Light it up blue, don’t light it up blue…heed the message even if you have to kill the messanger..

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I have struggled with writing this post (as I tend to do with anything that can be perceived as a controversial topic) for a few days now and this is because I have grown into a person that does not thrive in controversy any longer. I have my opinions and at times, feel the need to share them, but when asked to defend them as I often do (as they are rarely on the side of popular opinion), I crumble. I was once a person that debated my way to a national level and now when pressed for my reasoning I tend to find myself just backing down. I do not want to fight or stand firm as I once did in my youth since as an adult I find that people feel passionate about what they believe, every iota as much as I do, and who am I to fight that? Who am I to be someone that tells them that what they feel is something to be debated at all?

Though with all of the up and down and the controversy surrounding the “Light it Up Blue” campaign portrayed by a widely known Autism awareness organization, Autism Speaks, I feel that old itch to put my two cents in. It could come back to bite me, of this I am certain as my opinions often do, but I think it needs to be said.

I am going to begin with a personal story and perhaps, even if one does not agree with my ideals, you may see where they stem from and that will breed understanding. As wildly ironic as this will sound for those of you that do not know this about me, I worked with children with Autism for years growing up. At the age of 12 my mother decided that, to keep me out of inevitable trouble and teenage mayhem that occurs over the summer with too much precious free time on your hands, that I was going to volunteer in my community. She let me pick any program that I chose and it was my decision to work for the youth Autism program. I had no idea what it truly was at the time but I loved working with children and thought it would be a good fit.

Within a few weeks, I learned what Autism was. How it functioned and I saw glaring and horrible errors with the training and education of the teachers. Everything involved in the training was all about acclimate, acclimate, acclimate. Make them like us. I was told that one day they had to live in our world so we had to “train them” (yes, you heard me, like puppies) to be like us. Even at such a young age, I knew this was a falsehood. These were children, not dogs, and we didn’t need to train them at all. I never listened. I would sit down everyday and find what made them tick. What they did and didn’t like and why. I never forced them, I never made them, and I always listened even when the child was nonverbal. They don’t have to speak words for you to hear them. They would communicate in extraordinary ways that if you just took the time to figure out the “code” then you could be a part of their world. They wanted to let someone in, they really did. People just didn’t know how, 20 years ago, to listen. it broke my heart to watch teachers force them and hold them down while they tried to “break” them of the sensory issues that terrified them. It shattered my spirit to hear them scream from hunger when they weren’t given foods that they wanted so that they would eat something “different”. That was the way Autistic children were “handled” twenty years ago. Forced acclimation.

I made it my mission to do what I could where I could in the school. I befriended the children and made my way into their worlds. I became known as a whisperer, of sorts (and please know that I say that with no sense of ego whatsoever. I am simply bringing to light the state of affairs back then) and when there was a tantrum that a teacher couldn’t “handle” there I was. I would sit with them and yell with them as well. They trusted me and I trusted them.

Every year for the next 5 years I went back, eventually as a paid part time Aide. I still am in contact with many of the parents of the children that I worked with today. These were great kids, beautiful and proud and full of life. They didn’t need to be trained or broken, they needed to be understood and guided. And over the years, I saw the training in the teachers evolve, as well. The more the light was shined on the concept of Autism, the more research and development of new techniques there were. It changed the game in such a huge and wonderful way and I went from being horrified at the way they were treated to being proud of the advancements and grateful that I felt like a tiny part of it even for just a few years.

Does there need to be Autism awareness?

Yes! There truly does. People need to know that this is not a disease. This is a way of life, a manner of thinking, this is the very core of who some people are. The rest of the world needs to know that and they need to be aware of the wonderful people that have Autism and how they can and do benefit our society.

But, and this is a big but…

Autism Speaks is not that organization. Buying that blue ribbon or light bulb is funding the treatment of autism. I know that to those who don’t know anyone with or are a part of someone’s life that has autism, this seems like a wonderful plan. Treatments are for diseases. This is not, I repeat, not a disease. This is being different. Autism Speaks uses language to describe Autism that take me back to what I call the “dark ages” of the disorder (from several decades ago) like “crisis”, “disaster”, “hopeless”, and “epidemic”. None of these things are what I consider to be a healthy voice for people with Autism. How can I stand behind that when it is the epitome of what caused forced acclimation in the first place? This organization, in my humble opinion, is a monumental step backwards in Autism awareness.

Does there need to be Autism awareness?

Yes. I just don’t think this organization is going about it correctly. The funding needs to go to new methods of teaching, equipment to facilitate communication in nonverbal children, research into the sensory issues and making household items easier for them to handle. Not treating it as though it was a disease. I know, Lord I know, how difficult raising a child with Autism is. I watched parents in denial and fear and self hatred for years going through it. It is something that even parents like myself with atypical children will never, ever understand. Though I don’t believe that the children should be asked to suffer because it is hard on us. I think giving our money to an organization that wants to change our children is abhorrent. If you want to raise awareness for Autism, I applaud you, I do with every fiber of my being. But please, look into the place where that money is going. If you truly heed the message of raising awareness for people with Autism then don’t give your money to the people that want to eradicate Autism.

Heed the message…but for goodness sakes, kill the messenger.

Photo credit:http://blog.autismspeaks.org/category/light-it-up-blue/page/2/

Childhood Development Musings Parenting Parenting and Childhood Development

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Amber Perea View All →

I'm just living minute to minute, hour to hour, day to day.

30 Comments Leave a comment

  1. Great blog, I agree with a LOT of what You said. I’ve been volunteering for a National Autism Charity that takes $0 salaries and a weekly FREE Radio Family support network at: http://AutismRadio.org

    most charities give 1-10% of the funds directly to fund their programs, but the rest are governmental funds for salaries to raise more funds. Autism Radio just developed a National Swim team for Autism with Special Olympics, a Great Horseback riding program, Rock Climbing and much more. Don’t give up HOPE, there are still people and organizations out there just “helping others”. Check out their weekly show at: http://AutismRadio.or

    • That’s my girl! She clued me into sensory issues and utensils (she has issues with them) and when I learned that I began giving Jp finger foods that were different but hand held and he’s tried three new things. Love her! 🙂

  2. So, I completely get where you are coming from – I’ve heard it voiced by many. I’m actually the chair for our local Autism Speaks walk – but before you cringe, let me tell you WHY. That day, that one day – I get to see all of these beautiful, incredible children feel SPECIAL. It makes me sad and angry that they don’t ALWAYS feel that way – but (as far as my own experience goes), they don’t. So on walk day they get to go out in public and be celebrated for being different – not shunned, laughed at, or threatened (because yeah, I’ve had complete strangers threaten to give my child a good “ass whoopin” while he was having a meltdown).
    I’ve had my doubts with AS. I’ve had my moments where I’ve questioned everything about the organization – and what I found was people on the board, “big wigs” who weren’t just willing to answer my questions – but welcomed them.
    I had the opportunity last year to partake in a leadership conference they offered for all of the staff and local volunteer leaders. Again, what I found was a group of people with common goals. They want to find the why; they want to help make things better for the child; they want to raise awareness and community support. At it’s core it is an incredible organization. Do I believe they are infallible? No, of course not. I’m not that naive. Do I still have some issues here and there – of course I do.
    I’m in the process of starting my own local organization – designed to pick up the slack where others fail. Providing funds and resources to local families and service providers. I’m sure plenty of people will not always agree with me, but I do have hope that those people will be intelligent, well thought people like you – who have valid reasons for discussion.
    That being said, I’ll always show my support – I’ll light up blue, not because of the organization that started it – but because of the message behind it (and we buy florescent blue bulbs, not the AS ones – but that’s Daddy being OCD). I won’t always be walk chair – but I’ll still go to the walks. Because of the message behind it. Because of what it means to see all the smiles on the faces that are normally so hard to find.

    • I am 100% for anything that brings joy and happiness to these kids lives. Period. There are things that I (obviously) do not care for from a solely personal stand point concerning the appropriation of funds when it comes to this organization but I applaud you for taking part and putting yourself in a position to raise awareness. No argument from me here on your standpoint. It’s valid, well thought out and commendable.

      You get up, get out, and do. That is worth a standing ovation, not argument. You live it and love it and if there was ever a person I would bow down to when it comes to their opinion on the subject, it is you, my dear. 😉

  3. I know nothing about this organization, except that it exists. But, I have some thoughts from someone that does NOT know a lot about it. Yes, I majored in Psychology in college, but we just barely brushed the topic of Autism. I know a tiny fraction about the autism spectrum. But, I do have a question that I am left with after reading this….If you don’t think it is a disease, just a way of being different, then do you not think there could ever be a cure? This is an honest, sincere question. Maybe that’s not what this organization is trying to do either. But, I’m just left with a lot of questions after reading this….And, I’m not sure what my questions ARE. But, I have to think about this. Great post!

    • Curing it, or attempting to cure it, tells millions of people that are autistic that it is not okay to BE autistic. Think if it was your child and the biggest organization out there was using the language that they did. It would kill me for the people that are educating the world about my child were making it seem as though there was something wrong with him just the way that he was. It puts them back so far from where we were going. Which was more a road of acceptance and discovering technologies to facilitate better communication.

      Even the most nonverbal children of autism grow up to be adults and this organization is a gigantic slap in the face to them, in my humble opinion.

      A cure? Maybe? I don’t know on the grand scheme, but the fact that the biggest organization that are supposed to be the advocates for the Autistic people that are here NOW (not the unborn in the future) and living amongst us almost seems to DISLIKE (read many of the mission statements and advocacy memorandum) who they are and wants to change them just freaks me out, I guess.

  4. I have such a hard time wrapping my mind around this one. It’s hard to know how to look at autism because when I see it, it is the child tantruming in gymnastics class, it’s the beautiful blue-eyed girl flapping and twirling in the middle of youth group when she is supposed to be working on a craft with the other kids, it’s the 21-year-old who visits my home but will only eat macaroni and cheese and nothing else because of her food aversions that were always accommodated.

    I am actually a big proponent of child training. What is training? Teaching. Training is teaching our children how to behave. I think they need to be taught how to behave whether they have autism, Down syndrome, whatever. If we just accomodate, accomodate, accomodate, they will never learn how to master their behavior, don’t you think? What you describe you saw as a volunteer and aide sounds horrible, but perhaps there is a balance somewhere. I think if you can teach a child to, say, not twirl or rock, and to control their bodies, aren’t you equipping them to be fully integrated, versus saying, Oh, that’s just the autism, it’s just the way they are. If they are twirling and rocking uncontrollably as adults, they would probably have a difficult time in social settings and employment situations. (Yes, I know that’s a little stereotypical and cliche, but I have witnessed it quite a bit in children, and it’s just an example of what I’m talking about.)

    So what does balance look like? Accepting that different is okay, yet still acknowledging that autism presents with some pretty challenging behavior that needs to be fully understood and addressed compassionately, but addressed all the same. I guess that’s the way I see it. If typical behavior modification isn’t working, I think people should research and work on discovering ways to get through to these kids in a loving manner.

    It probably sounds a lot simpler than it really is; I don’t have a child diagnosed with autism, There, I said it first – so hopefully I won’t get flamed along those lines. 😦

    I admire you for blogging about this. I hate conflict, I just want everybody to make nice, but these subjects really do need to be addressed. I think when we talk about these things, it lets people know, hey, I’m not the only one who is questioning this.

    Blessings.
    (Don’t be mad at me, pleeeeeeeeease)

    • I would never hate you for having an opinion that is different than me! What kind of nutball do you think I am?! Lol

      It’s hard for me to explain other than seeing the children grow into adults. Autism IS who they are. Most don’t flap (outwardly) forever though the sensory issues are something that is never outgrown. And I have to admit, I try to work with Jp where I can, but I let him have his aversions. It’s not his fault. It goes deeply beyond (far, far, far beyond) when we as neurotypical people “don’t like something”. Think of a food you hate, noise you don’t like (nails on a chalkboard, ect) and multiply that times ten. It’s a very real thing. I respect that.

      I can’t really defend my position any more than I have seen children grow into adults with Autism and the ones that I have seen flourish were the ones that were accepted and advocated for. One child in particular that I still have contact with was considered “classic nonverbal”. His mom was the best. He had ticks, and sensory issues, and everything else in the middle. Now he works as a mechanic. His parents were the most lovely and tolerant people that I have ever known. So I know that love works.

      Oh, I don’t know….I’m babbling. I told you I’m not as good at defending myself anymore… 😉

      • That’s the beauty of getting to 30 – you start realizing you don’t have to defend yourself any more. 🙂

        But you make some really good points. If children have issues that hinder their social skills and they never outgrow them, perhaps there are jobs out there that are perfectly suited for them. Tough issue. And really, all of us parents are trying to find the balance between just letting our kids be who they are and trying to train them out of anti-social behavior – it’s just the balance lands in a different place perhaps for kids with autism. Sigh.

        Now I’m off to chase down the kid whose razor blades I found in the bottom of the washing machine. They weren’t kidding when they said you’ll find the darndest things in your kids’ pockets when you do the wash.

        At least the fire is out. (I’m still debating whether I’m going to post on that one or not.)

        Blessings.

    • I think that is my main concern. Instead of focusing on making Autism into something that can be changed or forcing our children to be what they are not, we should find where they do fit in and guide them there.

      The little boy that I knew was OBSESSED with cars. So as he grew older, his parents advocated and worked hard to get him into a program that would work with him on being a mechanic. They worked WITH his obsessive interests and now he does what he loves. Isn’t that what we all do, really?

      And yes, please post. Keep it real, Allyson. 🙂

  5. Good for you for posting something that was obviously going to be controversial. I read your post and thought, hmmm, that make a lost of sense! Then I went to their website and read some other posts and thought well, this is going to raise a bunch of money…so I don’t know!

    If it’s not a disease then what is it? I truly want to know because I have a special friend who has autism and I don’t know what her future will be like.

    • You have to dig on there website to truly see the appropriation of funds. That is my number one issue. Where they put that well meaning money is what infuriates me to the point that I see red. If it went to make the lives of people of autism better I would buy every bauble they were slinging and those that know me, know that.

      Where is goes is a place that I don’t think is place that is bettering or making the world a more advanced or comfortable place for people that are autistic so…I’m standing my place on this one. But that’s just me and I respect the people that want to lend credence to the cause, it’s a step in the right direction and it almost makes me want to kick that organization more. They are almost false towards the public and that makes it worse for me.

      All of that brew ha ha aside, thank you for saying that I did the right thing by posting. I wrestled with it for awhile. I am a Mommy blogger…that is who I am here, but I am a Mommy blogger with a mind and I thought sometimes I should share that facet, too, on top of the potty training debacles. 😉

      • The girl who is my autistic buddy’s mom is on a cruise so I can’t get her take. I trust that she would agree with you as you’re both similar sounding people. I blogged a “serious” post the other day and it’s my most viewed post by far. By way far!! In two days!! I’m thinking I need to change my blog into a sad bastard thing. Even with Mr. Potato head in the header that happened, lol! But for real, I get what you’re saying. I see pics of your son and I think he’s just fine as he is. Same with my little friend! She’s 13 and very much a unique kiddo! I do worry about what her future will be like though. She’s built like a 21 year old woman so I worry that when she gets to high school that boys will be all over her. How will she react? I truly don’t know! It’s not my place either, but I love her, so I can worry!

    • Lol mine has been one of the least liked and viewed. Which to me means little or nothing but when you said it, I checked. 😉 People either thrive in or hate controversy and my community is Mommy bloggers, with a ton being parents of Autism and support Autism Speaks. I knew it wouldn’t be well received but what’s the point of having a voice if you don’t use it, right?

      As for your budding adolescent, that’s a tough situation. It needs to be a very open line of communication with the parents, that’s for sure. There is one blogger that was autistic (adult) that I followed (no longer blogging) that told some horror stories. Very open communication is the best bet. Her parents (the blogger) tried to force acclimate so they weren’t on her side really. Your girl’s mom (if she is anything like me as you said) wouldn’t be the same parent, I’m certain.

      And yes, that is my whole point. Being a parent means that you love your child. You want them to be accepted. Always. Everything is harder on the parents of autism and I understand that fully but I think that saying that it isn’t okay to be Autistic or that is something to be cured sends the wrong message to the public that isn’t aware of Autism fully. That is the largest and most well known organization in the country and that is what they advocate. It breaks my heart. How do you think it makes people that are Autistic feel? It’s so wrong on so many levels. Okay, I just caught myself rambling again so I am going to shut up. 😉

  6. I have been thinking about this a lot since you posted it. Congrats! 😉 You are making me think. In fact, in a serendipitous moment yesterday, I was visiting with a woman that I had just met that works with autistic children. I was with other people, so I couldn’t really delve into this topic with her, but I was really thinking about it! But she was a person I had just met. Anyway, she kept talking about how much she loved autistic kids, and how fun, and cool they are. It was really neat to hear her perspective. It got me thinking about a friend of mine that just lost her daughter with down syndrome. She was only 2 years old. She was a good example of loving her daughter whole-heartedly like all parents do, but I wonder, if you can’t still wish it were different? Maybe that is the purpose of some of these organizations. They are hanging onto the hope that if their child were “normal” their child’s life would be drastically different. I don’t know. Still thinking….

    • I love that I am getting the wheels turning! It’s such a compliment. As for loving your children and wanting them to be different I can say only this…I think that if you don’t love your children for who they are then that will color the way that you parent them and it will affect the relationship as well as the child’s self esteem.

      I will tell you why by telling you a secret. When I was in the 4th grade, I was tested for a prestigious gifted school. After the long and tedious process of analyzation, my parents were told that I possessed an IQ of 160 and was gifted with limitless potential. Needless to say, they were thrilled. I didn’t understand where or how they got that but didn’t care much about it. I never, ever would. But here is what happened…my parents always wanted me to be better. Work harder, do more. Knowing what you do about EQ vs IQ it could safely be deduced (though the testing was still quite primitive back then) that my IQ was quite high but my EQ quite low. I had little to no interest in academic pursuits or that type of socialization. My mom pushed and pushed and pushed. I wanted to do different things than what she wanted for me and it caused a divide in our relationship that didn’t mend until I was in my mid-twenties.

      I grew up feeling unaccepted and alone. Very, very alone. It didn’t matter, whatsoever, what I was capable of. To her, it was EVERYTHING. So I feel that if she took a step back (and she later agreed with me and admitted that she made a mistake) and loved me for ME we wouldn’t have lost all of those years and I probably would’ve made better choices since I wasn’t seeking that acceptance that was lacking at home from outside sources.

      So, personally, no, I do not think that you can truly love and raise your children in a warm environment if you want them to BE someone else (not change a small thing about them but who they ARE). I sat in a room and was told that Jp was probably Autistic. I know what a punch in the gut it is. Even for a Mom that was different growing up, I didn’t want that for him in the beginning. But then I remembered that we don’t choose who our children are, we only love and guide them and I told myself to shake that selfishness off, get up, and raise that beautiful child to love himself. For us, things have changed, but if they hadn’t, I wouldn’t be any different than I am right now.

      Our children will know more than we give them credit for and they will feel disapproval. Living a life of “what if’s” isn’t really living, is it?

  7. I truly don’t know very much about autism, except that it scares the shit our of me. A friend of mine once told me it’s like all the same things about them are there, but they are locked away in a different room of the brain with no directions on how to get there. Is that an accurate description?
    I have had a few students on the spectrum over the years, and I have found that the more accepting I am, the more I treat them like anyone else and ask questions about how to make things easier, the stronger the bond. Of course the music itself seems to have a very therapeutic effect which helps things along.
    I did have one student who I’m SURE had autism, but the parents would never say so. They just yelled at the boy for his “bad” behavior and the lessons were total hell. As soon as I thought I was making a connection, they would intervene and cause it all to go to shit. I can imagine they were frustrated and defeated, and I eventually had to ask them to leave my studio. Not because of the CHILD, but because the parents were kinda psycho. For reals.
    Anyway, with the incidence of autism seemingly on the rise, I think you raise some very timely and appropriate questions. What can we do for these kids to help them integrate while still being sensitive to their needs?
    I have no idea. But as someone who potentially help many children on the spectrum, I am willing to learn.

    • I can answer the “epidemic” question easily but the rest is a little more tricky. It’s “on the rise” because in the last twenty years we have broadened the perimeters considerably. Autism used to only be classic autism, flapping, yelling, almost in a different world at time much like your friend described it. It is intense and teaching is certainly something that is harder. It’s the parents like the ones you are describing that are the biggest advocates for curing Autism and I have met many. It broke my heart to see that parents were so unaware of what would help their child (you have great instincts, by the way, in having the child open up to make teaching more capable, even though it scares you so that’s pretty awesome) and that they believe yelling is the way to help. I follow a few blogs of adults with autism and you can hear what this “method of discipline” accomplishes. Little to nothing.

      Now Autism includes many other variations that were always there but those kids went through the system being called “weird”, “awkward”, or “shy” such as Aspies. They never received services and mostly were just told their behaviors were wrong because they weren’t normal. The perimeters were expanded to help them receive services that they desperately need.

      Integrating them into society is as personalized as it is a “normal child”. Find what they are good at and where their strengths lie. Guide them there. Acceptance is what makes a bond, in my experience, and the children that I know that are now the most successful are the ones that have strong advocates in their corner. Not the ones that parents are trying to make children that are different, like us. I promise, do yourself a favor and go check out some adult autistic blogs and read about their childhoods. Many of the methods that Autism Speaks advocates seen through the eyes of an Autistic will break your heart.

  8. Events sponsered by Voldemort Speaks don’t make autistic people feel special. Perhaps if you can somehow shield them from the tragedy message always going on in the background. The inevitable speeches about the epidemic, the burden, maybe then there would be fun elements but you would still be supporting an agenda of a group who’s number one research priority is not anyting that makes the lives of autistics better but to develop a way to detect us before we are even born. My intensely nerdy ways make me more confident that this cannot be done than they are that it can and must but all the same if taking part in a walk for eugenics is the root to feeling special I will pass.

    As for the notion that autistic people are locked in with everything there but inaccessible that really doesn’t do it either. The world for autistic people is hard to make sense of. It’s a chaotic, incomprehensible mess. Functional medical resonance imaging can now actually demonstrate that many of the information sources the neurologically typical use right from the beginning to make sense of the world are not sources of information for the autistic. The comparison to being an alien comes up in auti-biographys because it’s very much like being on a permanent away mission with other bipedal, sentinent beings, your universal translator is functioning at best intermittingly and there is no way out.

    When the world is random and chaotic retreat is life preserving. There is variation on the extreme to which autistic people experience the things that go with autism and a lot of fluctuation depending on the situation even. For myself any capacity I have made upwards progress with can be lost too too much of anything I can’t cope with. I can speak, I can go out into the world. I can make my position known. Then there are the days when all I can do is stay in my room under my weighted blanket and wait for the capacity to do more to return again. At an extreme I am right back to words being an incomprehensible tangle and I just have to wait.I am not in my own little world when this happens. My inner world is big. I am hiding from chaos and randomness in the external world that just got to be way too much for me.

    The biggest mistake people make about autism I think or one of the biggest is failing to give autistic behaviour any rational meaning which would be completely inconsitent with what we know about behaviour in general. So historically there has been a drive to extinguish what is functional behaviour in the push to make the person look normal, fit in and be a part of a world that is a constant struggle. Stripped of the coping mechanisms that actually work for them and relentlessly forced to engage one could predict retreat as a likely outcome. Enough training and you might predict robot compliance. Both of which I have seen. Of the two I prefer retreat as it leaves open the option of being able to engage with the person as the person they are instead of what relentless conditioning has forced them to become. You leave intact the person while hoping to give them the skills to cope so that on their own best days they can have a life of some quality as the person they are.

    (Sigh I stuggle so hard to make my own blog posts and I can’t stop myself from blog post length comments.)

    • Below comment was not in response to what you said but the one above yours. I seem to have missed this one somehow. Sorry.

      I can’t get past the part of the bipedal beings with an intermittently functioning translator.

      That needs to be a whole post! That is genius! Perfect. I think it is the most wildly simplified but honest and accurate portrayal of what I would imagine Autism to be like I have ever heard. I think that same thought of Jp’s language disorder at times. That parts make sense, others are a blur. You can tell that at times he just doesn’t understand what you are saying so he repeats what you said back to you, knowing that a response is the appropriate action but unsure of how to do so since the question was completely misunderstood.

      You always put things in a way that makes me see the disorder in a whole new and enlightened way. I have a question for you, since you are my go to for understanding (I never try to “strip” Jp of any features that help him cope, he still likes to hold his ears when he feels overwhelmed and I snapped at a family member for trying to move his hands. They are there for a reason) some things that my child does.

      He has just started to grind his teeth. HARD. I can hear it from across the room, hard. It doesn’t seem to coincide with a particular emotion, it’s just this new thing that popped up and I was wondering if you knew anything about it. Thank you for reading! 🙂

      • Well I’ve known more than few who do it not necessarily from stress but as a sensory seeking thing. Hard to tell without seeing when he does it and what he looks like but since teeth grinding that hard can cause damage to the jaw over time it would be worth experimenting with providing other things to chew. (I had a friend who had to resort to boiling the heck out of bones meant for dogs as that wound up working best and oh did people glare) If he isn’t doing it all the time though I would try to keep track of when he does it because whether it’s emotional or sensory seeking you probably do need to divert it to something. (Ice works for some if they can tolerate cold well and would also address hydration if he likes it but in the end you will need to experiment)

      • He does it the most when he’s happy or smiling. Or that is when I notice it, at least. It doesn’t seem to be a stress thing at all. Usually I have at least seen it before but this one baffles me and like you said, it’s terrible for the jaw. He does seem to like ice so I will try that. 🙂 Thank you, as always.

  9. Amber, simply put: Always worth the read here. Thank you for sharing your humble opinions and EXPERIENCE. I think you’re brilliant and share your beliefs in a decent fair mannerism. Thank you for the share. J9;)

  10. My 2 cents is this … I agree with you and I disagree with you. The problem is that the spectrum is too big to have any one opinion be the right one. What you are saying sounds great to someone who isn’t hurting themselves or others everyday. You mention non-verbal autistics, but being non-verbal is not the worst case scenario for someone with autism. If you had a child that you physically could no longer take care of or who was physically hurting your other children and they had to be taken away and moved to a locked facility for their own safety, you may want a cure. I’m not saying I do, but I am saying I understand why others would. Only eating one type of food may be difficult, but it’s not as bad as having a child who eats non-food items, like their own hair and then gets violently sick after. If that was the case for your child, you may want a cure. Some behaviours aren’t just odd, they are harmful and no-one wants their child to be in harms way. I could go on, but I think you get my point.
    Ultimately, I think that the direction taken (cure vs accommodate etc) will vary drastically based on how the autism is represented in each person. Until there are more narrow definitions, there is no one correct way to think, feel or talk about the disorder.

    • I agree, the greater the degree of severity comes with more of a need to solve it. Thank you for sharing your perspective, it’s always nice to hear opposing viewpoints.

      As always, my opinion comes from a personal place, and in no way am I stating that it is a hard and fast truth. Simply a belief. Though the points that you make do make a lot of sense.

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