Today I sat in my dentist’s reception area waiting for my appointment. This time my panic had nothing to do with my fear of all things dentist.
I had just read this blog entry
It is certainly not for the faint of heart. My husband wept after reading it.
This woman articulated so many of my feelings about Evie’s autism–giving them credibility and reason coming from a woman who has autism.
Last year at school, Evie was “flopping” often. Flopping meaning sinking to the floor. Some of her special educators felt like it was a behavior and by allowing it to continue, they would be reinforcing the behavior. I felt like maybe it was a behavior sometimes. Maybe it was a function of her motor planning/neurological disorders. We went back and forth about it.
Me stating that she needs time to process before acting physically. Give her some time, offer your hand, and 9 times out of 10, she will be fine.
Them saying that by not forcing (not the word they used but I can’t remember what it was) compliance we would be reinforcing that flopping is a way to avoid doing something she doesn’t want to do.
Aside from the fact that there is an actual medical reason why she cannot act immediately, I was very uncomfortable.
Finally, I emailed that I did not want Evelyn being physically forced to comply with requests unless she was putting herself or someone else in danger or really disrupting the education of other students.
This set off a shitstorm of emails and meetings. One educator told me that all of the people working with Evie were afraid to touch Evie after my email. But I digress.
I could never really articulate or even sort out in my own mind why it was so important that Evie not be physically forced to do anything.
Now I get it.
I don’t want my child, your child, any child to ever feel that her body is not her own. To know that nobody has the right to force her body to do anything. And I can now see how what this woman terms “compliance training” aka “90% of autism therapy” could be a slippery slope to making people like this woman, like my daughter, even more vulnerable to abuse.
Children with autism are being taught to function in the world by learning to pretend to behave like neurotypical people.
For instance, a big focus of Evie’s therapy was “making eye contact.” I couldn’t understand why this was so important. Finally, I said, “I really don’t care if Evie makes eye contact. I want to find a way for her to communicate what she needs.”
Who does eye contact REALLY help? Does it help Evie when it seems aversive to her? Or does it help other people feel more comfortable with Evie?
I’m getting seriously pissed off writing this.
Or how about this one? I have been arguing that I don’t want to see potty training as a focus for Evie at this point because I don’t think she is developmentally ready and because I REALLY want the first, biggest, and if need be only priority to be helping her to communicate basic needs.
One of the arguments provided by one of her educators was that by wearing underwear instead of diapers, her classmates would not feel she was so different.
I can’t believe I even kept my hat on after hearing that one.
Evie IS different. She will ALWAYS be different. And if school’s answer is to make other kids feel more comfortable about Evie’s differences by pretending she is something she is not, then I don’t even know what to say. I wonder how comfortable the kids will feel when Evie pees through her clothing while sitting next to another child. That ought to make her some friends.
Can’t we teach kids to honor differences? Probably not, when as adults, we are so focused on hiding them away.
Evie has a tendency to withdraw. She tends not to withdraw when the people interacting with her don’t try to force normal on her–and follow her lead. I will never live in her world and know what she is feeling. But I would go there forever, without a moment’s hesitation, if I could. To keep her company there. Because as much as I love her, as much as I try to go to her where she is, it must be pretty freaking lonely and scary a lot of the time. Not even her mama understands.
And I can speculate away at what Evie needs. And so can everyone else.
And we can try all different types of therapies and approaches to helping her achieve goals. From here forward, only goals that will be meaningful to Evie and what she needs to maintain her happiness.
But after reading that blog post, I will never allow anyone to force my child to be compliant. I don’t care what her cognitive abilities are, unless she is in danger or endangering someone else, she gets to say, “no”. And like anyone else, there are consequences to saying no. Sometimes the consequences are negative–like not getting the immense satisfaction of popping bubble wrap. And sometimes they are good–not subjecting yourself to abuse.
It is hard for me to pick my head up and look to the future for Evie. Because there are so many things in the moment to deal with. Because the future is uncertain and unknown. Because someday I will die, and Evie will still be here. More alone. More vulnerable. And that terrifies me.
So this blog post inspires me to think about serving a population of adults living with autism right now. Many of them alone. Vulnerable. Serving them serves Evie’s future. Serves mine.
And more than think. To do something. Something significant.
Thank you. That was a beautiful post and I could really feel your love and protection of Evie. She is a very lucky girl!
If I am understanding what you mean by flopping, I still do it at age 45 although it looks less dramatic because I have learned all (most?) of the rules about hiding my differences. But I only made it through university classes because of all the time I spent in the bathroom, in a stall, either crying and flapping my hands or doing what I call “hazing out” which I think might be a cousin to Evie’s “flopping.”
When things are too big, too hard, too involved to untangle and figure out where the starting thread is, my best choice is to go blank. If I don’t let my brain go away for a moment (or twelve) I am overwhelmed by anxiety and panic.
I can’t know what goes on inside Evie, but when I haze out, everything turns off. If I’m allowed to do it myself, when I feel safe, it’s good and it’s like when you plug a patch cord from a guitar to an amp — things get re-connected in my brain. If I haze out because I’m forced to, it’s terrifying.
My father used to get so upset with me and with the reports that would come home from school that he’s start lecturing me and the lectures would turn to shouts and he’d sit there and shout at me for I don’t know how long. (No worries, he and I have talked this all out since I became an adult and he understands and apologized and I love him.) I would start to lose my vision — it would reduce to tunnel vision — and my hearing would start to get small until things sounded like when you put a seashell to your ear. And sight would shrink until it was a tiny dot that winked out to total blackness and hearing would shrink until I was in total silence and I would sit there, frozen in my world of nothing, and feel sheer terror. I would feel like the world was never going to turn back on again. And I didn’t have enough words to explain what was happening to me so that someone could understand and not do it again. And I didn’t even have writing because one of the things I got yelled at over was that I couldn’t hand-write (dysgraphia) and I was 15 before anyone would allow me to use a typewriter (which is when I suddenly learned, much to my surprise, that I can WRITE!)
So if Evie is anything like me, that is what forcing compliance when she’s flopped is like. It’s horrific. Good for you for sensing with your mother-spidey-skills that the compliance therapy is a Bad Thing. Good for you for being so in tune with Evie!
I’m so glad that my writing helped. I sometimes get asked why I’m willing to put my garbage on display like that (I’m actually a VERY private person, though one might not realize it from my writing.) You are the answer. I write my garbage so others will hopefully not have to visit the dump at all. I write for Evie. I write for Evie and for all the countless Evies out there and I write for you, Evie’s mother who loves her very much.
Thank you for loving Evie and thank you for listening . . . not to me. Thank you for listening to Evie. That is everything I have hoped for.
Sparrow–I emailed you privately. I hope that is okay. Thank you so much for shedding potential light on the flops!
Hi Evie is so lucky to have you as a mom….understanding autism is a journey..mine started with my husband…and slowly got worse and worse…..o first he had dissascotiative disorder sory not good on the spelling…communication difficulties, misunderstandings all at work.
He was never diagnosed as a child…He was bout 47 when he was….then there’s hassles with managers (some were good and understood…..while he was in limbo awaiting diagnosis….it has not really stopped after diagnosis….lack of understanding is every where…….in fact he wrote a book which details life without a diagnosis ‘ high functioning and masking’ came second nature, so if any one wants to know more of his story…which is poss the same for many undiagnosed so called high fuctioning adults …..find it on amazon
‘ Becoming Unique by James charles ‘……..keep on fighting for your right to be accepted as
Autistic….and your unique take on the world. thanks for listening your blog by the way is right on one brave mom !!!!!!!
Thank you so for writing this (this is honesty sincerity, not a bot). I strive to be in tune with my own child as well. And I love Unstrange Mind so very much. I would be very grateful if you would contact me via email, which got auto-filled below and hopefully will be visible to you. Again, my gratitude, it is yours.
Thanks for your reply. I do not see your email address. I don’t understand what auto-filled means as people don’t usually comment on my blog 🙂 Please email me at anytime. My email address is email@example.com.
This is awesome. The above two answerers are my friends. Beth Ryan, I bet you could friend any of us any time you wanted and we would be all heck yeah! Unstrangemind is talking about how awesome this post is on a page of Autistic autism bloggers as we speak 🙂
Hello Ibby, thank you for replying. I would love to friend all of you! I’m unfamiliar with Autistic Autism Bloggers but it is very humbling to have my words read and felt by others.
I feel so many things, both about how I experience shutdown (after very emotionally stressful events, I actually fall asleep, and sometimes I feel inertia on me like an unbreakable weight; I’ve never thought about how the inertia feeling could be related to my Asperger’s), and how my Aspie son does. He was a *masterful* flopper earlier in his childhood, and we were counseled to, whenever possible, just step over him and wait for the moment to pass. Sometimes that would be frustrating, and throw off the timeline of what needed doing when, but it was better than him flinging himself violently to the floor, which was the alternative. I reconciled myself to the flopping by saying, “If it’s good enough for Gandhi, it’s good enough for him.” And it’s got better over time (he’s 10.5 now). I’m so glad you’re not taking this sitting down (ha.).
Jess–thanks for your insight. Honestly, the flopping doesn’t bother me. But I am going to have to share your Gandhi quote when someone else objects. I love it!
I love everything in this post so much I could cry….
Thank you so much Chavisory. Your feedback is humbling.
I am in my forties and making eye contact is a something I have to make a conscious effort to do, it is incredibly uncomfortable for me, almost physically irritating. reminds me of standing on the edge of a cliff when you are dizzy. The worst part is I do it to make the other person feel they can trust me. As if eye contact is better than my word or actions. I hate it every time I do it. I feel the same way about writing. It is physically exhausting for me.
I missed this comment yesterday. Someone commented on my friend’s facebook page, that eye contact is totally cultural. In some countries, it is disrespectful. In my opinion, it is disrespectful to your culture and your physical abilities to demand it. Even in a passive aggressive way.
Flopping or as I in my case, unplanned naps, are like meditation. You can go quiet for a bit in your mind to reboot. People spend years practicing yoga and meditation to learn to focus and clear their minds but some of us do it involuntarily just naturally. I can’t see how that is some how not really great! 🙂
Neko–involuntary meditation. Maybe it is some sort of evolutionary adaptation that some people–like you and my daughter are one step ahead on 🙂
This. Oh my god. I… thank you. Thank you for getting it. And that you aren’t familiar with Autistic adult bloggers and came to this conclusion on your own, I am impressed with you beyond words. The cost of compliance, of normalization, is far too high to be paid, and this is something I think everyone needs to read.
I went on autopilot instead of flopping, so I never got into that much trouble (it probably helped that the “gifted kids are weird” card was getting played for all it was worth and no one knew I’m really Autistic…) but I know a feeling much like it. Just, everything bounces, and I probably won’t remember anything you tell me while I’m in that state.
Calling everything a behavior is so hurtful, too- Autistic kids have wants and needs, and doing something that can’t hurt anyone in order to GET what you want… isn’t that how they teach us to try to get it anyways?
I have many thoughts. A blog post of my own is probably happening related to yours.
Alyssa, I wish I could say that I totally “got it” before. Something felt wrong and I couldn’t fully articulate the “why” –just that I didn’t want people forcing her body to do anything and that I didn’t want people trying to “fix” her. It was Sparrow’s blog post that clicked everything into place for me. Please link me when you’ve written your post. I feel like I am going to spend the next weeks reading adult autism blogs.
Also, I couldn’t agree more about behavior. Behavior seems to be a dumping ground for we don’t know why this kid is doing this. Not acceptable.
I’ve read “No, You Don’t” as well. I know Sparrow. It was hard to read, and it is extremely important. And the feeling that “something’s wrong, not sure what” is the beginning of getting it. (Reading your earlier stuff, I think maybe you got more than you’re giving yourself credit for, though.) And I will be sure to link you to it, and I’m thinking link TO this in it too.
Thank you Alyssa. I am so incredibly grateful for all of the insight I am getting. I cannot believe that I didn’t think about connecting with adults that have autism for information/help. The subject matter experts!
You’re thinking about it now. I’m in the blogging group that Ibby and Unstrange Mind were talking about too 🙂
You put into words what I cannot. To see an adult use force on a small child is common and apparently not unlawful. Reasonable force. I copied your letter by hand and I shall keep it till nx time. Good for you on looking out for your kid.
Thank you Pat. I wish you the best of luck on your endeavor.
As an speech pathologist, I want to share that your post is so moving, so inspiring, and so spot-on that I am typing this with my mouth literally hanging open. I was taught to treat those with Autism with an ABA method. A few years into my practice I realized that method was absurd. And forcing kids to look at me and do “good sitting” was really pretty much worthless, and in fact, harmful to the child! I started learning about Floortime, and Dr. Stanley Greenspan, and I changed the way I practice. The difference I started to note in my clients was exceptional, the advice I gave was finally useful, and changing the way I thought about providing therapy literally changed my life. I wish all parents thought as you did, and I wish all parents supported their children as you do. Your way of thinking and being is appreciated by your daughter more than you know. Never forget that.
Thank you Melanie. Your feedback is very valuable. I could write a book on all of the things that have NOT worked for Evie. ABA being at the top of my current list. Also PECS has been a miserable failure for her. Four years in, and her team is finally agreeing that it isn’t working and willing to branch out. I find the more rigid the method, the worse for Evie. I am going to check out Floortime and Dr. Stanley and certainly appreciate any insight you or anyone can provide.
I just keep hoping that developmental interventions will really catch on. In DIR/Floortime we are training our practitioners to respect and honor all children, their interests and their right not to be trained to look like everyone else. Evie sounds amazing and is lucky to have you standing up for her!
Thank you Amanada. It is good to hear from professionals that my intuition has some grounds. Almost as good as it is to hear from adults with autism who have been there, done that.
Oh my gosh. I have…been…overwhelmed with overwhelm. And hope for the world. And that sort of distant affection one can have for someone whose words one reads, but who one does not actually know.
I cry happy tears for your little girl. She is one of the luckiest autistic kids on earth, to have a parent who understands right now, right this minute, that teaching her to comply is not right. So many of us are still struggling to overcome that training, she has a head start.
Thank you. Thank you. Thank you.
Thank you so much. I, too, am overwhelmed with the response my post has gotten. I have no idea how it happened to get so much traffic–before yesterday, hardly anyone read my little blog. But the traffic is opening doors for Evie and turning on lights for our family. And I am not going to let this help go to waste for Evie. And I am going to give back to the adult community. Somehow–more on that in a new post. You ALL have blown me away with your compassion and kindness.
I just read the blog post you were writing about and it almost made me cry as well. I am an adult with an autistic spectrum disorder and for years the emphasis for me has been ‘normalising’ my behaviour and speech etc. As a teen the doctors refused to believe I had autism so put further pressure on me to behave ‘normal’. A lot of people ask me, ‘what’s normal?’ and I reply, ‘what the psychiatrist said was normal. Not me.’ Even now, I feel pressurised into living a regular life independently and it feels like other people cannot accept that maybe not everyone wants that life. Evie is very lucky to have a mother who knows exactly what she wants for her child. Don’t let the ‘professionals’ bully you or her into other therapies.
Thank you so much for your reply. It is really tragic that we still cannot accept differences in people. You would think after all that we have been through as a people, that this theme would come through loud and clear.
One of my first responses was “do a functional analysis” because all too often people who are in charge of something describe a Behaviour in a way that suits *their* perceptions. As you point out; Evie might have chanced upon “flopping” as a reaction to feeling tired, we all droop and flop a bit when we are worn out! but her educators thought she was willfully using it to escape, and that’s not fair.
The way I look at this is: if it is physical, then they need to revise their setting to make her more comfortable, give her an OT break, or hey, allow her to sit how she wants. Secondly, if it s communication:LISTEN! What are they doing when she flops? Make the lesson shorter, more engaging, more relatable, build in breaks, change the setting! And give her another means of asking for a break that everyone will understand. A break card system or a “this is boring, ramp up your teaching style or I’m out of here” card (that might offend though) 😉
Too often educators try to squash the child into the setting instead of changing the setting to suit the child. Early learners need to find education comfortable and to do this it has to fit them. Once they start to progress, you can look at making little changes to help her adapt to the typical structure- at her own pace.
As for toilet training? Highly overrated! Pull-ups are great. When *you* and Evie are ready you can have a go at some toilet timing. She doesn’t need to be wet and uncomfortable to learn. My daughter was 6 when we trained her as she wasn’t ready before. When she was ready, it took less than 3 months. In the summer. When she wouldn’t feel cold when wet and had less layers to negotiate! She also had a way of communicating that she needed it.
And needed it. And needed it! – you really miss pull-ups when you have a kid who wants to wee in every toilet and behind every tree between here and the Wicklow Mountains.
Follow your child- let everyone else get on board with you for a change xx
Lisa, one of the tests that I just asked for was an FBA. Our educators gather copious amounts of data with Evie–documenting flops, etc. But it is unclear to me, thus far, how we are using the data to improve Evie’s educational outcomes and her life. It seems to me that the flops may have several functions…mainly, I’m thinking that since they seem to happen at transitions often, I am thinking that the transition is too much–to unknown, too scary, etc. And she shuts down. She doesn’t flop at home very often. I think that might be because she trusts me and her other caregivers so the transitions aren’t so scary. We also respect her flops and don’t pressure her to get up before she is good and ready.
The potty training thing is an ongoing debate between school and home. I appreciate you sharing your experience with it. Thank you so much for all of your comments.
It might help if we look at this differently. We dont need to ‘force compliance’. If we change our communication style, we can enable our kids to co-regulate with us. Co-regulation happens when two people have different but compementary roles and are working together towards a joint goal, like I am doing here with my son http://notnigellanotjamie.blogspot.co.uk/2011/05/co-regulatory-juicing.html. This is an approach that takes account of the child’s difficulties so that the parent changes their communication style to support the child to step into their role. There is no forcing at all, as you’ll see in the video footage of me working with my son.
Zoe, thank you for the link. This seems to work well for your son and seems respectful of him. I am definitely going to look into this as a possibility for Evie.
Thank you for writing this and even more for giving your daughter the gift of “no”. I’m only just now realizing the damaging effects of having compliance drilled into me as a child. I grew up undiagnosed but was taught early the value of appearing to be normal at the cost of many other things.
One thing in your writing that jumped out at me is your concern that Evie might be lonely and scared much of the time. While I obviously can’t know what your daughter is thinking, I can tell you that I wasn’t very interested in communicating or interacting with others as a child and I don’t ever remember being lonely. Scared, yes, mainly because I wasn’t given the tools to understand and cope with the world around me. But not lonely. I was (and still most often am) content to be alone with my the incredible world that exists inside my head. It must be hard as a mother to think that your daughter is feeling lonely and scared and not be able to know for certain. I can’t know for certain either, but it’s very possible that Evie is more content with her level of interaction/communication than you might think.
I see that others here have reached out to you come and join the Autistic community and I hope that you will. I’d love to get to know you and Evie better. 🙂
Thank you so much. That is such a gift to me…I worry so much about her being lonely. Worry based on the assumptions I make from my own perspective. I need to remember that Evie, and everyone, has his/her own perspective. As a person that tends to be introverted, I should know better about that assumption. I guess I worry that she is thinking, “no one understands me. i wish i could be surrounded by people who do.”
So, how do I join the “autistic community”? I would love to but I don’t know the secret password 😉 aka where to go about doing that!
I gave you the “secret password” in email. 🙂 I hope you do join us!
Just realized that I never made it back here because I was too busy trying to figure out how to get the secret password to you! Also, I think you understand Evie quite well. 🙂 It’s hard being different but having even one person in your life who “gets it” is so so huge. It makes all the difference.
Thank you for writing this. I’m not well-versed in terms such as ABA or PECS, but the general nature of “Social Compliance” seems too militaristic for my tastes. The way it’s set up, it’s about forcing a statistical “normal” on people that has been idealized ad nauseum, much like how eating disorders are the result of forcing an idealized (i.e. skinny) body image on someone.
A bit of pointless ethos to express my outpoint: I’ve recently graduated from a high school which used this compliance-theory rhetoric, and it was rather uneffective. In fact, most of my social skill wouldn’t have been shipshape for college if–get this–I hadn’t rebelled against conformity to gender roles, started watching MLP:FiM, and joined into the Brony community.
Now, if social skills therapy emphasized some of the same norms expressed in MLP:FiM (i.e. being understanding of different behavior, not relying on preconceived notions, etc.) and used the same grey-area modeling of social scenaryos instead of these forced-conformity, black-and-white social scenarios where everyone is expected to fill the role of an idealized extroverted/sanguine individual or expect certain social rejection.
So to sum it up: They believe that social skills and the implementation thereof are “their way or the highway”, where “Their way” means behaving like a run-of-the-mill ‘preppie’, and the highway is fraught with rejection and bullying (thus using scare tactics to force someone into conformity). Instead, skills therapy SHOULD emphasize tolerance of different behaviors, should delve into that grey area between compliance and noncompliance (i.e. mitigating the overall impact of the behavior, such as allowing stimming, but in a more controlled manner within an academic environment, or providing an access to an environment to do so if it would extensively disrupt the academic environment) instead of forcing compliance.
The fact that you understood that the goal – the one and only goal – is your daughter’s happiness absolutely ROCKS! I’ve written many posts about the problem with with physically forcing a child, with the emphasis on compliance, and the problems it causes. But if I could share one piece with you, (not gonna link, that’s not polite) – it would be my Words That Hurt essay about behavioral terminology and the shame they cause. Keep it up, mama! You are doing an amazing job.
Oh, please link! I want to arm myself with every iota of information I can. And I want others to be able to access information easily. I don’t have any idea how but I am getting more traffic than I ever even imagined my personal blog would get. Thanks Brenda!
I ran away from home when I was 16 because I didn’t know how to just say no. I was in a horribly abusive relationship as a teenager because of my compliance. I got pregnant with the boy because of compliance. I’ve done so many things and have had so many things done to me because I never really learned how to say no.
I’m learning how to now, and I’m really happy that your daughter is learning how at such a young age.
I’m sorry for what you have been though and I’m happy that you’re learning to say, “no”. I think most people, are programmed to some degree, to be compliant. I think of how most people would never consider challenging a doctor, etc. So for those who have had a good deal more compliance training….well old habits die hard. But may they die forever. Thanks for sharing…this helps keep my eyes wide open and I appreciate that.
Don’t take this the wrong way, since I ask out of concern, but are you doing anything about it? Are you demanding better treatment and further autonomy? I sure hope you are. Plus, I’d suggest making this as public as possible. Go to the media about how these people treat your daughter. Make sure everyone knows how unacceptable it is to treat anyone the way they are. And get her involved as much as she possibly can be. I’m also autistic and had to self-advocate from an early age, and it really helped.
Hmmmm, I don’t know exactly how to answer this. The forced moving of her body was stopped last year when I had a little flip out over it. The potty training is being taken off of her IEP. I should say that I believe that ALL of Evie’s educators have good intentions…just flawed execution. I feel like I a always advocating for better treatment of my child. Although, I have not known that she was being mistreated in ways I hadn’t considered until I connected with this adult community. Her team has historically capitulated when I insist on something–not without a debate much of the time. Bottom line is that if I feel she is being mistreated, I will bring it to their attention and move heaven and earth for it to change. If it doesn’t, she will be yanked out of school and homeschooled until I can find a suitable situation. So the answer is yes, when I don’t like something it gets changed. But no, because I haven’t necessarily known that I don’t like it until the last few days. Thanks for your thoughts.
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For instance, a big focus of Evie’s therapy was “making eye contact.” I couldn’t understand why this was so important. Finally, I said, “I really don’t care if Evie makes eye contact. I want to find a way for her to communicate what she needs.”
There are entire cultures where eye contact is seen as rude and intrusive. Tell them to get over THEIR need for eye contact and figure out how to communicate with her.
Thanks for your reply. I agree that eye contact is cultural. Thankfully our school team has backed off on this.
I am always open to discussing a ideas which are different than my own. And I appreciate that you’ve taken the time to read my blog. However, your comment feels more like a personal attack than the opening of a respectful dialog. For this reason, I’ve decided to delete it. If you would like to rephrase it an present it in a more constructive way, I would be happy to respond to the points that you are trying to make.
As usual, it has taken me far too long to comment on this wonderful blog which I saw when Ibby shared it on her page. I’m glad it’s been reposted by TPGA and that Sparrow’s harrowing but important post has also been shared there. I love that this message is getting a broader audience. I’m sharing your post on all my social media channels – I hope you get lots more readers 🙂 I have twin boys on the autism spectrum, Owen and Oliver, and Evie reminds me of Owen in many ways. Owen would often “go boneless” and has always been low-toned so yes, sometimes there were physical reasons why he couldn’t move. I found that when we discovered a way of communicating that worked for him (both expressive and receptive) his need to go boneless reduced dramatically. And I am so with you on the toileting too!
Thank you so much–that’s very sweet. What you say about communication helping to reduce the flops makes sense to me. Evie doesn’t flop as much at home and I think it is because I am able to use my mama instincts to meet her needs. She isn’t a kid who has a want of wants or needs so they are pretty easy to anticipate. When she is at school, I think they might have more trouble because they don’t anticipate like I do. Plus, they have more demands on her. Since you have a low-toned baby, I bet you appreciate, the way that I do how Owen’s body can melt into yours. Such sweetness!
Thank you so much for sharing this post! I am am educator of students with Autism and my friend shared this with me! I completely see and get where you are coming from, at times I totallly disagree with things that we are “supposed” to have these kids working towards. I have students that are in my class in grades 1st and 2nd who are still not potty trained and who knows if they ever will be and their parents realize that and know that it isnt a huge concern over getting functional communcation skills in place so they can express to others their needs and wants!
It makes me step back as an educator and really think that it is about teaching there are differences in every person that you are going to meet and why are we trying to make them “fit in” who is to say what fitting in really means!
Thanks for being willing to think about things from a different perspective, as an educator, Aly. As a parent, it can be really intimidating to go into a room of “expert” educators and have a different opinion. It is helpful to know that not all educators come from the same place–and that some actually agree that all children deserve to be respected as individuals. When I see replies like yours, I have hope for team collaboration and that Evie’s education may not always be an uphill battle of “us against them.”
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Thank you. Thank you so much for writing this, for thinking this way, and for being a truly supportive parent to your child!
As an autistic adult, I frequently find myself terrified for the safety and well being of autistic children, due to harmful conditioning and abuse masquerading as ‘therapy.’ Forcing ‘compliance’ only leaves children more susceptible to abuse later on in life. And focusing on making autistic children act neurotypical (stuff like eye contact, not stimming, etc.) is entirely counterproductive to developing real communication skills and coping strategies.
You definitely sound like your on the right track, as a parent, and as an ally.
Thank you Lanthir. I think you raise an important point about forcing Autistic children to act neurotypical is counterproductive to real communication. I have another school meeting tomorrow and will be bringing up this point. I appreciate your feedback and am definitely trying to improve as a parent and an ally but I know that I have a long way to go and a lot of work to do before I am solid as either.
You’re probably already aware, but research is your friend in this, and sources that are actually written/run by autistic people are almost always more helpful than ones that aren’t. Here’s a link to a fairly extensive listing of good resources: http://not-allistic.tumblr.com/post/41162023459/the-care-and-feeding-of-auties
One other thing to remember: all parents make mistakes, especially if their child has special needs. Just do your best, admit it when you turn out to be wrong about something, and don’t guilt trip yourself if you mess up from time to time.
Thank you Lanthir. I will definitely check it out.
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All of my friends were discussing this post when it first went up a month ago. I finally had the chance to read it now. And I don’t know what else to write without being redundant, except that it is so exceedingly, despairingly rare for people outside our community to understand these things, which only makes it so much more validating and encouraging when it does happen.
Compliance is the goal of the vast majority of autism therapies, not the support of development of functional skills. Compliance is the attitude that leads to abuses like those at the Judge Rotenberg Center. And all of this returns to this insidious attitude that aesthetics, that form, are what’s important.
Thank you Lydia. I am a great admirer of your work. So your thoughts mean a lot to me. I also agree that compliance is the slippery slope to abuses like those at JRC.
Form as in ‘fetishes – e.g. “voodoo dolls” – are essential facets of a “Normal” armamentarium, if one speaks of social matters. Namely, the appearance of the thing is the totality of its function – and one must be an adept shaman/witch-doctor to use it.
The fetish signifies its owner has power to onlookers (impression-management), and, or so the unconscious belief goes, it supplies its power to its user.
When a person is treated as a fetish, they become an it – an objectified tool in the hands of its user / owner; and the sole purpose such an object has is impression-management / manipulation of physical and magical entities.
It is NOT fun being treated like a fetish.
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love this….and we live this. Our son is 10, now homeschooled (unschooled actually right now) and the happiest guy….but it wasn’t always like that. I believe that we “saw the light” early enough to have maintained his personal integrity and ability to advocate for himself. Having become an unplanned public figure in our area with regards to special education law and disability (Don’t like that word but it get the point across) rights, I endured public personal attacks, was taken to due process by our district (silly us, we just wanted our kid to go to kindergarten with an aid and not go back to the “special” class…….he never did get to go to school that year even after we prevailed easily in our case)……and caused many shitstorms myself, often unintentionally because of bumping up against some unseen glass wall or someone’s ego that had nothing to do the child or issue at hand….
All of this, was because of an expectation of how children should to be treated…..like people, who need some specialized support…..but the personal cost got too big and we bailed….totally. We moved away to the mountains, and now we just do life. No therapies, no school….just life. We go places, play, visit, eat, shop, read books, watch TV……and life is just peachy
I have attended hundreds of IEPs and advocated for many many kids…..I know spec Ed law (I learned out of necessity…..I always told our old school district that they “created the monster” that I became). But I also know that so many of the educators, while having good intentions, don’t really understand our kids, nor do they have the perspective of adult asd advocates who have SO much to say and how their incredible hindsight guides how some of us have now chosen to live with our asd kids…..
Thank you for your post….all parents should read it….all parents should read what the adult asd advocates have to say…..acceptance is what we need, and that will happen with understanding.
Thanks for listening. S.
Thank you for such a thoughtful reply, Susie. It is so nice to hear from other like-minded parents–who have chosen the path that we have and who are happier for it. Good for you for bailing…too bad that following your instinct came at such a cost to you. ❤
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Could not agree with you more about the hazards of compliance. Interestingly, my behavior in class can look compliant, but my reasoning is less “must obey authority figures” and more one of the following, “Okay, this instruction makes sense,” or “All other instructions this person has given have made sense, I will give him/her the benefit of the doubt on this one, even though I don’t see the point right now.” It really helps if teachers see “Why are we doing this?” as something other than a challenge to their authority. Teachers with a good track record get lots more “compliance-like behavior” than teachers (or therapists) with a track record for unreasonable instructions. Explain-the-idiom card decks when I have already explained that I understand idioms, I am looking at you.
I typed out my feelings on this post and it ended up getting kind of wordy, but basically boiled down to asking Tumblr users who are parents and school officials to make it clear to their principals and superintendents that they demand inclusion, not abusive/traumatic assimilation:
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Thank you for this blog. Thank you for standing up for your daughter. Thank you for being one of very few NT’s that support those of us with ASD!
I appreciate your statement, “Can’t we teach kids to honor differences? Probably not, when as adults, we are so focused on hiding them away.” I feel compelled to share it as my Facebook cover photo.
Thank you so much for this .My son is only 2yrs old, they recommended ABA (also OT ) for him at 18mths and I turned it down because I didn’t feel comfortable with the bribe and reward system .We teat our son with unconditional love and the ABA system does not mess well with our parenting style (AP ,gentle parenting).I feel like I have found validation for my choices to not put my son in therapies through this blog post .I have had many people (sometimes even myself) question my choices but after reading all the comments I know I am doing right by my son. As yet my son has been evaluated by early intervention but we are on a waiting list for an apt with a developmental pediatrician next spring which was recommended by our sons pedi. I am still on the fence about following through with this apt and questioning if its in the best interest of my son as he is going to be home-schooled anyway .I would love to hear from some of the adults that posted comments here what their thoughts are on getting or not getting an official diagnosis .My apologies for my inevitable grammatical or spelling errors due to dyslexia .
When parents of autistic children gain a greyer understanding of their child’s autism by reading the works of autistic adults and getting to know some of us personally, great things happen. In addition parents can see the huge potential within their child and avoid squishing that potential by using strategies spectrum adults decry. I write a positive autistic spectrum blog for this reason healthypossibilities.net
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Reblogged this on Overexcitable and commented:
“Children with autism are being taught to function in the world by learning to pretend to behave like neurotypical people.”
That goes for many other atypical behaviours, too, including thinking too fast/deep/far.
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I am not entirely certain as to the purpose of eye contact among persons of roughly-similar social rank, but I’m far more certain of its purpose when one participant is regarded as a lesser being: establish and confirm the dominant position of the greater.
Ultimately, all of what was done to your daughter was done to teach her her ‘place’ among her betters – that of fawning supplicant, an objectified tool whose sole task is to make her betters look and feel as good as possible.
I speak from experience here. I am having to grow a spine and learn to set boundaries – which compliance training is designed to destroy. In my case, it was ‘disorganized’ compliance training done in informal settings, but the effect is unmistakable: reading about ‘ABA’ causes a degree of rage that I have trouble putting into words.
The ultimate goal of such training, by the way, is a DEAD autist – either a literal corpse, or someone who is so dead inside with hopelessness that they avoid Normals as much as possible – while simultaneously enduring a neurotic compulsion to literally worship their Normal betters / owners / puppetmasters.
Like I do.
The link to the original “No you don’t” post is broken, but here’s a link to the post that works. http://www.thinkingautismguide.com/2013/02/no-you-dont.html
I am reorganizing my blog. The link to the original will be back up within a week. I hope that people will continue to visit the original because I sell my books and art there, too.
Wonderful! That post is so moving and important. I was trying to find it to post on linkedin in connection with a discussion and was really glad it was at TPGA. Good luck with the reorganizing – I hope it goes smoothly!
Thanks. That post is back up again. A few more are coming back. A new one is coming this week. And I’m working on the HTML for a website to showcase my book, t-shirts and stockers, album, etc. that I have created.
i am in tears. i understand what you say so completely.
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This was shared with me by a friend. My son, without any doubt has aspergers. i spent 6yrs studying health and human services with a concentration in psychology. i knew my son was not a typical boy very early on. But part of me refused to accept the premise something was ‘wrong’ with him. he stated kindergarten thru k12 a few weeks ago. in the years leading up to him starting school my biggest fears were the affects aba would have on him and how it could ostracize him. i just couldn’t accept the idea of ppl ‘forcing’ my child to ‘act normal’. the very idea kept me awake nearly every night.i know some ppl don’t agree with my choice to home school but i will ALWAYS DO WHAT I ‘FEEL’ IS BEST FOR MY CHILD. thank you so much for sharing your story. it is reassurance that what i am feeling in normal and okay and gives me the strength to stand up to those who think i made the wrong choice by home schooling. funny, none of them have ever really even been around an autistic or aspie, yet they think their age= wisdom.
sometimes i just want to scream “being in a normal school with ‘normal’ children won’t MAKE him ‘normal’!!!
oh. another thing i wanted to touch on. about a wk ago my son started flopping.. a few of the mom’s in my k12 support group suggested a therapy ball to sit on while he does his work. i bought a 55” one from target for $20 and inflated so his knees would be at a 90. it has a sand weight in it so it doesn’t roll away with him lol….. hasn’t flopped since!! and he loves it! very surprised at how well he is staying on task and ‘in the moment’ with me, even when he gets frustrated!
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Them saying that by not forcing (not the word they used but I can’t remember what it was) compliance we would be reinforcing that flopping is a way to avoid doing something she doesn’t want to do.
Was the word ‘coercing’? I remember when I was about three, one of my ABA therapists talked about ‘the importance of coercing compliance’ to my mum, and she threw him out of the house and talked to the lead so he wouldn’t come back. Because Mum’s well educated, she knew that coercion and force are two different words for the exact same thing.
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I just linked to this article from Facebook, and wrote a piece of my own if you’d like to come read it:
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