you hope – although our daughters aren’t “there yet” I too believe that they can be – when they’re ready, and with our help, guidance & unconditional love.
    Thanks for sharing your world with us every day. It really helps me cope with mine by looking outside it!

  50. The autism in my house? It involves blood, trips to the ER, sleepless nights, dr. visits. Superpowers? I wish.

    you have beautifully expressed my feelings of envy,grief and joy as I have travelled through almost 20 years with my son. He’ll never have a blog, but he has numerous people who love him, and he has changed the lives of many, opening their eyes to the lives of those who are different.

  51. Tracy ~ Brilliantly said.
    15 hours ago · Like · 4

    Helen ~ absolutely
    15 hours ago · Like

    Michelle ~ so very true
    14 hours ago · Like

    Brittany ~ You speak to my heart!
    14 hours ago · Like

    Jeannette ~ Wonderful and so honest…refreshing!
    14 hours ago · Like

    Janice ~ I get it. In fact, reading your “interview” is pretty hard. D can’t talk to me at all. I have be his voice and half the time I’m guessing. He doesn’t really make friends he can play with because he doesn’t know how to play yet. His meltdowns. Sigh. Let’s just say sometimes I pick long sleeves in summer. That isn’t happy autism. And soo many people judge us. Like if this hurts or we suffer, we don’t love him. No, it hurts because we do. We suffer it with him. Even among the autism community, I sometimes get frustrated, positive spin is not gonna fix this. I get through one day, one hour at a time. Others never get it. For us, autism is an endurance sport, only the line moves sometimes.
    14 hours ago · Like

    Justine ~ Wow, what a powerful post. So raw and so real. It’s amazing how none of these kids are even remotely the same but all fall under the same category. My daughter is non-verbal, and I have to admit that I do feel a twinge of envy when I hear of kids with Autism who do have words, but at the same time I realise that we’re all fighting a unique battle which can’t be compared in any way shape or form! We all have our hard times and we all have our blissful moments, and we’re all working towards the same thing – a better life for our beautiful kids 🙂
    14 hours ago · Like · 2

    Tara ~ Wow. I don’t know what else to say. I will link from my blog and respond this week. Really amazing and so very true.
    14 hours ago · Like

    Lydia ~ I’ve felt something similar, Jess. Just for me, and my autism, the more I embrace who I am and how I’ve been created, the more I investigate what makes me who I am and why, the more independence (and contentment!) I’ve gained. I’m in a good place now. Sending love and a hug to you.
    14 hours ago · Like

    Eva ~ So true, I am always amazed that once a week my son attends a social skills group with 7 other kids that are ostensibly of similar status and yet when we mum sit and talk while they are in there, all our stories are different, similar in some ways but so dissimilar in others yet our kids have been grouped as closely as possible – there is definitely not one autism or autism experience nor our reactions to it – everyone’s reality is different.
    14 hours ago · Like

    Sarah ~ Well said
    14 hours ago · Like

    Tonya ~ My son can “pass” at times as not on the spectrum….and their are days where his social pain is do palpable. Or days when he doesn’t understand “Get me a spoon” unless I show him a spoon. People say I’m blessed with his progress and I feel guilty for complaining. But in those moments I feel cut to the heart. They catch me by sursprise.
    14 hours ago · Like · 2

    The Diary of Joni & Anya very enlightening
    13 hours ago · Like

    Janice ~ I don’t know how you do it, but you are able to take what is in my heart and write it more beautifully than I ever could. You are an amazing mother to both of your girls and an inspiration to me. Thank you.
    13 hours ago · Like · 1

    Gretchen ~ I feel that way much of the time I read your posts. I appreciate that you get it. That you get that there are so many of us who have kids that are struggling far greater battles. It doesn’t make it any easier for either of us. But it’s nice to be validated….
    13 hours ago · Like · 1

    Judith ~Love this, Jess. Perfectly said ..
    13 hours ago · Like

    Judith ~ We spend an exhausting amount of time judging each other .. feeling invalidated by other perspectives. I’ve been guilty of that many times over. But isn’t it time to stop comparing and just move forward toward solutions? And won’t the truth, as ugly or as wonderful as it is, get us there? It’s not a competition. It’s a quest ..
    13 hours ago · Like · 5

    Cathy ~ Amen Judith
    13 hours ago · Like

    Lena ~ Seasoned parents with ASD kids think one of two things when they read your posts. 1. Hang in there, you can get through this, it’s just like when we…… (Fill in the blank with my own kids related story). Or 2. Yay!!! I’m excited for you, albeit a little jealous because my kid is only…….(fill in the blank with my kids ability that is not quite there). When we were newly diagnosed, I remember thinking, even judging other families. Now I know better, losing skills is devastating, but common for us. As much as autism sucks and I wouldn’t wish it on anybody, it forces us to slow down to appreciate the world around us.
    12 hours ago · Like · 3

    Patricia ~ There is not one single thing in that post that would qualify you as an a$$hole. I agree, autism is just the word we’ve slapped on this, when, in actuality I believe there are fundamentally different things going on with our kids. My son is non-verbal and has his share of behaviors. But he understands most of what you say and is so darn sweet and loveable. I used to compare him to those kids in his class who could talk, write, etc. Then I saw those same “advanced” kids who had horrific behaviors, darted away in public, and had to have a set schedule for every part of the day. And I stopped comparing right then and there. It’s an exercise in futility to say the least. There just no way to compare. There is no one autism, as you say. I read some of these interviews, and I think “Wow, I really can’t identify with any of that.” Wonderful post, well said all the way around.
    12 hours ago · Like · 1

    Hike. Blog. Love. I posted on your post already, but I just had to tell you again…..thank you. Your words came to me when I needed them most.
    12 hours ago · Like

    Tiffany ~ Thank you again! You are not an a$$ at all. You are allowed to be human.
    12 hours ago · Like

    Alicia ~ Great post. I think about words all the time–using them, writing them, agonizing over the right one, and so on. I used to think about words every second of the day when my son did not speak. His world was not a world of words at that point in his life, his world was one of feeling and seeing. Maybe TPGA could alter the interviews up a little–focus less on words and more on feeling and seeing through photos and videos? After all, bliss might be difficult for some to use in a sentence, but bliss can be felt and experienced and captured in a beautiful photograph! 🙂
    12 hours ago · Like

    Elizabeth ~ This post brings to mind a recent infuriating incident I had with a parent of another child in my sons special ed preschool class. We were at McDonald’s play area and my Charlie was visibly excited when his friend “John” came in with his Mom (who I hadn’t yet met). As she and I were talking she asked why Charlie was in the special ed class. As I told her that he had autism she got a crazy disapproving look on her face and proceeded to inform me that he didn’t LOOK like he had autism. My first reaction was proud because of my attention to his needs during the past 2 years it was not obvious to others that Charlie is anything but typical. But the more she spoke of her own experiences with autism it became more and more clear to me that her opinion was more that I was putting an unnecessary and absurd label on MY child! We left McDonald’s and the more time passed I continued to get madder and madder … How dare she! How dare she assume and judge my skills as a parent and the abilities of MY son based on a 15 min encounter with him and with me! Autism is one word, but there is no one autism!
    10 hours ago · Like

    Confessions Of An Aspergers Mom Thank you Jess …one love ♥
    8 hours ago · Like

    Gail ~ Just yesterday, I tried to get my girl to describe herself. It wasn’t a complete failure….our autism is awesome and challenging. Thank you for being there, Jess. (((Jess)))
    8 hours ago · Like

    Terri ~ As always, you couldn’t have said it better Jess, and not once did you sound like an @sshole. I am so honored to have you for a powerful and resounding voice in our community. Thank you Jess, thank you.
    8 hours ago · Like

    Autism Story Book Doesn’t EVERYONE know that autism is a neurological disorder that impairs communication BUT makes people incredibly smart and gifted? Ah Ha! Just give them an IPAD to communicate and voila’ problem solved….Geez
    6 hours ago · Like

  52. thank you all so very much for your warm, generous, loving response to today’s post. i winced as i hit publish this morning, fearing that it was simply too raw, but knowing too that i simply had to share it. once again, i am overwhelmed with gratitude for this sacred space and all that we accomplish together every day. thank you.

    • Michelle ~ I thought it was great and heart felt and true
      6 hours ago · Unlike · 2

      Naomi ~ I absolutely loved it. Your raw is my real.
      6 hours ago · Unlike · 4

      Debbie ~ Your honesty, bluntness, and willingness to say what so many of us feel but can’t put into words is why I look forward to your posts each day!
      6 hours ago · Unlike · 4

      Tara ~ I love that… your raw is my real… so true.
      6 hours ago · Unlike · 4

      A Chameleon in the Spectrum keep on keepin’ on, Mama! Thank you so much for your courageous, open and honest posts!!!! ♥ ♥ ♥
      6 hours ago · Unlike · 1

      Our Life in Pieces It was beautiful.
      6 hours ago · Unlike · 1

      Amy ~ I wouldn’t have it any other way, its said just like it needs to be! Although there are times I have some more profanity in my thoughts!! Haha ♥ ya
      6 hours ago · Unlike · 3

      Kimberly ~ Wow…”Your raw is my real”….and ditto to what Debbie said…I wish I could put my thoughts into words as beautiful as you…I seem to just ramble …..you are a gift to not only your husband and daughters but all of us. I know you didn’t sign up for all of us…and I don’t want to put any more on your shoulders…we aren’t leaning on you….we are all just propping each other up from time to time. XOXOXOX
      6 hours ago · Unlike · 4

      Shannon ~ It was just beautiful. Raw is always beautiful, even if it hurts. XOXO
      6 hours ago · Unlike · 3

      Elizabeth ~ I’ve noticed that you oftentimes are unsure if your stories and thoughts are inappropriate and each time your friends respond with a wave of gratitude for your words. Please know that your words mean a great deal to many readers, friends, soldiers in arms. Thank you for what you do.
      6 hours ago · Unlike · 4

      Yvette ~ Loved it.
      6 hours ago · Unlike · 1

      Randi ~ Seeing this post made me go back to look for the blog post. Oh my! I LOVE it! My son does have words, but does not have the communication skills that Brooke does. You described my emotions so perfectly. Thank you.
      6 hours ago · Unlike · 2

      Denise ~ I felt validated because I have been knocked around quite a bit over my daughter’s diagnosis combined with other dx. I was beginning to feel like I really was crazy because my daughter’s autism is not the “stereotyped” autism which somehow doesn’t make it a valid dx. You made me feel validated and it would all be ok, somehow.
      6 hours ago · Unlike · 4

      Carmela ~ Your Amazing!!!! xoxo
      6 hours ago · Like

      Fi ~ I “shared” on my private FB and page. How could I not? so brilliantly written!
      6 hours ago · Like

      Megan ~ ‎”If you’ve met one person with autism, you’ve met one person with autism.” My son is very different from Brooke, but definitely autistic. My daily battles are different from yours, but our bigger battles are the same. I love that we can respect differences and support each other, because I think we all have in common that we are in the fight of our lives. Thank you!
      6 hours ago · Unlike · 4

      John ~ Do not ever wince or hesitate. You post whatever you want. By the way, my wife appreciates and promotes your post
      6 hours ago · Unlike · 1

      Diary of a Mom god, i love you guys.
      6 hours ago · Like · 3

      Carmela ~ ‎”Your raw is my real” my son is non verbal. he stims constantly and im trying everyday to heal him and fight this fight! YOu rock!!! Tell Brooke …I think she is wonderful amazing soul!! She is precious and amazing!!
      6 hours ago · Like

      Linda ~ Just had a chance to read today’s post, thank you Jess. Life IS Raw…thanks for being honest. We have all had those times where our autism is “better” then “their” autism and moments where “our autism” is just horrid. I think we are all allowed our moments of “our autism” sucks…cause you know what? Mine or Yours…it’s ALL AUTISM and it all HARD. Thanks so much for all you do!
      5 hours ago · Like

      Kristie ~ I read it with tears in my eyes, especially after having an emotional meeting with my son’s wrap around team today. My son has come so far but still struggles so much and at times when I watch those commercials I felt the same way. I am glad they r on cause they give me hope of what are future might be ( and i have come to acceptance that they might not be) I also know that when my son was non verbal they would of been a blessing to see but it isn’t what I see when I look at my son. I love my son and am so proud of him but he isnt where the children are that they show. I want to thank you for being so raw and truthful. You say what we all feel.

  53. Your words are always so powerful and resonate with so many. And I think we all have those moments. There are times when I am thankful that my boys are beyond certain levels (poop on the floor, for one) and there are also times when I resent those who are so much further yet the same age as my boys. I’ve had to learn to stop comparing, not only to typical children (like their older brother or kids at the playground), but even to other children with autism.

    As for OUR autism, my boys are the perfect example of how no two are alike and how you cannot really compare. My boys are identical twins. People who do not know them well often confuse them for one another because they look so much alike. But their autism is very un-identical. One uses words (albeit scripted ones) and one does not. One has mastered kindergarten inside the regular classroom (even scoring the highest reading comprehension test level of any kindergartner in his school) and one spends his day in his resource classroom with maybe 30 minutes in his regular classroom. One sleeps well, the other only needs about six hours of sleep on any given day. Two identical twin boys, same genetics and same environment, and two very different types of autism.

    And for the record. Love Brooke’s answers and would absolutely turn them in. They are her answers and her autism. And she is pretty amazing as she is right this moment.

  54. My little one (3) doesn’t talk. But she can sign up a storm. 🙂 She has different little quirks, but she hugs me and kisses me. Your words mean so much to me. All Autism is different. It is great to be able to be fresh and raw. Not everything is rainbows and unicorns. I have realized this, and I have learned so much about my life through her little eyes. Thank you for this. ((HUGS))

  55. That was wonderful. And I understand the anger and the joy, the frustration and the “a-ha!” moments. I may try to get our son to answer the questions, because now I’m curious as to how he’d respond.

  56. feel this every day because my autism is me the mommy who is on the spectrum…its easy to find rescourses for families with autistic children but not for families with an autistic mommy atleast from what I’ve expirienced…great post

  57. I totally understand where you are coming from. I posted on my blog last week about what Autism is to our family. What we deal with every day. And even though my 9 year old is verbal, he still has his limits. I thought of that today as I was cleaning him up after he didn’t realize he had gone to the bathroom in his pants. (Yes that was raw, but this is my world!) I love him just the way he is. Caring, energetic and totally unaware of his limits, just the boundless wonderful world he sees around him.

    Your post was fine. Nothing in it shocked me, I feel those emotions daily. after getting caught up on your blog I see that Brooke is amazing and wonderful and totally herself. Just as we want our kids to be. Autism or not. I am nit sure how my son would answer. Friends are one of the hardest concepts for him to understand. He chooses animals over people. Bless you as you travel the road ahead, I am so glad to have found your blog.

  58. How raw & beautiful & honest..thank you. I too have had these moments. Thank you for being brave enough to say what many have thought. And that picture is priceless!

  59. I think you should submit her answers. Perhaps with a paragraph from you describing your autism. You are right. The interviews already released are not your autism…but if you don’t submit her answers some people will assume that those stories are the only autism.

  60. A wonderful post and such amazing comments. My anger is something I can usually manage at this point but the jealousy still sneaks up and catches me by surprise. I’m never jealous of the abilities of my daughter’s typical peers at school. It’s always the skills of the other kids with autism. It sounds crazy when I think about it but so good to hear that I’m not the only
    one playing these types of mind games with myself.

  61. Thank you for not censoring yourself and inspiring each one of us to try and go out there and talk…really talk about our own experience of Autism. It’s not easy to be as “raw” as like that but congrats for letting it all hang out as my Mom would have said.

    I write my blog for many reasons but one of which is because you inspired me to step up and start telling “our” autism story…document it for my son…and share and in a hold hands with other parents as we all navigate the puzzle known as autism.

  62. Thank you for being so honest with us. Sharing your deep raw feelings about your beautiful girl help so many of us know we are “normal” in this jungle of autism we live in every day. I have had these feelings and try so hard to keep them in check and that everybody’s autism is “relative” to their situation. Because we started out with Max at 2 years old, I have naturally pulled away from moms who’s kids have moved into HF autism while we seem to be making slow progress with such hard work. I don’t like that I have done this. I am always walking a fine line between super positive mama warrior and “I hate autism” mom. Anger can bubble up…but it’s okay. We need to process, have a low, then come out of the funk to see clearly. I lived this post yesterday as I invited my mama warrior friend over with her son who is in Max’s class. It was raining and I knew she was isolated inside because her son is a “runner”. She said “are you sure…we’re a crazy mess”. “I told her to get their crazy butts over here ” She told me hide the breakables 🙂 Although my beautiful 4 year old son is non verbal, he can be calm and sit….her amazing 4 year old son has some language but doesn’t stop moving…she is chasing him all the time. He didn’t stop the whole time he was in the house. Two beautiful 4 year old boys…..and “two different autisms”. But that’s not the case…..we are all in this “autism” thing together. Thank you Jess…Thank you for making this mom feel okay about herself and those yucky feelings we deal with. Remember….Breathe and Believe 🙂

  63. Wow. It sounds like “your autism” is an awful lot like “our autism.”
    I feel somewhat ashamed because my son is so very highly skilled and I’m really damn lucky, and yet at the same time whenever I start to feel confident I try questions like those you asked your daughter and my son just cannot answer them either. He just cannot grasp what I’m looking for so he eventually casts around for some random answer to appease me. That happened again tonight. *sigh* Feeling discouraged, but so thankful to have found my way to your post tonight. So thank you.

  64. I read your post yesterday but I guess I was not in a place to hear it. Yesterday was a bad day for me. My baby was actually pretty good. I even took him to McDonalds (his favorite place). but before we could even get to the counter to order he ran screaming from the building as if it were on fire. I guess someone sniffed or had hickups, I don’t know. This isn’t new and other than that he was fine all day. But I couldn’t keep it together. I was in full on meltdown mode. I cried for 3 straight hours. How is my baby going to survive if he can’t even go into a restaurant. You see, mine is one of the blessed so called “high functioning” barely Aspergers kiddo’s. He is extremely smart and so capable. But he can’t hold a conversation unless he is teaching something (that let’s be honest, no one really cares about) and the environment (all environments) are toxic to him. It takes an act of congress to get him to leave the house. (he is now homeschooled) The rest of the world doesn’t see it. They know he is quirky and likes to keep to himself, but they look at me like, what am I so worried about?. They just see the intelligence. but what is the purpose of all that intellect if he can’t communicate effectively with other people. Or if he can’t go to work because of some random issue with sounds or lights or whatever….So I’m with you, I’m sad and frustrated and not so deep down angry. I can’t explain it, and I can’t find the words. Right now i’m just a shell.

  65. Jess, thank you so much for taking us all on your journey yesterday & today — from the raw place of apologizing & cursing to a creative place of celebrating and re-thinking.

  66. My son had a stomach flu last Saturday. He is 10 and preverbal. He threw up during the night several times. At one point, I put my hand on his belly and asked if it hurt. He pointed to his throat. Your thought hurts? He nodded yes. I was thrilled- this was a breakthrough. In the past, he only screamed when he was in pain- unable to communicate what hurt. I quickly got him some Motrin and ice water and I was so happy. I’ve been celebrating our happy vomit story all week. This is our autism. 🙂

  67. Holy comments, batman.

    I read your post yesterday and was just too overwhelmed with work to reply to it, but your autism and my autism are strikingly similar as you present them here. I think that, coupled with the similar family setup is one of the reasons I always find your posts so poignant.

    Plus, really, the writing. . . I read this post today, Jess, and it’s a post about another post, and it was still riveting. Just think how riveting a post about life would be!

  68. Pingback: Our Autism | love many trust few

  69. Far from looking/sounding like an @sshole. You brought tears to my eyes and goosebumps to my skin. I’m so glad I followed a link to this post. I can’t wait to read the rest of your entries.

  70. Pingback: Our Autism « crazyantelope

  71. I noticed that you didn’t use person first language in this article, saying “autistic people” and “autistic child”, and I’m wondering if that’s a conscious choice or 4:30 am fatigue? I think as there is no one autism, or any disability, it’s even more critical to use person first language.

    • dale, i tend to vacillate between the two, though i find myself using autistic to describe brooke much more these than ‘has autism.’ for a long time, i was adamant about using person first language, and then i began to read articles like jim sinclair’s on the topic, and talk to people like john robison (who addresses the issue in his book be different) and i began to realize that for many people, using ‘people with autism’ was actually causing discomfort. so i’ve got no hard and fast rule. i bounce between the two descriptions quite often.

  72. Pingback: Hey There Kitty

  73. Your post is amazing! It shows the character of autism in one beautiful child and the need to understand autism as it affects so many people. Your voice is powerful, and your daughter is lovely! Keep talking!

  74. I think your post was dead on. It is our lives..we all have our hard days. I know we are lucky, My son became autistic when he was two….yes became…it happened in the course of a week, he lost all speech (he was speaking whole paragraphs, telling stories, etc), he lost all ability to chew, lost all facial expression, lost emotions, etc……now at 13 he is incredible, it took years, but he can talk..at levels way above his age, he reads, he can ride a bike, he smiles and laughs, he WANTS friends, he can usually tolerate physical contact, but he has no emotional control, he gets violently angry, he has a foul mouth when angry, he becomes like a stalker when he befriends you, he can’t tolerate school, so he is doing k12 public school online……what breaks my heart is that he knows he is different, he knows people don’t want to be friends with him, he knows his siblings can go to school, play sports, have sleep overs, etc…..Some days I am envious of the faces of autism that are blissfully unaware that they are different…..but then I look into his eyes, and I know that as hard as it is, as frustrating as it is, as painful as it is, he is my son, and I am blessed and lucky for all the things he can do, and I feel bad that I am complaining when I know there are soooo many families out there that would love to hear their child speak, to have their child make eye contact, to receive a hug…what right do I have to complain or feel bad?

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