Parental Bullying and Autism

I have kept the specific blog, post and commenter who I refer to in this piece anonymous because my point is not about any particular person, but about a larger issue.  But first, a little background…   I was alerted to some negative comments left on a friend’s blog.  She had written a post about learning to accept her Autistic child.  It was a beautifully written, honest and loving post detailing what things had helped her find her way to acceptance and how that journey had changed her and her relationship to her child.  The path she describes was similar to my own, except mine took much longer and was more circuitous, but I could completely relate to her process.  It was my journey, only on speed.

I went to the blog to read the comments and read this:  “”You accepted autism, I fought it.”  I stopped breathing.  I felt as though someone had taken a 2 X 4 and rammed me in the solar plexus.  I became aware of the fluttering in my stomach with the simultaneous sensation of dizziness in my head, starting just behind my eyes and then a prickly feeling at the back of my skull.  I could feel my heart pounding.  I swallowed.  I read on.  The words are no longer important.  She  related how she had “recovered” her child as though it were scientific fact and then said that her thinking would one day be common knowledge and any other view would be considered “archaic.”

I had to stop reading.  I stood up.  I left the room, walked around, drank some water and came back.  I could feel tears welling up.  I swallowed again.  I was aware that my hands trembled as I read “Seems to me a thinking person would keep an open mind and once you accept autism…there is no more thinking that occurs…just the acceptance.”  I couldn’t work out what that meant as there was no logic that I could get a firm handle on, but the feeling those words evoked was one of failure and shame.  I had to make a conscious effort to take a deep breath.  I felt the sting of her words, like a knife cutting me open.  I sat there and read the other comments and another from her, reiterating her stance, her position.  Her story, no longer a personal tale, but one given forth as though evidence in a court of law.  And her love shining through it all, triumphant, jeering, condemning.  Her actions and the outcome of her actions worn like a medal of honor, the purple heart of parenting, pinned to her chest, evidence of her supremacy.

I could no longer hold back my tears.  My tears, physical expressions of my inadequacies.  As I cried, as the tears ran down my cheeks, dripping off my chin on to my shirt, I closed my eyes and felt all those feelings of pain, of sadness, of shame that had nothing to do with autism, but are feelings I carry around, despite how hard I try to get beyond them, feelings I have had my entire adult life, long before I became a mother.  Those feelings of not being good enough, not being worthy, not being pulled together, not having all the answers.  Those feelings of being “less than” all of them came bubbling to the surface.  Those biting words from that commenter cut through the fragile dam I so carefully constructed for myself.

“You accepted… I fought…”

I am better than you.  My love is stronger, better… I love my child more than you do.

This is bullying.  Words used to personally attack or intimidate another person.  It makes us think we are not as good as someone else.  For me, her words took me back to all those years when I believed all those parents who spoke with assurance, with superiority, without doubt about something that could not be proven or even replicated, stories that are not based in any science, but are “one offs”.  All those false hopes I had and mistook for the real thing.  False promises that lead me down a path of tremendous pain, ultimately harming my daughter far more than helping her.  The biggest strides I’ve made that have positively impacted my daughter are when I was able to completely accept every aspect of Emma and put down the whip beating me to change her neurology.   This is not to say we do not do everything in our power to help her learn, teach her to care for herself and try to give her tools she can use to flourish.

Richard said to me the other day, “Parents are spending all this time and energy trying to teach their kids to be normal, when they should be teaching their kids how to be themselves.”

My husband is brilliant.

Emma – September, 2012

78 responses to “Parental Bullying and Autism

  1. (((((((((((((((((Ariane))))))))))))))))))
    I get this feels like bullying. I get it.

    I only hope that the very place of love that drove the person to “fight” an inextricable essence of a human being will remain a sanctuary for the child.

    That is all that matters, isn’t it?

    Do we choose to cultivate a sanctuary, the possibility to teach our children skills we can teach, by not denying who they are?

    Or do we choose to fight all that is wrong “in” our children/”with” our children, scared to ever “not be on our children” lest they “slip away” and it will forever be “our fault”?

    Parents who bully other parents do so because they are so scared to be wrong… there is too much at stake for their position to be wrong and other parents’ position to be right.

  2. “People fear what they cannot understand.” And I suppose fear causes them to fight, too. Maybe one day when they understand, they’ll stop fearing and fighting.

  3. I read your blog frequently, but have never commented before. I just wanted to thank your husband for those words, “Parents are spending all this time and energy trying to teach their kids to be normal, when they should be teaching their kids how to be themselves.” Also thanks to you for sharing everything you have. For the record, my daughter is autistic, and I wouldn’t “fix” her for the world. She is who she is, and that’s the kid I fell head over heels in love with.

  4. Oh, Ariane, I’m so sorry. The bullies were making you cry and I offered up a philosophical socio-history of how they got like that. I wanted to prevent more of them from doing that with the magic concept-mirror that I still have faith also works outside of my own head, but I should have known, should just have hugged you. I am sorry. I hug you now. (((((((Ariane))))))) You are the opposite of inadequate, and since I do have access to special multidimensional verbal geography, I can rightfully declare that the opposite of inadequate is not adequate but Fabulous.

  5. You are so brave and amazing. I would have felt exactly the same way and I can totally relate to your feelings about yourself, about reading that awful comment, and about your daughter. Thank you for putting into words what so many of us feel. You and your husband are both brilliant 🙂

  6. (((Ariane)))) Knowing you as I do, knowing the journey you’ve taken to acceptance (and learning and benefiting from it myself!) I can see why this upset you so deeply. I’m indignant on your behalf, in fact.

    I remember being deeply offended by something Jenny McCarthy said years ago. It still echoes in my head – she said, “I did my research, and I fixed my kid.” As if any parent can just do this, easy peasy. As if our kid weren’t “fixed”, we weren’t trying hard enough. As if we all have the resources to do, and try, everything she did. I took it very personally! Now, I see that she didn’t really “fix” her kid at all. She tried therapies that worked for her child, she helped make him the best he could be, but she didn’t “fix” him. He wasn’t “broken”, like some discarded toy. And my daughter isn’t, either.

    As someone who is, ALL THESE YEARS later, STILL struggling to “accept” my child’s autism, let me just tell you something. I’ve met parents over the years. I have met dozens of parents over the years – some online, some in person – and of all those parents that I’ve met – YOU have had the biggest impact on me, Arianne. You truly have. This has been the longest, most painful journey of my life….and you’ve helped me begin to see a light at the end of the tunnel. Don’t get me wrong, I still have a long ways to go. But YOU were the one who started me on that path. It was you – I cannot stress that enough!

    Jane hit it on the head by saying this –

    “Parents who bully other parents do so because they are so scared to be wrong… there is too much at stake for their position to be wrong and other parents’ position to be right.”

    That is it, right there. The heart of the matter, beautifully stated. (Thank you, Jane!)

    Accepting your chid’s autism doesn’t mean that you aren’t, can’t, or shouldn’t be doing everything in your power to help them! That is the precarious position I currently find myself in. I desprately want my child to live a normal life someday – I continue to “fight” – with medication, therapy, and any means at my disposal, to help her. But I’m slowy beginning to figure out that you know what? She is who she is. If she never talks, is that the end of the world? Who’s to say normal is everything it’s cracked up to be, anyhow? I’m “normal”, and my life has been nothing short of a train wreck at times!

    At the end of the day, all anyone can ask is that we try the very best that we can for our children. None of us are in an easy boat, and it makes it all the more difficult when you’re judged and bullied by other parents.

    • Angie, you’re welcome. Ariane has also influence my perception and thinking as a parent and I am grateful for this blog and her voice.

      I’m not “at war with autism” and I’m not a “warrior mom”. I view my role as “teaching and making possible.”

      Making possible for a quality of life, making possible for developing skills, making possible my kid’s right to make his own mistakes versus having other people make mistakes for him, on him.

      I try to view extreme positions with compassion and on most days, I fail.

    • Awww, Angie, this is such a lovely comment. That makes me really happy to hear you say this. Thank you. Really. Thank you. I’m glad you’re finding your way through all of this and I know, I just know, Marisa senses it and knows too. Emma does and it makes me so happy knowing she does. I am so cheering you and Risa on!

  7. I wrote a post awhile ago about the awful stress of being a parent of special needs kids, not due to our children’s actual challenges, but due to letting go of our own perceptions of what we think is important and letting ourselves have the freedom to live in our own space without the constant judgment that others (even in the special needs community) dole out on a constant basis. There are people out there that aren’t cut out to be special needs parents and perhaps parents at all, and they can’t accept their situation as it is, with their wonderful children as they are. That’s not a reflection of us, but of them. Their judgment says more about the kind of people THEY are, rather than the character of the people they are judging. Anymore, I look at words of hate and negativity from those parents and know that it’s about them and not me.

  8. That blow to the solar plexus used to happen all the time when the majority of parents I tried to interact with would sanctimoniously declare that they loved their child but hated their autism as if they were actually separable entities. Or if my having tried very hard to give them a useful perspective because something seemed very similar to my own experience I was entirely blown off as being nothing like their child since I could after all express myself etc…

    I went to an autism conference once in Toronto. Over and over I was dismissed as aspie and thus having nothing useful to contribute when in fact I was pretty classical in my early days. You needed to be to get diagnosed then. Not that it would matter if I were. There’s enough similarity on the spectrum in any case.

    I think I mentioned before nearly being banned from a list by objecting to the notion you seem to see on a lot of fridge’s that was expressed by a poster that the autism would be gone in the afterlife. Apparently it isn’t okay for me as a person who actually has it to say that my autism isn’t something that has to be removed to fill whatever whacked notion of an afterlife those people have. (I didn’t put it that way) To accept, no matter how hard it gets that I must be as G-d intended me to be and to know that it would be in cruel indeed for me to be someone entirely different after death.

    I can’t stop worrying about the children of parents like that though. I know how even in an era when past a certain point autism simply wasn’t mentioned how easy it was to pick up a totally toxic load of shame and guilt about it. What if your parents never accept you or seem to love you as you are but are always in love with this vision of something it is impossible for you to ever be? What if on top of that you can’t even express how much that hurts? Those tend to be the same parents who won’t take the advice not to say things in front of their kids thinking they won’t understand so I am haunted by the probably thousands of kids (some of whom are grown now) who’s parents I know held onto that attitude for decades.

    You can accept autism’s realities and still be in favour of appropriate treatments. It’s not an all or nothing issue. Accepting however makes it likely that the person with autism being parented will come much closer, I think, to being the person they can be as they are freed from that burden and impossible task of trying and trying to please the parent figure in ways they never can.

    I spent my entire childhood and much of my 20s thinking there was something I could improve or change if only I worked hard enough to be worth loving. It wasn’t as I had overheard in my young days that I couldn’t love it was just the complete denouncement of who I was and my subsequent struggles to be otherwise didn’t really leave much room for any growth on an emotional level. I don’t want that for kids lucky enough to be born in the internet age but you can’t force people to listen either or see how they are damaging their kids when the biggest most vocal “autism” groups out there only support eradication and cure.

    • Gareeth – I really understand that feeling of trying to improve and change and work hard in order to please someone else. Even if pleasing that other person seemed like a moving target. “Accepting however makes it likely that the person with autism being parented will come much closer, I think, to being the person they can be..” I just loved this.

  9. Your husband is brilliant. In fact, you both are. We all have choices to make when we understand that autism is a part of our lives. I may not agree with the choices that others make, but I respect them for making a choice. My hands are too full trying to chart a course for my kids to be concerned about whether or not someone has made the same choices I have.

  10. My mom fought the hell out of me to make me look more normal – emphasis on appearance. As long as I performed correctly, then it was clear she had ‘fixed’ me and all was well. She didn’t really care how much I hated myself behind closed doors, or the suicidal periods when it seemed as though my mom and my psychiatrist were going to “fight” my core being till I was a marionette with no sense of personal worth.
    Twenty-nine years later, Autism still here. Mom, on the other hand, is no longer allowed in my life.
    Fight who your child is all you want but you won’t get the results you’re looking for.

    Appropriate treatment doesn’t demean or ignore the core needs of an Autistic person. I’m getting that treatment now, a little later than I’d like, but it’s finally happening. To say that you have to “fight” the Autism as part of treatment is really useless.

    • Thinking on it further, mom tended to ‘fight’ my hearing loss the same way. As long as I spoke perfectly we could pretend that I actually am perfect. Years in speech therapy and amazingly, I still sound like a hard-of-hearing person… because I am. And I’ve learned not to be ashamed of my hearing loss… though to this day I hate hearing a recording of my voice.

    • Ren, thanks so much for sharing this. Your mom is missing out on so much, but mostly she is missing out on knowing a strong, articulate, wise, kind, woman whom she should be celebrating and so proud of.

      • My best friend since high school has this really amazing mom, and one day she said to me, “She loves you the best way she knows how.”
        If you want to talk about wise, that right there is it. It doesn’t excuse anything but it’s how I am able to process her behavior. I also personally believe that she has a personality disorder and may be incapable of behaving any other way. Still excuses nothing but at least gives a context in which I can remove some of the self-blame.

  11. Every time I need a little perspective, to step away from my job and see things differently, I always find that I am reading your blog. Thanks for always being so honest and providing a different perspective. On a different note, I am so touched Emma remembered me! She is really becoming quite the superstar, all dressed up and ready to take the stage! It would be great to catch up whenever I am stateside again!

    xpeling

    • Peling – I don’t believe in the stars aligning to produce certain events, but I must tell you, if I did, I would point to your reaching out today as the reason why.
      Emma has been talking about you for days on end. “Go see Pe. Go see Pe, splash in the fountain and go ride the big carousel? Pe come visit? Come on! Let’s go see Pe! Pe go with you to Central Park?” These are all things Emma has said in the last three days, I kid you not! And finally, yesterday I promised Em I would try to find you and now here you are! It is really kind of incredible. So…. is it okay to email you privately? I would love to be in touch and maybe Em would like to write you too.
      Thank you so much for reaching out!!

  12. I’m sorry you were so blindsided and hurt by a rude, bullying comment.

    The longer quote you included makes me think that this parent is equating acceptance with defeat. If so, I feel sad for her and even more so for her child. I was raised with a strong sense of not being what my parents expected/hoped for/whatever and it’s incredibly damaging for a child. Parental acceptance–that unconditional celebration of everything your child is–is an invaluable gift for a child. I would take it over any other if I had the option.

    • “Parental acceptance–that unconditional celebration of everything your child is–is an invaluable gift for a child.” That’s it. Right there. That.
      Thanks so much for leaving this here for me. It’s perfect.

  13. So…..this is why i for the most part stay under the radar, as I call it. And this is why I have been so drawn to your blog, not to mention the coincidences of names our children have!!!!! 18 years ago when Emma was diagnosed people were just beginning to hear the word autism. There was no DAN, discreet trial training was the term, and people were just hearing about gluten/casein free diets, let alone all that is available now. BUT>>>how much and how often and which therapist our child went to was thrown out by each of us at our “support group meetings” like little rocks.
    In my experience, autism ultimately is about communication. When I can’t communicate, in any form, with my precious daughter, I feel helpless and alone from her.
    That, my friend, is the birth of a bully……
    Years ago I left the autism world of support groups. I also have an older daughter and many of my issues were never addressed. I don’t think my way was the best, but I did avoid some of the rocks.
    Now, on my 53rd birthday, in the 2nd year of Emma finding her voice, I am blessed to learn what SHE wants to improve about herself, and what is just plain ok for now. I would say we did find our cure…..Emma!!!!!!!!!

    • Happy Birthday Paige! I so loved reading Emma’s birthday ‘letter’ to you. It was just beautiful! We are almost the same age (you have ten and a half months on me) AND we both have a Nic and an Emma! AND we are so lucky!

  14. Sending you strength ♥ and hope for humanity.

  15. thank you so much for having the courage to love your child for what is wonderful in her, rather than wanting to make her into just another socially acceptable piece that does fit neatly into the puzzle.

    • Thanks so much Selene. I have to remember that these are the same parents who have their hearts set on their NT kids going to Harvard law school and then are devastated when they decide to join Green peace or travel around the world on a fishing boat. (Both of which sound far more interesting to me!)

      • Sadly, those who try so hard to get their kids to fit the mold often only end up damaging the parts they want to trim off, leaving the children as mangled adults who might have been whole in their own ways. Again, thank you for keeping up the good fight.

  16. Chou Chou Scantlin

    Yes, fabulous, indeed.

  17. Chou Chou Scantlin

    My comment was in response to Ibby’s. You are brave enough to step up to the plate. if you are not offending someone, then you are just neutral. Don’t be hurt, bright Ariane. You must be true to what you know is true for you, and much good will come from that. As you learn to accept Emma as Emma, without comparison, you must do the same for yourself. You are no other parent. Hopefully, one day, all sides of the autistic community will reach a level of understanding. It will only happen because of the brave people not afraid to speak up. Sometimes the opposition hurts. I am sad you were in the line of fire this time, but I am unendingly grateful and proud that you have put yourself harm’s way for so many!!!! 💔

  18. I have been a member of an online parents group from the early intervention service my son attended last year. I met some wonderful like minded and inspiring parents in the ‘real life’ parents room last year, but online the group has been taken hostage by someone who has a similar view to the bully you talk about. I’ve left the group now because of this but it’s interesting how people like that can really dominate a space (just as a bully does), ramming their views onto everyone else, assuming everyone feels/thinks the same way as them, wanting to prove themselves as the most vigilant (vigilante?) parent. I hate it, but was not willing to take that fight on – got enough on my plate. Such a common issue though!

  19. Of course Richard is brilliant… he married you. Need I say anymore?!?
    Love ya girl!

  20. Yeah, words like that hit me about like you describe as well. Because while she thinks she’s fighting autism, the person feeling it is probably her child.

    (I fought autism, too, until I figured out that I was only tearing myself apart.)

  21. Oh, Ariane, you describe the shock of reading something terrible that so perfectly, your head spinning.. I felt like I was feeling it with you. I’m so sorry you had to read that. You are incredible! When someone writes something like that it says much more about them and their vulnerabilities than anything else. Why would anyone want to write something like that?It really isn’t about you/their misperceptions about you or your parenting it is about their own feelings of inadequacy.

    xo,
    Lauri

  22. Ren as far as the comment about your mom loving you the best she knows how that’s probably right. I spent about a decade or so where I had not contact with my parents because their issues went far beyond just not dealing well with my autism. Ultimately having thought things through and with growing maturity on my own part I decided to include them in a more limited way in my life. The sad truth of the matter is that it has taken my mother almost to now to work out how to be my mother. Soon she will die. She still firmly rejects the A word but accepts pretty much everything that means to me. The past few years she has gone to greater length to build my usual routine into my visits to their house. All the things that blew my mind when my foster mother inquired about them (what I liked to eat, when I liked to do things and so on) when I was young suddenly my mother cares about now. In some ways I wish she had made no progress as a mother as then when she dies it wouldn’t matter so much.

    I am grateful though to have made some peace with it before it was too late.

  23. It doesn’t seem like it’s taken you so long. You except your daughter and help your daughter at the same time. It’s not nice when any mom bullies another mom. When it comes to ASD we as moms should all know the feelings of hope pride and love that we all have for our kids. There is the ugly feelings too. The ones of doubt, fatigue, and fear. It’s the ugly feelings we often hide or shove to the back of our hearts and minds. Trying to hide those feelings just so we can function for our families. It’s not nice when another mom who should know this uses it, like a sucker punch, to hurt another mom. We know where the hard feeling stay. Even if we can keep them in check most of the time. So why turn them on each other. Is this to gain superiority. Well she gained nothing. I feel a bit hurt when I hear ” cured” because if I didn’t have two boys with ASD I could have did the victory dance. When he was diagnosed, I met moms in classes. Our kids all different, our choices all different. But we had non verbal kids all of us. My child moved through the stages faster then their children did. Was I to believe I was better at the work. Did I adapt my household better? No. Some openly told me they were hurt that mine was learning to say sounds and then words faster. I was proud that my son learned but also grateful. But I could see worry in their eyes. I could not do the victory dance. Why? Cause I knew that no matter what he learns or how close to Nerotypical he gets he’s not cured. That this was him learning growing and becoming the grown person. Then came my second reason I can not do the victory dance. My second son. If I have the cure then why withhold it from my second son. If I’m such a good learner and I can adapt my home just so and do the therapy just so, then why can’t I do it for him? Because it was never a cure. It was just my eldest growing and every person is different. I was always being attacked by people with their point of view before but when I couldn’t get my youngest to do it all. I got a lot of ” she’s doing it wrong” and ” if I was her” the put downs got ugly. It was a hard hit to not have the cake walk through ASD. I still work to help him gain basic skills. As he got older I understood the fear that I often saw in other mothers eyes. I also watched other mothers do the victory dance. I feel resentful when I see a mom not only doing the victory dance but showboating with it like she’s in the end zone at the Super Bowl. Mostly cause I sat more quiet with my victories. My eldest now has very little needs as he grows. I have a hard time getting anything to help him cause his needs are no longer as bad as others. My youngest struggles to learn but is learning growing thriving. It’s also hard to get him services. Cause he’s got more needs and is now older. Now I have to say even if he was to learn it all. I can’t see my self doing victory laps. Cause their is no cure it’s just learning and growing. Who ever that lady is. It’s not that one mom excepts Autism that’s the problem. It’s that you don’t except Autism. Because you didn’t cure your child he’s just grown. He’s just him and he still got ASD in him. He’s just learned what he needs to do. Now be proud dear woman but don’t be a cruel women and do victory laps. Be graceful with your tryumph of getting your child to learn.

  24. AwooooOOoooooooo 🐺. I am reminded of an old Beatles song: “all we are saying / is give autism a chance”. What? That wasn’t a song, and the rhythm is off???

  25. I read this post yesterday and it stuck with me. Some people are deranged and there is no way to reach them with logic or common sense. A person who talks about “fighting” autism is mentally ill. Like someone caught in a rain storm with no shelter, thinking they can stay dry if they fight the rain, take a war-like and hostile stance toward something they have no control over, something they don’t even need to control, something that can’t even hurt them, deluding themselves into thinking they have powers that no human being has. It is a horribly unhealthy form of grandiosity and delusional thinking that will cause a person to drift so far from reality they will eventually lose their mind because of it.

    I’m not a parent, and I don’t understand why parents get so caught up in all that stuff and boast about their parenting style and take credit for things like “defeating autism”. They compete like child rearing is a spectator sport or something, and their child is the ball that they punt through the goalposts to win the game with all the pomp and glory of a parent destined to make the Hall of Fame. Don’t they realize they are just kicking their kids around an imaginary playing field, just so they can show off to other parents and brag about it in the locker room? They aren’t defeating autism, they are only defeating their kids.

    • I pretty much want to highlight every single sentence here. And then you wrote – “They aren’t defeating autism, they are only defeating their kids.” Yes. That’s it. That’s completely it. Right there.
      I love reading your comments. Thanks for sharing this with me.

    • I guess AspieKid can say it better than I can. But I agree with you. I just wish we could take the word cure out of our vocab. I swear I do. I wish people would truely see that ASD kids grow up. That not everyone who has Autism is diagnosed. That adults thrive and live every day. That no not everyone on the spectrum has a wild IQ but they live and learn/grow. That we are all people and have worth. That motherhood and all the decisions that come our way is hard enough without the mind games and head trips other mothers play. This month is Autism awareness month in Canada loving someone with Autism for who they are should not be so hard. I wish the autism community showed more support for each other instead of hurting one another. That’s all I wanted to say here but just like the kids I love my communication often comes out wrong anyway.

  26. Lol auto correct changed aspiekid to aspirin. Funny I miss spell a thousand words a day I sware but when I spell it right it corrects that. why not correct all the crap I don’t spell right eh

  27. 1funmum – I think you’ve said it beautifully BOTH times. Last night I tried to leave you a comment saying thank you for reaching out and leaving such a lovely comment and then for some reason my iPad kept going out on me and then I fell asleep and forgot to rewrite it and resubmit it. I’m SO sorry. I loved what you had to say and thought the whole idea of the victory dance was so right!

  28. http://video.news8000.com/watch.php?id=36335
    Ariane….this probably won’t link so you may need to try and retype it in to your browers….hope that makes sense! :O) I am so computer savvy! NOT! Or maybe you can find it on their website. It is a story that the news anchor did on an email she received saying that she was too obese to be on the news. She really had a great response and it just reminded me of this person getting attacked on her blog as well! Great piece and I am sorry you had to be subjected to that pain as well! Big hugs!! :O)

    • That link came through perfectly. Just watched! Good for her. It’s interesting how everyone keeps talking about bullies in schools as though we aren’t living in a culture of grown up bullies. Honestly, where do people think children are getting this from? I find it amazing. It’s as though people don’t see it. It’s everywhere! Look at politicians, talk show hosts, religious leaders, we live in a society where bullying is so commonplace we can’t even see that we’re surrounded by it on a daily basis.

  29. Ariane!!! ((((Hugs))))

    I want you to know that today H did a presentation “Dear Teacher” to my school staff (also his school) and then we did a screening of the documentary Vectors of Autism. My boy is 13, and today he taught teachers at his school about the way he experiences the world!! ( And, yes, if you are wondering, I am a pretty proud mom tonight.)

    There are fabulous things happening with blogs like yours, and the work we are doing in supporting and promoting the voices of self-advocates. We need to be listening to autism and you are doing so much to promote that.

    One of my favourite lines from H’s presentation is “I need you to notice the little things I do right – instead of the little things I do wrong…” I am looking for ways to support my child in his journey of self-understanding, self-acceptance, and self-advocacy. I know that you are on the same path with Emma. Our wonderful children need to be fulfilled in being exactly who they are, and we need to support them in gaining the skills and resiliency and self-worth as they make their way.

    A huge part of that is accepting my child this very moment – for who he is this very day, because otherwise I reinforce the negative message, that he unfortunately hears, that autism is an epidemic and a tragedy and that there is something wrong him that needs to be ‘fixed’.

    Thank you so much for the work you are doing – and your willingness to share yourself and your journey with Emma! You are a hero of mine!

    Leah

    • I just love that H. made such a presentation! So, so wonderful!! And yes, you should be proud, I’m proud! ““I need you to notice the little things I do right – instead of the little things I do wrong…” That’s something ALL of us wish people would do, and such a great reminder of the criticism first culture we live in.
      Sending you love, Leah and thank you for such a wonderful comment!

  30. *smirk*- missed a word…. second to last paragraph “something wrong WITH”

  31. Pingback: Parental Bullying and Autism « Raising kids with diagnosed/undiagnosed autism

    • A Father Lost – I just went to your blog and want to reach out to you and say hello. I don’t know if you clicked on the little box so that you’ll get follow-up comments, maybe you didn’t and so won’t see this, but if you did – Hi!
      What you are going through, (maybe you are somewhere else with all of this now) but from what I read, where you were in the beginning of October, is a place I know well. Those mornings when I would wake up and for those first 3 seconds would forget that things weren’t as I had once thought. As I read your blog, I tried to remember what I would have wanted someone to say to me during those first few weeks and months. Mostly I wanted to be assured it would be okay. I wanted to know, to see in a crystal ball my child’s future and to be convinced that none of my fears would come true. And I wanted to know that the early interventions would help her and do all that everyone said they would. But mostly I wanted to know, to really know that my fears wouldn’t become reality.
      Now eight years later, I still want to know beyond a shadow of a doubt that my beautiful child will be okay. And she is. She’s more than okay. She’s great. But great in a way that I don’t know I would have recognized as great 8 years ago.
      And I guess that’s what I want to say to you – Things will change. You will change. Your child will change. And while all that change is occurring, find others who can help you. Get support, talk to others. My husband had to start a support group, there just weren’t any other men whom he could talk to, who were willing to listen, who were able to be there for him.
      Don’t try to do this on your own.
      And if you ever need or want to reach out again, I’m here. 🙂

  32. How can we, autistic advocates, help you when you are dealing with this kind of bullying? We talk alot about being bullied ourselves. I never really thought of parents being bullied by other parents. Since I am not a parent that never really occurred to me.

    hugs

    Andrea

    • (((Andrea))) What a kind, thoughtful and loving comment. Thank you.

      I spent years trying to find all of you (Autistic people). Years. And then I found you. First one, then two and then suddenly I was having conversations every day with a number of people, many of whom became my friends, some are very, very close friends, people I think of as family and now… now I cannot imagine my life any different.

      When I come face to face with this kind of behavior (that I wrote about in this post) I write about it and I feel better for having done so. Almost always the people who get it, who really understand are my autistic friends. So I talk about it and I listen to other’s experiences and I feel better.

      I don’t have a direct answer other than to say, you just did help me, with this comment, by reaching out to me and I appreciate it so much. So thank you. Thank you so much. (((Andrea)))

  33. I love this! I agree with what Richard said. It is so important to be comfortable in your own skin and know who you are inside. I believe this is the key to being truly happy.
    Thanks for sharing.

  34. I LOVE THIS POST!!!! I wrote something similar to this explaining why I don’t read a certain author’s books. I don’t believe that polarizing a group of people who are having similar difficulties is the answer. We should all be accepted and acknowledged for our challenges… appreciate each other’s paths.
    Thank you so much for this post!

  35. I agree! And 1 of my sayings is “once you met 1 person with autism, you’ve met 1 person” No two people are totally alike whether they have autism or not. I have 2 wonderful girls who happen to have autism and it’s my job to love and teach them. I personally feel that the “people” who say there is a “cure” for autism have not accepted autism. I just ignore the bullies and look for people like you.

  36. Just wanted to take a minute to tell you that I love everything you post. Thank you.

  37. In a world whose primary focus is upon the getting and keeping of Power, “right” is that which causes ones’ power to increase, and “wrong” is that which does otherwise.
    To produce a “defective” child is the Acme of wrongness. Such parents must regain their lost Power by any and all means – and lying, attacks, and all other means are sanctified by the pursuit of Power.
    To deny such an instinctual drive – for power is life in the world of instinct -is as wrong as not having the correct quantity and quality of instinct oneself. It is the essence of treason. This is why you were attacked, and Are hated.

  38. god bless her I wish her a great life she is very beautiful and its good that youre teaching her to be herself!

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