The Trouble with Treating “Behaviors”

A child throws a chair or their shoes at school and the parents are told of their child’s “problematic behavior”.  A child pokes another child repeatedly and when told not to, laughs and does it again.  The teacher tells the child they will not be able to go out to the playground at recess as punishment.  A child runs from the classroom, causing the teacher to stop her lesson and pursue the child.  The child is given a time out for displaying “challenging behavior”.  A child does not respond to the teacher, does the opposite of what is asked and the parent is informed that their child is “out of control” or “refuses to listen” or “is being disruptive” or any number of other comments that so many parents routinely receive from the various teachers and schools that our kids attend.

Each time it is the child’s behavior that is highlighted, documented, and charted.  Reward systems are put into place, time outs are given, the child is told there are consequences to their actions and things they love are taken away to demonstrate this point.  The thinking goes that behaviors must be treated.  But I question all of this because I’ve read too many stories that beautifully explained these so called behaviors by many people who spent a great deal of their childhood being misunderstood and told their behaviors were “out of control” or “challenging” or they needed to understand there are consequences when they were responding to other things in their environment.

Imagine you are on the school bus and another kid is seated directly behind you.  They scratch the back of your seat with their fingernails.  The sound of their scratching, coupled with the vibration caused by it, makes you feel as though your entire body was covered in crawling ants and the vibration makes you feel physically ill.  You do not have much spoke language that you can easily access and the language you do have is thought of as echolalia so it is often ignored.  Never-the-less you do the only thing you know to do, you shout, “No!  Stop doing that.  You cannot hit, you cannot punch, you cannot bite!”

The other kid thinks this hilarious and realizing you are directing this at them, continues to scratch the back of your seat, except now they are doing it with renewed vigor.  The bus matron comes over and tells you to stop yelling, that you are being disruptive and need to be quiet.  The kid behind you continues to scratch your chair, and despite your protests, despite your attempts to make him stop, he will not.  Eventually you turn around and spit at the kid.  The matron comes over, now furious and tells you that you must apologize and that she intends to tell your parents how badly you’ve been behaving.  So you spit at her too.

When the matron tells you that you will not be allowed back on the bus, something you love riding, you begin to cry and bite yourself.  Again you are yelled at, told to stop it immediately….  When you get home your parents tell you this kind of behavior is unacceptable and on it goes.  No one says a word about the boy who was making your bus ride miserable.  No one talks about his behavior or that there are consequences, in fact there appear to be no consequences to some people’s behavior, only yours.  The message you learn is that terrible things will happen to you, seemingly without reason, without any explanation and that you must be hyper vigilant and avoid sitting near any other kids.  The next time you board the bus you attempt to sit in the very last seat, but are told you cannot and are seated in front of the boy who delights in scratching your seat.

(The above story happened to someone I know well and it was only when I was able to type with this person that the whole story came out.)

A few months ago I read about a boy whose older brother would punch his friends on the shoulder upon seeing them.  They all smiled and laughed.  After much observation, the younger brother decided that this was a good thing to do, especially to someone you liked and wanted to be friends with.  So the next day when recess rolled around this boy went up to another kid and punched him in the shoulder.  Only the kid didn’t laugh or playfully punch him back.  Instead he yelled at him to stop hitting him, called a teacher over and the other boy was sent to the principal’s office.  The boy was told if he continued “picking fights” he would be expelled.

These examples are but two of dozens about so called “behaviors” that are seen as problematic and in need of various interventions to deal with them.  And yet, when one listens and asks non-scolding questions from a place of curiosity without threat of admonishment there is almost always a reason for these so-called “behaviors” and the reasons may illuminate why the various interventions to treat them will not work, or will work to make the person learn to camouflage or quell their behaviors, but will not help the person learn how to cope or deal with the things causing the “behaviors”.  Treating actions that are seen as problematic as though they occur in a vacuum is like applying a band-aid on a rash caused by allergies.  The band-aid might cover the rash from view, but it will do nothing to treat the cause.

It is interesting to note that there are people who consistently work with those who are known as having “problematic or challenging behaviors” and yet, all of those so-called behaviors disappear when they are treated with respect, presumed competent and they are not treated as though their actions are intentionally disruptive.

Soma Mukhopadhyay and Emma ~ September, 2013

Soma & Em copy

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54 responses to “The Trouble with Treating “Behaviors”

  1. I could write a book about this. At this point, we have all figured out that Marisa’s violent behaviors are caused by simply not wanting to be at school. She is perfectly fine doing something she enjoys, but the minute you give her work to do, she lashes out. Every.Single.Time.

    They tell me that she understands the work, though I’m not sure that she does. She is happy at home. She walks in the door, immediately removes her shoes and socks, asks for a snack, retreats to her room with her music of choice, bouncy ball, and lights. And is perfectly happy. We very rarely see this behavior at home. But at school, it’s a problem, as no one wants to see the teachers or other kids get hurt. So, what to do? Keep her home? That’s obviously not an option. So on and on it goes. 😦 No easy answers.

    Friday, Risa had dental surgery. Once a year we do this. She’ll be sedated, they’ll pull any loose teeth, take xrays, do a cleaning, etc. It’s done in a hospital type setting. There was no school that day so Jesse was with me.

    Anyhow, they gave her the anastesia and also novacaine as she had five baby teeth that needed extracted. When waking up from the anastesia and not feeling her mouth, she FREAKED out. She first started poking at the holes in her mouth, causing it to bleed profusely. As I was getting the nurses in there, she started biting her toungue. Freaking out because she couldn’t feel it. Long story short, it looks like raw hamburger now. She’ll have to see an oral surgeon. They ended up having to give her Valium and somewhat restrain her, feeding her ice cream and popsicles til the novacaine wore off. And of course me, being me, completely freaked out. They wound up putting me and Jesse in another room. It was awful. We got home at four thirty and she slept til seven the next morning.

    Anyhow, most people would categorize this as violent behavior. Which it was, but there was something causing it. There always is. That’s the moral to the story, I guess!

    • Oh Angie… that sounds so so horrible. What an absolute nightmare for all of you. I’m so sorry.
      Em also had to go to the hospital for dental work. It was awful. One of those days I’ll never forget, wiith her poking at her mouth, causing it to bleed, the doctors telling me they wouldn’t let her go home until she was calm, me telling them that once home she WOULD be calm, but that the hospital was what was freaking her out. Finally because she began screaming so loudly the other kids were becoming agitated, they ushered us out of there.
      Last time she didn’t have to be sedated, was able to tolerate having the cleaning and sealant put on in the dentist’s office, but the novacaine completely flipped her out. Nothing like what Risa went through, but it was pretty awful. I finally put a timer on and just sat with her watching the timer for an hour and a half until the timer beeped and the novacaine (luckily) wore off by the time it beeped.
      Horrible. Horrible. Horrible.
      Sending all of you love.

      • Risa was calm once we got home, too. Of course, by then the novacaine had worn off and she was so exhausted she fell asleep immediately, then slept for 16 hours straight!

        Jesse was the calmest one there. At 8 years old, he was the one calming ME down. He had my face in his hands, telling me “Look at me, Mom, don’t look over there. Do you need a drink? Should we go outside?” That kid is amazing. He totally took charge. They wound up putting us in an empty room a few doors down cause I was freaking out so bad. Joel and his mom came out, by that time she was sedated, but seeing them helped a bit.

        I just don’t think I was cut out for this.

        To top it all off, Sunday nite I’m giving her a bath, and noticed a huge boil on the back of her leg. She has ANOTHER Mrsa staff infection! Whether it’s the same one or she got it at the hospital, I don’t know. But we had to go in Monday to have it lanced and drained, and get antibiotics for it. I’m telling you – my poor kid just can’t catch a break! 😦

    • With the school system having more awareness and mostly wanting to track and fix behaviors, I am sure they would like it one size fits all, but everyone NT, autistic, or whatever label first and foremost they are unique individuals and deserve to be treated as such not to mention compassion and kindness go a long way in understanding the student and the difficulty the family as a whole is experiencing. I used to get so many bad notes about Brooke that I would try different medicines to no avail and I finally decided I might need the medicine if it wasn’t helping her. The negativity and daily notes were killing me and she didn’t even throw a temper tantrum. She just didn’t do anything at all. Back then they wanted to use food/ snack as a behavior treat. This broke my heart because if I waited on her back then to talk for food she would have starved. She is 20 now and still doesn’t really asks. She waits on me to offer or she does a grab and run. I was wondering if the school had allowed Marissa to work for a very short period of time and then be rewarded with her music or a bouncy ball break. If she knew she had her favorite thing to look forward to she might be s little happier. I don’t know what the work is but if they say she knows it that is part of the problem also. If she knows how to do it then why should she have to keep doing it. I know what the educators say because I was one. But if you want to find causes it might be something to look at. I want even tell about the 4 times Brooke was put to sleep for dental work except thank goodness for out of the box thinkers. My husband dressed out and went to or to help put her to sleep and 15mg of valium does not even phase her. Marissa sounds like Brooke in regards to shoes and socks off, snack and off to her room with musical toy or iPad. Except Marissa sounds calm. Brooke runs in and out up and down stairs grabbing more food to dump in her bed because of her stomach issues. Thinking of you and all the others that have posted knowing I tried to make a difference in the education system but not feeling very successful. When special ed was on board and trying to be helpful the general ed./inclusion teachers thought it was too much work and was going to mess up their state test scores. 😦

      • Diane, I cannot imagine how frustrating it must have been to try and do what you believed would help your students and then have to fight all those above you because they believed otherwise. I am sure you did make a difference. I bet there were plenty of students who still remember you.
        I still remember a history teacher I had in high school. She was tough, but boy did I love her. She believed in me. She knew I could do the work and though it was hard, I worked harder for her than any of my other teachers because I knew, intuitively I knew that she believed in me.

        • Yes, the students were not the problem. The lack of communication, understanding, empathy for outside the norm and paperwork were the main factors that forced my retirement this past year. I also jumped from 15 years of teaching kindergarten to middle school special education and it blew my mind how many educators at the middle and high school level did not have any understanding of human growth and development. 🙂 Thank you again for the kind words.

          • I just thought I would share one light hearted moment where I defended a behavior of a student on the spectrum and told I was crazy that the student knew exactly what he was doing. The middle school had a technology class and they were going to use computers to research bridges and then construct one in a group. The student came into my resource room crying and said he was going to be sent to the principals office. I asked why and he said he went on Google and he wasn’t supposed to. The teacher actually was kind enough to ask my thoughts and she said he had went on google 3 times when they had free time and he was supposed to use some other program. I guess she thought he was defying her but what took the cake was she looked through the history to see what they were really doing on the computers and he had been to the singer Fergie’s website when he researched bridges and when the teacher pulled it up there was Fergie in her lingerie on the cover of her cd. I told her that I was sure when he googled it for research purposes that it had linked him to that site b/c Fergie had a song called London Bridges. She thought he was looking at girls and the lead male special ed. Teacher said the student knew exactly what he was doing and he should not have done it. I disagreed again and discussed the problem with the student. Crazy or not he was a happy camper again and didn’t have to go to the principal. See I just think different but I had also bought Brooke that cd. 🙂

  2. I couldn’t agree more about this, and thank you for putting it so eloquently as you always do. When trying to help someone who is struggling, it is so important to look at what is driving the behavior. Quite often it is something sensory that is causing pain, overwhelm, confusion, and so on. The so-called professionals need to learn a whole lot more about what is underlying the behaviors and I hope my books are helping. For example, if a therapist or teacher is working with a student who can see and hear fluorescent lighting which gives the student eyestrain and a headache, it is going to be exceedingly difficult or more often impossible for the student to sit still and “behave.”

    • Right. The sensory piece is huge and often (I’m now beginning to learn) is much bigger than the obvious things I would initially be on the look out for. The sensory piece might include sensing another’s upset or anger or emotions and becoming so overwhelmed with them that the entire person shuts down, or going into fight/flight mode. Having a cold or a headache, or any number of things might cause so called behaviors. Sometimes it can be obvious, but often not so much.

  3. A boy I knew in school – to my best knowledge, a neurotypical boy, if a little odd in his choice of clothing due to being from another country – had a hard time with some kids bullying him. My science teacher had the room seated alphabetically, so he was beside me and they were behind. You know the compass from a math set? They were stabbing him in the back with it.

    He yelped a few times in class, and the teacher got angry. When he protested, he was told to shut up, that the teacher didn’t care.

    (I noticed that the kids were stabbing him because they’d do the same to me, but he was bigger than me and so wasn’t able to squeeze himself against his desk so he’d be out of reach like I was. And when i reported this, the teacher told me to tell them to stop… which he then punished me for doing, so I shut up because I learned correctly that the teacher didn’t care.)

    Finally, after about four months of this, sometimes being stabbed hard enough to draw blood, he lost his temper, stood up, and hit one of them over the head with his chair. He then threw his chair out the window and stormed out of the class and skipped the rest of the day of school.

    He was suspended. The kids who provoked it? Were moved away from him but had nothing else happen to them after months of harassment. They thought it was hilarious.

    So, yeah, that sort of stuff happens very often. And the schools often apply a band-aid solution. I presume because it’s easier to treat each incident in isolation rather than accepting that they all have a cumulative effect.

    • One time that I engaged in violence, my sister was poking me. Now, I don’t know how it feels to other people to be poked in the ribs, but I find it very painful. Here’s a list of things I find less painful than a “good natured” poke to the ribs: A freshly bruised tailbone, a second-degree MCL sprain, dislocating my thumb, breaking an ankle, spraining an ankle, spraining a wrist. Poking me in the ribs is on par in pain level with trying to use a joint that has inflammed and bruised cartilege or with a freshly broken nose or a bad migraine. It hurts. A lot.

      So, anyway, she was poking me, and I told her repeatedly to stop. She continued poking me and I appealed to my mother to make her stop. My mother refused and she continued poking me, so I tried to leave. My mother made me return so I could continue doing the dishes, and she kept poking me, so I threatened to hit her if she didn’t stop. She continued poking me, so I lashed out with a violent attack, punching her about the head and shoulders.

      … My mother grounded me. Even though I’d said, “Ow, that hurts.” and “Stop” with increasing volume for about twenty minutes, appealed to her for help, and when that didn’t work, announced that I would engage in violence if my sister did not stop and then made good on my threat. As far as I was concerned at the time, I was engaging in self defense to get someone that was sadistically causing me pain for their own amusement to stop.

      Yet, I was in the wrong, somehow. I still don’t get what I could have done differently – I did all of the things that people who love to assume that the person who lashed out is always 100% in the wrong 100% of the time say you should do: I said no, I appealed to an authority figure, I tried to leave, and finally, when I couldn’t take it anymore and all else had failed, I lashed out, because I couldn’t just sit there and take it while someone caused me serious pain.

      Yet, you ask my parents, and they’ll use that as an example of how “volatile” I was as a kid, as if I’d attacked my sister in an unprovoked manner and without any warning.

      • Right. Awful. And completely unfair. Irrationally unfair. This misunderstanding about perceived pain happens a lot, I think. People say things like “Oh, stop complaining, you aren’t really hurt.” “Why are you crying you barely scratched the surface?” “How can it hurt so much I don’t see any blood?” etc. What matters, the ONLY thing that matters is what someone is saying about their experience. If it hurts, they are saying it hurts, then it hurts, period.

        • With kids I work with, I acknowledge that it hurts and try to teach them the different between seriousness of hurt – a stubbed toe can hurt a lot and to be honest, as an adult I’ve ended up in tears over them a few times. But, generally, they’re not serious. So I go, “Yeah, that hurts, but it’s not something you need the hospital over. It stings, though, doesn’t it? Come with me and we’ll walk it off.”

          … Accomplishes the same goal (teach the kid the difference between serious pain and not-so-serious pain) without gaslighting the kid about their pain level.

          • This king of weighing “serious” versus “not-so-serious” pain works for general injuries, but there is one small complication to this:

            Certain autistic sensitivities can involve a kind of pain “synesthesia” associated with certain types of touch or sound (or possibly sight, although I have never experienced such) and one such sensitivity I had made it so if a (not very nice, at least in retrospect) teacher talked softly in my ear behind my back, as teachers are wont to do, the right side of my back would ache as though I had come down with a serious flu. In other words, if the teachers had simply walked by and smacked the back of my hand once with a ruler, they would have caused me less physical pain than they did by simply doing their quiet “corrections”. Of course, without a frame of reference, I thought everybody felt that way (yay, gaslighting :P).

    • It is so, so painful reading these accounts like the one you’ve just written here. And honestly thinking about you having to sit there while being stabbed in your back with a sharp metal object? It makes me want to both cry and scream at the same time. I hate that these stories are everywhere. I hate that so many have had things like this happen to them. I hate that this happened to you. I hate that this happened to the boy seated next to you.
      They are indeed so common, one doesn’t have to look hard to hear about them. Horrible.

    • When I was in 6th grade, the kid who sat next to me (who was the son of another teacher, and basically untouchable) hit me on the top of my head with his binders (on purpose) walking past me every morning. I simply said “Stop that!” him: “or what?” me: “You’ll regret it!”

      After the teacher was told repeatedly this was happening, by me and my parents, now for at least a month, my parents were like ‘the school isn’t doing anything? screw it, hit him back’. The next day, he did it again. I said “I warned you repeatedly, I warned the teacher repeatedly, now you’ll regret it.”. I was changing out of my snow boots, and so I simply grabbed it by the toe, jumped on him, and beat him repeatedly in the face with the heel. He was bleeding everywhere, and was sent to the hospital. (He turned out to just had a really bloody and bruised nose).

      The school called my parents and laid into them about the incident, threatening police intervention. My parents were like ‘we’ve been warning you repeatedly, my son asked for help repeatedly, you did NOTHING. I DARE you to call the police. I’ll be right down to talk to them too. I’d LOVE to see you defend yourself against this.’. I was walked back to class without incident. Needless to say, the next day the kid took a different path to reach his desk, by me. I simply said ‘good morning’ to him like nothing happened and got back to my day.

      • The common denominator with these sudden, supposedly “out of the blue” “unprovoked” violent explosions, for me and for most others that I’ve spoken with on the issue, is a pattern of ongoing harassment that was either ignored or, worse, enabled by the authority figures. When you have no non-violent options left and the authorities basically tell you that you’re on your own, it makes sense to explode.

        … and once you’ve gotten to that point of helpless rage once, it’s easier to get there again. And each time it happens, your trust in authority figures is eroded a bit more and a bit more until violence is your first resort rather than your last resort, because why bother with the other ways that everyone says should help? They don’t ever help, so there’s no point in delaying the inevitable.

        … at least, that’s what it was for me. Once the adults in my life started actually listening when I said, “This kid is hurting me, make them stop.” and actually doing something about it, my “violent behaviors” resolved themselves. I was only ever explosively violent because I couldn’t see any other way to get my own suffering to stop. I doubt I’m alone in this.

        • ischemgeek – right, and so what gets taught? To be wary of telling adults with the hope they will do anything about the situation, and that the only answer left is to defend oneself against violence with more violence in order to finally make it stop. And when that actually is the only thing that works, it is logical to do that sooner the next time, and the time after that to not even tell anyone, because what would be the point? And then how big of a leap is it to assume violent intent from the other person pretty quickly when you’ve experienced a history of this? Suddenly the only way to defend oneself is to preemptively be on the look out for this kind of bullying from others, even when every now and then you might apply this intent to someone who does not want to bully or hurt you, who might even mean well. But how could you possibly know this after years of this other, horribly malicious behavior being directed at you?
          This is the stuff that scars and causes far more damage in the beliefs it instills. Beliefs that are rooted in evidence from one’s past…

          • Yep. For example: I never report stuff stolen to the cops (even though I forget my wallet everywhere and so get it stolen a lot – this is why I don’t carry cash and why I have my bank’s and credit card company’s emergency numbers memorized)… because they’re authority figures and therefore untrustworthy beings to be feared and avoided. It took me 3 years to get comfortable being around my boss for the same reason.

      • Paul – horrible. All of it. Horrible. As I said to ischemgeek, I hate that this happened to you. I cannot imagine how awful it must have been. And it really exemplifies how inadequate adults can so often be in doing anything to actually make the situation better.

  4. I find many parents (even of NTs) seem to always assume malicious intent in their child’s actions. I really don’t think most kids are trying to purposely be little snots and Autistics even less so. It’s always important to get both sides of the story.

    • Yeah. It’s tough when so many respond to all of this reactively and yet the person with the “behavior” is thought to be intentional and not reactive to anything in their environment.

  5. Your first example seems like something of a perennial problem anytime there’s bullying in school–the victim gets in trouble for retaliating while the instigator may or may not be punished. Of the four times I really got in trouble in school, two of them were reacting to other people bugging me (at least for me, both times the other girl got in trouble too). Schools tend to suck at dealing with bullying situations–they were damn well aware I was having issues, but never did anything substantial about them. I think they really didn’t know what to do. So kids wind up mostly dealing with bullying through attempted avoidance, because they can’t do anything else and the schools either can’t or won’t help.

    • It all becomes so cyclical. The child avoids sitting near other kids and is told they’re being anti-social and then forced to sit with kids who are unkind and doing things that are provocative. The child then lashes out and they are told they’re being aggressive. It sets up a no-win situation for the child whose behavior is being charted.

  6. It’s surprising to me how immediately people conclude a behavior is done with willfull ill intent. Professionals on down make this erroneous assumption. When my child was 7 I think and was examined by the county psychologist, she had pegged my son as aggressive based on: when I offered him a pretzel he roughly pushed my hand away. (he has intense sensory issues and just seeing the pretzel was making him gag) and when he pulled the shades for the third time or so I used my “you really need to knock it off” voice. He came over and pulled my hair to pull me closer to his face. ( he does this for a kiss to make sure I know he’s sorry and that mom isn’t mad). I am glad she followed up with questions but now I have to worry they are setting a life-long record documenting his “aggression”.

    • It’s interesting that a child’s so called behaviors are seen as intentional, but only when malicious, and yet any verbal utterances that seem at all unusual are ignored and not considered to have the same intent. So we get to pick and choose what is intentional and what isn’t and only when it’s perceived as negative is it intentional…

  7. I am fortunate that some (but not all) of my son’s teachers seem to be getting this, as he is having many difficulties in kindergarten right now. Some of the school officials and special educators were incredulous at first that he never hits anyone of has other behavior problems at home, that these issues only occur at school. I’m not sure that they have discovered what all the triggers are for his outbursts yet, but I am certain that it is something unique to the school environment, perhaps sensory issues, that are at the root of it. He is very verbal, but almost never can articulate the sources of his distress or the reason he does things.

  8. Behaviors are really hard. My son is having a terrible, miserable time at school this year. He’d had the same, loving, grandmotherly teacher for 5 years, and then at the end of last year, she retired. The assistant from that class was moved to a different class. The entire classroom was changed, decorations and colorful stuff down, and now it’s a barely decorated, stark room. The desks were switched out for the type with the big cubicle partitions, and Jaymes’ seat was moved to a new location. All new staff. The teacher is a good teacher, and she’s getting decent work out of him, but she is not warm and cuddly- and he needs that bond like he had with the previous teacher. Since the beginning of the year, every day I get a note home saying he is cursing at the teachers, hitting or kicking other students, biting, hurting himself, rolling on the floor, damaging the classroom… And everyone wants to blame it on the medication. The truth is, Jaymes wakes up every morning begging me not to make him go to school. “Don’t want to get on bus, no school mommy.” He cries his way onto the bus. Sometimes he screams the whole way there. Sometimes when it’s time to come home, it takes 5 teachers to get him on the bus. When I drive him to school, it’s 100 times worse. It breaks my heart to see him so unhappy. School is unbearable for him right now. The other day I dropped him off, and he stabbed himself in the arm with a sharp pencil… Nasty puncture wound. I don’t know what to do for my poor boy. On one hand, the behaviors are unacceptable, he cannot be hurting himself or others and he needs to do the best he can to focus and learn at school… But on the other hand, there s something out there causing this. Be it another kid, the loss of his old teacher.. I don’t know what. Identifying the problem is so hard, because Jaymes, while verbal, has a very difficult time explaining anything beyond very basic wants and needs. I’m at a loss. Homeschooling is not an option. We had an IEP meeting, and they are bringing back the OT accommodations that they apparently took away without telling me. Maybe his fidget seat and his weighted lap pad will help. I’m praying for something to turn this around. He’s not being bad, he’s legitimately suffering, and I just don’t know why.

    • “He’s not being bad, he’s legitimately suffering, and I just don’t know why.”

      Oh how I hear you. That feeling of dread when an email comes or the “communication book” from school arrives and I must read the list of grievances all spoken of as “behaviors”. It is painful. Just incredibly painful. And yes, there is absolutely something causing the actions being described and yes, figuring out what the triggers are can seem impossible, especially for those of us who are not actually at the school when these things take place and we cannot rely on our child to tell us or even give their version of what’s going on.. it is just a terrible feeling. I don’t have any great ideas either. How to get others to understand that bandaids aren’t going to help. Not in the long run. We need more than bandaids… We need competent people who are able to take the time to really empathize and understand and try to get to what is causing some of these issues for our kids.

  9. I SO needed today to feel less alone in what my son/our family are going through right now regarding school…and while this conversation does not wholly solve our current dilemmas, I am glad to suddenly feel less alone on this journey right now! I had actually come to the site to revisit your wonderful posts about violence/aggression…but this is what I really needed to read.

    Academically, my nine-year-old is very bright, even gifted in some areas, but socially/behaviorally, we are rapidly reaching a disaster point. Because we did not feel public school was providing adequate small group learning supports (and that in itself is a long story), we opted to try a charter school specializing in ADHD/Asperger’s kids. We researched and felt in the end that surely–surely!–THIS would be a better fit.

    But it’s SUCH a struggle, and all these “behaviors” (and there are many, including aggression towards teachers and as of yesterday, towards other students) seem to leave staff trying new things every day and my son with more anxiety and poor responses as a result (the source behind the behaviors). I know that sensory issues and anxiety play huge roles in my son’s responses to situations (he struggles sometimes at home too…but not nearly to the same degree), but my husband and I are rapidly getting to the point where we don’t know WHAT to do…except maybe retreat from the world and homeschool because dealing with the pressures and anxiety of having him in a school environment where everything seems to be going wrong is just too much, too hard. Most of all, though, I know how hard all this is for my son, the toll it takes on his feelings about himself, the muted anger that I begin to see growing deep inside of him.

    • Yeah, I think that’s the thing that is most painful is knowing that the actions (aka “behaviors” I have come to really hate that word) are BECAUSE of things that cannot be articulated, but they’re there and that helpless feeling of seeing our kids in so much pain, suffering so obviously, coupled with the frustration of trying to educate an entire school staff if they’re even willing to listen or worse, having to battle them and feeling like you’re hitting a wall.

  10. Yep. It’s like trying to put a bandaid on it rather than looking into the source of the problem. I feel that it is so important to look at the root of the issue. Why is it happening? What is hard about it? What can we do to make it better or easier? I think a lot of it goes back to the two questions I ask when Nathan starts getting upset: Is he regulated? Does he have a way to communicate that I am understanding? If either of these questions can be answered “no” then I need to do some work on my end.

  11. Having a great parenting day myself and feeling very…hopeful (NOT always the case) but am excited to come across this and send the link to my dear friend whose son’s behavior is getting labeled as “threatening” – thank you so much for this beautiful and helpful post. I’m sure I will need to come back to it for my own purposes 😉
    Love

  12. Just so true. I’m not an “official” autistic, but the school has to go through that in the next month or so. I mean, it’s plain as day, what with my combination of auditory, motor control, and comprehension problems. Lucky me, I live in a small town with a not-so-harsh special-ed program, so no teachers bother me when I stim. And I also struggle to control myself physically, but no one minds if I stand up as a break. Trust me–sitting still hurts.

    Of course, since I’m good enough with speech to pass for normal, my having a bad cold and wanting to be quiet is not what my teachers expect. The right words just don’t come out. My frustration at the misunderstood message does lead to problems, that’s for sure.I’m much better at typing and singing, however. And echolalia is something that people think of as my words. How, you ask? I get my phrases from such obscure sources that they don’t realize I’m repeating something else. That’s the trick.

    My blog, a recent start, is at wordsofautism.blogspot.com . My most recent post, for that matter, is on echolalia.

    I must thank you for your blogging. Reading the stories presented here has helped me to realize that I’m not the barely-autistic that my parents thought a year ago. It’s just that I’ve hid it. ((I don’t hide it anymore.))

    • Arianna – “And echolalia is something that people think of as my words. How, you ask? I get my phrases from such obscure sources that they don’t realize I’m repeating something else. That’s the trick.” I am reading a terrific book right now about “gestalt learners” and how echolalia is a building block to generating language given the right supports and encouragement. It’s fascinating.
      I will go look at your blog, thank you for leaving a link to it!

  13. Well,I am now going to say to all of you awesome parents to do what I didn’t listen to my gut and do…if your child is communicating to you like this about going to school, listen. There is a reason. He or she is speaking to you in the only language they have now. The place they are going is not safe for some reason…find out. Walk in. Spend sometime. If the teacher says you can’t, you have your answer. I wish I had.my daughter will graduate this spring. My daughter is sitting next to me and just typed tell them their children are not lying when they act like that. She said to make sure your kids know you listen to them, no matter how they talk now.

    • Thank you Paige and Emma. I know how hard it is for you Paige, knowing what you know now. And thank you Emma for urging others to listen. You are both beacons and I”m following. Just want you both to know that. I hear you and because of both of you I have rephrased questions, asked difficult ones and as a result have a better understanding.

  14. I recently saw a scene from a Korean drama that is a great example for explaining this issue to outsiders. A lawyer is setting up his Powerpoint and can’t seem to figure out where to click. The judge keeps telling him where to click, but the lawyer does not listen and keeps getting it wrong. Finally after almost a minute of this, the judge loses his temper and starts yelling at him. The lawyer responds, “If you can be so angry after a minute of being ignored, imagine how angry she [his client] must be after a lifetime of being ignored.”

  15. All of us just want to be heard and understood and we act out when we’re not.

  16. I couldn’t agree more. I have gone time and again to schools to observe neurodivergent kids I teach in their classroom, to help with, so called ‘disruptive’ behaviour and I have always found that it was either triggered by another kid who was smart enough to hide from the teacher or by some kind of sensory overload. And I mean ALWAYS!
    Then the kid gets totally ‘demonised’ by teachers and students and anything goes wrong in the class could be blamed on him/her.

    • There is such a massive, fundamental misunderstanding about these so called “behaviors” it really is frightening. Thankfully more people are writing about their experiences of not being able to say or behave as their minds tell them or want them to. I am hoping their words will be read by more people and their experiences will be better understood.

  17. So well said! Thanks for this!

  18. Pingback: In the News – October 2013 | The PsychoJenic Archives

  19. Pingback: Why Meeting Needs Matters |

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