extinction burst

IMG_0922

{Image is a photo that I inadvertently took with my phone. The world looks very different when viewed through an alternate lens.}

Ed note: Last night, I shared a quote on Diary’s Facebook page about the importance of “indulging” Brooke’s scripts. Tomorrow, I will have the honor of sharing an autistic perspective on ABA therapy (and everything but the kitchen sink that falls under the ABA insurance code these days), with a guest poster explaining some of the controversy around it and offering practical help to parents in distinguishing between the good and the really, really not so good stuff out there.

In the meantime, I went into Diary’s drafts folder just now in search of something that I’d written over the summer on a completely unrelated topic. And what did I find there but this. I don’t know why I didn’t post it when I wrote it. Maybe I had a reason; maybe it was preempted by something eventful. Maybe it simply got lost in the shuffle.

Whatever happened then, here it is now. I have to believe there are no accidents.

 

On Saturday, I reposted something that I’d written last year. It was a post in which I’d done my best to imagine what Brooke’s first ten minutes of the school day felt like. If you’ve already read the post, I invite you to meet me after the jump, below. If not, I hope you’ll take a moment to read it for context.

 

Editor’s note:

My daughter didn’t write this.

I did.

It’s a guess. A guess as to what it feels like to be inside her head. A guess based on years upon years of watching her, listening to her and collecting and piecing together every clue she has offered, in whatever way she offered them.

You see, I spend a lot of time trying to understand my daughter’s experience from the inside out. Given that it’s fundamentally different from my own in many ways, I think it’s important. Because if I don’t, I will make faulty assumptions based on my own experience that simply won’t apply to or for her.

It’s not always easy. In fact, at times it feels damned near impossible. But over time, and especially in recent years as both her ability to speak my language and my ability to speak hers have improved, it’s gotten easier.

But still, it’s a guess.

I don’t think that my daughter thinks in words. I might be wrong, of course, but I imagine that her internal world is dominated by thoughts and feelings themselves, not the words that we, out here, insist on using to describe them. I look forward to the day when she can tell me if I’ve got it right or if I’m way off base. But until then, I will keep trying.

Because it matters.

*

What do you feel in the room? On your skin? Is there a breeze? Is that a tag in my pants that keeps rubbing up against the skin just above my hip? Or is it a seam? What the heck is that? Maybe if I shift a little, or try to pull my t-shirt down between my skin and the material? If I stay ever-so-still maybe it won’t rub like that, keep irritating my skin. I can’t make it stop. There’s got to be a way to make it stop.

“Calm body, Brooke, okay?”

Calm body. I’m trying, but can’t you see this tag or seam or something, oh my God it is SO annoying. I’m trying to sit still. I’m trying.

Do you smell that? Is it the teacher’s perfume? The air is thick with it, isn’t it? It’s like a fog. Aren’t you choking on that sweet, syrupy smell of vanilla and flowers? I can’t breathe.

The lights are buzzing again. Why must lights make noise? It sounds like a train. Or no, a bee. A swarm of bees. Bees make me itch. I’m afraid of bees.

“Brooke, hands away from your ears.”

Okay, okay, but the bees. I need to protect myself from the bees.

The teacher is talking. There are so many words and they’re coming so fast. Are they dialogue words or monologue words? When the words stop coming will she be looking for a response to them? Will I have to have figured out what all the words were and then what they meant and then what she wants me to say or do I just have to listen?

Maybe I can pull the tag out. Or smooth the seam over with a piece of tape. Maybe I could get a tissue from the bathroom. But the hallways –  the noise of the lights in the hallways is worse. And the echo. All those footsteps layered on top of each other and the groaning scratch of metal on metal as the locker doors open and close and open and close and the talking and the faces, all those faces, too many faces, and the eyes, searching, and the waving and the laughing and the bodies coming at me in different directions and I’m supposed to know which side to walk on and that kid waving his hand — is it going from side to side or back and forth because if it’s side to side then I’m supposed to wave back but if it’s back and forth then I’m supposed to go to him because one means hello and the other means come here and it’s so hard to tell which is which and no, just no. The bathroom will wait.

“Full body listening, Brooke.”

I hear the words, off in the distance. They register somewhere, just slightly louder than the buzzing of the lights but not as loud as the boy sneezing in the next classroom or the girl shuffling her papers or the syrupy sweet perfume or the tag in my pants or the teacher, still tossing her words into the air. They’re piling up on top of each other now – wait! wait! Please just wait. I need time to sort them out, to make sense of the letters and the sounds and the words and the sentences and the stuff that she’s not saying that we’re supposed to understand that she means anyway and I’m listening, but I’m not looking in the right direction because it hurts to look because there’s just too much input and it’s coming from everywhere and if I have to look too it might just be that one thing more than I can possibly contain because there is so much emotion pouring from her face but I hear it again, “full body listening, Brooke,” and I know that I have to turn my body and train my eyes to look without seeing because I have to make them see that I’m listening but I can’t take it all in because it’s too much.

I don’t get why people don’t seem to understand that my eyes aren’t my ears – they’re grown-ups, shouldn’t they know that? And they don’t seem to get that looking doesn’t mean listening and listening can’t happen while looking because the emotions are too big and there’s the tag and the buzzing and the sneeze and the papers and the words — the endless, endless words because people seem to need the words and there’s nowhere to hide from people and their words and now the teacher is reading and I hear the word, “Max,” and I need to tell someone that Max is a bunny. The bunny from Max and Ruby. I need to say, “What does Max say?” and I need them to make the bunny noise that Max says and then I need them to be Ruby and tell me what Ruby says when she says, “Shh, Max,” because this is what you do when someone says, “Max,” because Max is a bunny from Max and Ruby. Do you watch Max and Ruby? Do you know that cartoon?

“No scripting right now, Brooke.”

No, no scripting now. We can’t do that now. Because now is sitting still and listening and looking like we’re listening time and the tag and the seam and the buzz of the lights and the words that keep piling up and the hallway outside the door and what if there’s a fire drill today? Oh no. What if there’s a fire drill today?

Can someone, anyone, please tell me that there won’t be a fire drill today?  I say it out loud, “The firemen won’t be here today,” and you smile and bob your head up and down in that thing that people do to mean yes but you don’t repeat it. I need someone to repeat it. I didn’t say it to say it I said it so that someone would say it back to me, reassure me, I need to know that there won’t be a fire drill today.

“Could you tell me the firemen won’t come today?”

“Not right now, Brooke.”

Okay not now, but what about later? Will there be a fire drill later? Please tell me that there won’t be a fire drill later. That wasn’t what you meant, but I don’t know that wasn’t what you meant. Words are unreliable. I don’t trust them. I can’t. I need the exact ones that I asked you for. Please. I just need you to say this one thing – “The firemen won’t be here today.”

There’s a math worksheet on my desk.

I’m supposed to do something with it.

I shriek.

That’s a “behavior” that gets ignored.

I find words because they trust words.

“I need a break,” I say.

“Not yet, Brooke. Let’s do some math first and then we can take a break.”

“I need a drink of water,” I say.

It is marked in the book. “Requested a break — escape // avoidance.”

The halls will be quieter now.

“I have to go the bathroom,” I say.

School started ten minutes ago.

There’s math to do.

I need a break.

This is why I don’t insist (or let others insist) on eye contact. This is why I’ve been known to “indulge” (and ask others to “indulge”) her scripts. This is why when she asks for reassurance, I offer it. This is why she has the help that she has and gets the breaks that she needs.

This is why I bristle at anyone who tries to define my daughter as the sum of her behavior under stress.

This is what I try to remember, because this, I think, is what she lives … every single day.

It’s ten minutes in.

*

Further Reading:

Judy Endow on Eye Contact

Amanda Baggs on Language

Julia Bascom on Quiet Hands

I was shocked, humbled and awed by how many autistic readers identified with the post. One in particular, my friend, Julia (who wrote Quiet Hands, above) said, “I know that someday, Brooke will be able to tell you what it’s like for her. But I’m glad you wrote this, because this? Is what it’s like for me.” To which I responded, “And part of why I know is because you’ve given me the gift of sharing that.”

You see, my guess at what my daughter’s inner life looks like is a very, very educated guess. It is informed not only by my diligent observation of her, but by the experiences of so many autistic people, who, like Julia, have so generously shared their experiences, their thought processes, their inner worlds, themselves. And for that, among so many other things, I am deeply in their debt.

Another reader left a comment on that post that started what I think is an extremely important dialogue. I would like to share it with you here.

I read you mostly every day, although I almost never comment on your posts. I really like the way how you try to understand your child and I love reading you. I also get that children with autism often get sensory overload .

If you let me, I will give you my opinion. As an ABA therapist, I really believe in the power of this therapy because I have seen it with my own eyes.The reason why I believe eye contact is so important is this: it does help with listening and mostly important, it helps with focusing while ignoring any extra stimuli around. The reason why we teach to ignore and we desensitize any overwhelming stimuli, is precisely so they don’t have that overwhelming effect (you don’t want a child having a meltdown because of sensory overload in the middle of a real fire). 

From my perspective (and I apologize if I don’t agree with you on this), “Indulging scrips”could mean saying it is okay to get distracted and to think about “those things” instead of doing math, it could mean it is okay to worry because I will let you escape your math work and I will reassure you every single time you get worry about anything, even the smallest thing (if reasurance is a reinforcer and is provided everytime worry occurs, or if a break is given everytime you have to focus or stay on task…guess which behaviors are been reinforced?) instead of teaching you it is okay, you dont have to be afraid or worry about that, instead of teaching we work fist and then we.. (escape)
.
It could be that sensory overload is what she lives… every single day, but it does not have to be like that if desensitation is included as part of her program (she can be taught to tolerate until it bothers no more, until reaching a point where you dont even notice is there anymore).

Peace 

Although I responded on Facebook, I was compelled to bring this here as well as it raises so many incredibly important issues. I’ll start with the comments that I wrote:

Of course you don’t have to agree with me and I appreciate your sharing your view. I would ask you to follow the links at the end of the post to the three posts written by autistic people about their experience and to look for the myriad others out there who do the same. Everything that (I’ve ever seen that) autistic people have told us about how eye contact feels for them and the attention and energy that it demands runs contrary to the idea that focusing on eyes shuts down distraction, but rather that focusing on eyes IS a major distraction.

Also, on the “reinforcement of the worry about even the smallest thing” – I’d ask you to think critically (and a little more deeply) about that sentence. Firstly, what may be “small” to you, may truly be anything but to a child. Brooke is TERRIFIED of fire drills. So to ask if there’s going to be a fire drill that day? Not a “small” worry.

As for the process of reinforcing the behavior – I think we need to be very, very clear about the difference between behavior and inner experience. The behavior here is “asking for reassurance” and the worry itself is the inner experience. Extinguishing the behavior (the asking for reassurance) does nothing to extinguish the underlying fear that caused it. 

This is precisely my issue with this particular kind of behavioral approach (and I don’t mean ABA as a whole, I mean ABA practiced this way). Often (not always, but often) it veers into this territory – where the behavior (outer expression) is all that matters and we think that once the behavior is gone, the reason / motivation for it must have magically disappeared with it.

This approach completely ignores the reality of the child’s inner life.

Now, perhaps there’s a better way for her to express what she’s feeling or to get the reassurance that she needs without having to ask for it during class. I have NO problem whatsoever in using a behavioral approach to help her find and use that better method of communicating her needs.

But extinguishing the behavior isn’t doing that. It is pretending that if we simply teach her to stop asking for reassurance that we’ve taught her to stop needing it. And we haven’t. By ignoring her until she’s “extinguished the behavior” without giving her an alternative method of communication, what we’ve taught her is that we don’t really care how she feels – just how she acts.

Lastly, she has had a very extensive sensory diet and OT to help with desensitization since preschool. These are tools that can help mitigate the overload, and do greatly, but they don’t make her sensory experience go away, they help her manage it.

And then my friend Emma responded. And, as usual, she took it to a whole other level of, “Oh my God,” because, well, that’s what she does. This was what she wrote:

While I understand your professional perspective, I have a lot of disagreements with the behavioral and neurological assumptions that go into ABA “desensitization” and “reinforcement” training. 

Submitting children to supposed sensory “desensitization” training only makes sense if the you assume that said child possesses typical sensory desensitization and prioritization mechanisms, and capabilities. The reason typical people are rarely in need of such therapies is because their brains master the prioritization of sensory information at a very early age, and are able to prioritize sensory information in ways that fall within a supposed “norm.” The entire reason autistic (and other disabled) people do not develop typical sensory reactions and filtering as we develop is because our desensitizing mechanisms, and ways of prioritizing information are DIFFERENT than those of typical people. It makes no sense to assume that ABA will miraculously transform autistic children’s ability to ignore and process information. Autistic kids have, by definition, endured years of (often very frequent, intense) sensory stimulation without any signs that typical desensitization or counter-reinforcement processes are taking place.

In short, I don’t know why ABA therapists assume that they can make autistic people’s behavioral and sensory conditioning responses spontaneously start working typically. If my brain was the kind of brain that went through typical reinforcement and desensitization processes, I wouldn’t be a 22-year-old with serious sensory issues. If those parts of my brain chemistry worked like normal, I’d be a normal person. But they didn’t, and they don’t. I have sensory processing difficulties because my brain does not and cannot be made to filter and prioritize information in a “normal” way, but I live in a world built for people whose brains can do things in the “normal” way. You can’t fix my “abnormality” using tools that assume I function just like everybody else does.

I know, right?

I don’t doubt the commenter for a moment when she says, “As an ABA therapist, I really believe in the power of this therapy because I have seen it with my own eyes.” What I do doubt after reading her comment is that she is looking beyond a neurotypical view of what behavior means in relation to inner experience.

I can train Brooke to stop asking about the firemen by routinely and consistently ignoring her when she does. I can teach her to stop scripting during class by refusing to engage her in a script until a certain time. But neither of those things stops her from worrying about whether or not they’ll come, or making associations to scripts that she feels compelled to think through to their end and for which she will continue to, in one way or the other, seek closure. So while she appears to be successful because by no longer asking about the firemen or attempting to engage us in the script she is giving the outward appearance of no longer being worried about them and no longer perseverating on Max, I can assure you, neither of those two things have occurred. (That was a terrible sentence. I’ll give you a minute to recover.)

While we might have seen with our own eyes this incredible success story, here’s the real story.

Brooke is coming home at night and tearing at her skin, pulling her clothing threadbare and bursting into tears at seemingly random times because anxiety doesn’t go away when we stop expressing it in one particular way. She is still sitting in class wondering what is expected of her and trying desperately to parse the words that are falling on top of one another in messy, chaotic piles and trying, trying, trying to catch up and getting frustrated and angry and feeling like she “must just be stupid” because her brain doesn’t shut off the script because we refuse to engage it.

The outward appearance of success is based on a neurotypical model of behavior and has absolutely no bearing whatsoever on the inner well-being (or inner havoc) of the child. 

I reiterate that there may very well be better, more appropriate, less disruptive ways for Brooke to express her concern or her need to script. And I have no problem whatsoever with presenting those to her and with using behavioral methodology to encourage her to use them. And again, I’m a proponent of the ABC model when seeking to understand the motivation behind behavior, or, to put in another way, to see what it is that Brooke is using the behavior to communicate.

But when we measure success solely by outward appearance, and we judge that outward appearance based upon an NT model of what behavior means, I believe we’re way off the mark. And as the mama who holds her girl as she tears at her skin and pulls at her clothing and cries before bed, I’m sticking to my guns. Her long-term emotional well-being means a lot more to me than any short-term NT version of success.

 

25 thoughts on “extinction burst

  1. Thank you.. This is such a great post. As an individual with Autism, I feel like sometimes my world is exactly what you described in the what you think Brooke’s world is like part of this post. Yet sometimes, well lots of times throughout my life actually, people have labeled communication attempts as attention seeking behavior, manipulative etc. When in reality, behavior is communication! Yes, the “behavior” may have been attention seeking, but if you felt uncomfortable in your body and wanted to interact but didn’t always quite know how I bet you’d have some attention seeking “behaviors” too. I know some teachers and school staff use the ignoring method, but that doesn’t work well with me, since if I’m trying hard to communicate, in the only way I know how at the time, “using behaviors or scripts, or being repetitive” and you are ignoring me, you aren’t “hearing” what I have to say and comprehending it.
    I remember a time when people didn’t understand the meltdown I was having, which in all honesty was a self-inflicted wound they caused themselves by not responded to my communication attempts in the correct/helpful way. I was starting to calm down, I wanted one last break, as we walked by the break room, they told me no, the break room was closed. All my effort I used to get the words I need a break please out, were useless, the words didn’t work for them, they didn’t want to take the extra time late at night for me to take a break. As a result of my attempt for a break being denied, the meltdown I had almost recovered from, began to escalate all over again.
    Please, please, please listen to communication attempts, in whatever form they may be.

  2. I’m an adult who is coming late to the party as it were–learning, for the first time, that I may be on the spectrum, and fighting to get services, and mulling over whether an official diagnosis is going to be worth all the stress, and time and money.

    I worked with Autistic kids for 6 years when I was in my twenties. This was in a public school setting where ABA was all the rage at the time. I remember struggling so much with the methods being used, especially with shutting down the scripting. I specifically remember saying to a fellow colleague, “But why are we shutting that down, when that is the primary way that they are communicating with us. Listen to what he/she is saying. Sure it’s a script from their favorite cartoon, but the line they are choosing to say in this moment is communicating how they are feeling, or what they need or want.”

    And you know why that made sense to me, because it was the only way I could make sense of my own emotions, my struggle to process social situations, and to communicate effectively. I was always relating social situations to my favorite television show at the time. I learned how to form friendships and be in a romantic relationship, by watching the characters in the show and doing what they did. I understood my internal emotional responses better if I could somehow mentally and emotionally clothe myself in my favorite character (which is still true, just a different special interest now). It was the only way I could make my world make sense, and I was CONSTANTLY being shut down by those around me.

    It broke my heart to see that we were being asked to do the exact same thing to the kids we worked with. It seemed wrong. It seemed like we were invalidating their attempts to understand themselves. It seemed like we were telling them that how they were processing and understanding the world around them was wrong. If felt like we were telling them that THEY were wrong. It felt like we were snuffing out their light. I had enough eventually, and I moved on to a different career path, because I didn’t have the energy or influence to try and change things from the inside at the time.

    But I just wanted to tell you how much this post meant to me. I literally cried most of the way through it, especially in relation to your guess at what was going on in Brooke’s head (which is exactly what my head is like all the time, just at a lesser intensity) as well as your response and your friend’s response to the comment about ABA. Spot on!

    Thank-you so much for your blog. I found it through an old acquaintance a couple of months ago, and it has been such an encouragement. I look forward to reading your posts every day.

  3. “…anxiety doesn’t go away when we stop expressing it in one particular way.”

    Thank you for this and the whole post, really. I am an otherwise neurotypical person diagnosed with PTSD. I worked as an ABA therapist for a number of years before my diagnosis. I described my “episodes” to my doctor as “how it must feel to be autistic.” Noises become too loud, my clothes too tight, and I want to go running from the room. The shoe is on the other foot, so to speak, and during these times I’m not able to “use my words to ask for a break.” I sit stunned, wringing my hands and praying for the episode to pass by without utterly destroying me. To anyone else, I just seem quiet as I sit and attempt to cope because I know that is what society expects of me.

    After an episode the other day, I bawled my eyes out for the number of kids whose behaviors I ignored over the years. If what I experience is a sliver of what they regularly live with…I hope they find it in their hearts to forgive me for not doing a better job of caring for them. And rest assured, my perspective is different going forward.

  4. I don’t have the words to express how much I needed to hear this. I may not always understand what is happening in my kids’ brains or why they are engaging in a certain behavior, but I sure know that I cannot expect their brains to stop processing something or their bodies to stop feeling just because it’s not the most convenient moment for me. This can be especially heartbreaking when I feel that nothing I’m doing is helping them and I feel somwhat paralysed, but I can only begin to imagine what it must be like for them. Thank you for sharing this and reinforcing my determination never to let someone else dictate what their experience should be.

  5. Let’s put it this way:

    I was trained not to cover my ears, to ignore loud and painful noises. My friend was provided headphones.

    My friend wears her headphones all the time now. I have headphones, but I can rarely bring myself to use them. When an ambulance goes by, she flinches. When an ambulance goes by, I can look completely placid.

    My friend has never injured her ears.

    I’ve punctured both of my eardrums, multiple times.

    But at least I don’t look different????????

    • Julia
      I am so sorry this happened to you. Thank you for sharing to help remind us of what it feels like and the hurt that can be done.

  6. Wow this is so powerful on many levels. As is so often the case it came just when I needed it most. So many points ring true.
    Emma- that is so well said and thank you for sharing…
    Just remarkable what is said here.

  7. Hear, hear! I was a kid with sensory issues. A tag felt like someone was gently pulling a razorblade across my skin. I’d like to see anyone ignore that! I still have to cut tags out of my clothes. My parents got angry at my irritations; am grateful I understand, and cut the tags out of the clothes of one of my kids who is the same. And our noses are turned “up”; I can smell smoke (cigarettes are the WORST) from three times the distance you can – so I get my kid can’t enter a Starbucks, because the coffee smell is the same for him. It isn’t that we are less tolerant than others; the sensory volume is just turned way, way up. If we could do that to you, you couldn’t ignore it either! And folks who wear too much perfume – ugh. We aren’t less tolerant. We are experiencing the input at a very different volume. IF you want kids with sensory issues to focus, deal with the sensory irritations.

    • WOW…this is so important. We are living in an ever increasing sensory overloaded world that can just be too much. What others see as an enjoyable experience like shopping can be just be too much for adults and children alike who interpret the world differently. I am one of them ……Why does it have to find like being at a rock/pop concert when one goes to the store or for a relaxing cup of coffee.
      School is a very different place now with white/smart boards, increasing academic demands at younger ages…..
      It just becomes too much…..Thank you for sharing.

  8. I am 73 years old and have lived Brooke’s first 10 minutes of school so many times, I can no longer count. When I was in school, autism was not a diagnosis yet. We were just odd or special ed or whatever those in authority could think of. We were shunted off to the side to sit for hours and not interrupt. For unknown reasons and/or activities, I fought and fought my way through life to now being a retired business owner, a Ph.D in philosophy who is (now) a content, non struggling (except occasionally) odd duck. I live in the woods with my partner of donkey’s years as we wait until we can marry. I am a autodidact polymath as well. In some ways, it’s much fun living life that way. Gotta admit tho, that going from planting seeds to repairing the car to teaching at a local university all in the same day can require some rapid hat changes. So, Brooke, soldier on. You will be exactly what you want to be and be a monumental success at being Brooke.

    • I hope it’s okay to say this and that it in no way comes off as disrespectful, as I intend the opposite.

      I kinda love you.

      Thank you.

  9. I honestly do not know where i would be without your blog. My about to turn 6 year old son was diagnosed only 7 months ago and i truly would be light years away from understanding him as well as i feel i do if not for your posts. Yes he is in a wonderful small classroom in his local primary school which has a very calming sensory environment, yes he receives OT and play therapy (not ABA), yes we are affiliated with a local autism center which has parent support groups and seminars. They all pale in comparison to what you share here because you give me the ability to truly understand and help my boy. What a GIFT you are Jess! Thank you to you and thank you to Brooke!

  10. Wow.
    I think I have atypical desensitisation mechanisms, and the sounds that are the most stressful to me are the ones I hear most often. I’ve experienced years of those sounds interfering with my brain when I couldn’t get away from them, because being bothered by those sounds is not considered normal. So now my brain associates those sounds with the anxiety of being unable to get away.
    I was extremely anxious when I was a child, but I wasn’t diagnosed as being on the spectrum. I had some kind of sticker chart therapy, which sorted out my problem behaviours, but I ended up with severe anxiety and depression, so I don’t think you can say this therapy worked for me.

  11. So poignant and painful to read about our little girl. But you’ve done an incredible job as a family along with your community to diminish her difficulties.

    Love you,
    Mom

  12. There is also the fact that what can seem like densitization in the short term, even internally to some extent, can completely collapse in the long term and leave someone more disabled than if they’d just treated the hypersensitivity as a valid, real thing that can be mitigated or worked around. Or barring that, can cause all kinds of illness and pain from sublimated stress, or hair-trigger meltdowns from holding it all at bay until a straw-that-broke-the-camel’s-back situation.

  13. (And also that desensitization just won’t work for probably most autistic kids, and may even make sensitivity worse. The more I’m stressed or overloaded in a single day, the more and more and more painful my hearing gets, not less.)

    (And I cannot BELIEVE how wrong I spelled desensitization in my last comment.)

  14. Wow!! I so needed this and want to thank you for it. My son is on the spectrum and will often repeat questions to his ABA therapists. One therapist will answer him each time and the session goes very smoothly. the other therapist ignores him or tries to redirect by saying “it’s okay”. I got frustrated and said “just answer him!!!’ my son needs reassurance and sometimes perseverating is a form of self soothing. I don’t like the ignoring/redirecting. It causes him to sob and then he begins to cry uncontrollably; he even tried answering his questions/doing the lesson all in tears and distress. I had to cut it short; this was completely unnecessary. Kids on the spectrum can have echolalia; it’s how they communicate. And if we answer them, we are giving them a reassurance they need. I emailed my son’s ABA department head today and she wants to discuss it. I simply told her I will not tolerate my son going through distress just because they don’t want to reassure him through the lesson. He does very well when the other aide answers him. Your article really opened my eyes.

  15. My 25-year old daughter sent me a link to this article today. For almost nine months now, she has been living on her own, renting a basement apartment in town and working 30 hours/week in an office with her dad. I tell her I’m proud of her for being responsible–paying her bills, fixing her own meals, doing her laundry and keeping the apartment clean–and she cringes. Those are all an “outward appearance” that looks successful because it fits our “NT model of what behavior means.” But inside, she tells me she is dying. And her private behaviors reflect that agony. And I really don’t know how to help her.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s