Tuesday, October 30, 2012

Sensory and Executive Function Barriers Are as Real as Concrete

Hi, I don't know if this is the right place to ask a new question, but it was the only comment box I found. Thank you so much for being willing to share your experience and knowledge! My question is very different from the previous one. My son, just turned 16, was dx'd "Asperger's" just over 3 years ago when hospitalized for depression and escalating behavior. (He was always labelled "gifted" and "ADHD", and in mainstream public school, with gradually worsening social experiences, compliance, and acting out behavior.) After the ASD diagnosis, things started improving as we learned what his needs were, but since he started high school he is gradually getting worse - school refusal, putting his head down on the desk, decreased cooperation at home, increased stimming and meltdowns (I have a fresh hole in my wall). At a recent IEP meeting, he told the 18 adults at the table that he'd done better in the one ESE class he'd been in (learning strategies), because it was "smaller, quieter and more individualized." The IEP staffing specialist told him flatly that this was impossible for them to provide him. They produced a behavior plan requiring a certain amount of work in order for him to have his full time at lunch with his friends. I asked what they would do to meet his sensory needs, and they looked at me like I was crazy. I mentioned the quiet office with the upholstered chair that he used to be able to go to sometimes in middle school, and they said I was trying to move him backwards. They also said that his behavior was more defiance than whatever else I'm trying to think it might be (despondency, perhaps?)

I kind of had my own meltdown at the meeting and we rescheduled the meeting to finish up next week. Predictably, my son is now on strike and has done even less work in school. I was wishing so hard for an autistic adult to ask for advice, and here you are! I know you don't know my son, but can you tell me anything you are pretty sure I should ask for at the meeting? We have accommodations of less handwriting and note taking, teachers email me daily to help me keep up with his assignments, and he has an extra day to turn work in if needed.

Sorry this is so long, and thanks for listening!


Good questions and familiar to me in my life, Carol. When is the meeting?

The next meeting date hasn't been finalized yet, but the deadline is Nov. 3. 

Dear Carol, 

I will definitely write back in plenty of time so you will feel maximally ready for the meeting. Also, I'll talk to my mom (Hi Mom, I know you are already reading this!) and see if she also has any extra additional advice to add for what you should say that she remembers from this time in our lives.As a preview, they don't really have the legal right to ignore you and act like you are crazy and all of that. As his parent you are someone they need to really be listening to and taking notes and following your lead. This is actually the way the laws are set up, and don't let their attitudes fool you. I am very sorry these particular ones are copping an attitude, but I am happy to report that truth that when you go back into that meeting you can go in there with the new knowledge that you and your son together really have the right to OWN it. And if you are on the same page you can do a double-team SUPER OWN.OK, I will write more soon, but think about that and for now, talk to him and ask him what would be his super dream outcome if I am right about you and him OWNING the next meeting, and see what you can come up with. Make a list. This list is going to be realer than you think. 

Best, Ib 

Thank you! He and I will have a confab. I think that part of the problem is that he is so smart, and often contributes good comments in class, so no one believes that when he puts his head down he isn't just being lazy. This is complicated by the fact that like most teens, he CAN be lazy. They also have never qualified him for ESE under the autism label, but rather under ADHD....their evaluations didn't reveal autism as having an educational impact. And, regardless of label, they observe that sometimes he can perform, so they seem to expect that he will always do so. He is also depressed and recently started therapy, and is on meds (which I hate) because his meltdowns were getting scary...I truly believe that if schol were less sressful he wouldn't need so much medicating. I'd homeschool him, but I can't quit work. 

The next meeting is set for Nov. first. So far all our requests are simple, like having one day a week to turn in all work to one person (executive functioning being a big issue), and accessing any online assignments at school, to reduce the number of modalities he has to remember to use at home. Thanks again for your generous spirit. And may I add, I've been reading your older posts and I love love love your writing! 

Dear Carol,
First off, thanks so much for that compliment :)  I am blushing :) :) :).  I am what they call a "reluctant writer," and your encouragement means sooooo much to me. So I talked to my Mom, and just as I suspected, you are doing a bang-up job.  Those were her exact words.  She says hang in there.  Your story made her laugh with bittersweet recognition because that is so much like hers and my teenager story.  Times ahead may be a bit rough (she said to add "er, say 'very rough'") but you are doing everything right, and I was let's just say a little on the difficult side at this age, and I am not going to let Mom add anything here in case it is more dramatic than that, but suffice it to say check out how I am doing now if you are in the mood for some Happy Hope, Marty McFly style.  This is not to be confused with myself bragging in front of any naysayer high school teachers and administration from the past who may or may not be reading this and were misinformed back in the day and not helpful and tried to ignore my parents and act like they were crazy, if ever there were any such people, which if there were, I'm sure they are not related or bearing any resemblance to anyone actually alive or living they may resemble, but rather are embodied by actors, and not to be copied and played on your DVD for financial gain or otherwise without express written permission of the FBI or MGM.  Disclaimer accomplished.  

OK so: I will tell you why you are doing everything right from both of our perspectives, and give you a little more information about your rights and some hopefully helpful analogies you can use to get people you are talking to, to be able to understand things better in real life. 

When I was extremely similar to your kid, the protections under the law did not extend to situations like ours, because it was such a long time ago and people like us were not so famous that people knew the names and listed them under the IDEA Categories and so forth.  ;).  You have that advantage now and I am going to help you use it.  When you have rights, by golly, work them. 

But before I do that I want to give you a major cyber fist bump of another thing that makes you awesome.  You mention that your son CAN be lazy.  The reason this is so awesome to me is that it shows how much you totally see him as a complete person.  Not he IS lazy, that or a no-hoper and can't do one darn thing of his own ever because he is a giant walking disability of tragic proportions, and also not that he is a super angel of otherworldly inspiration, bathed in the blue light of the mysterious puzzle piece of our dreamy-eyed kind.  He's a kid, your son, you get him.  And I really, really love that.  You do not dehumanize him in any direction.  And though he probably treats you a little on the heinous-rude-not-thoughtful side sometimes, because he is a teenager and that is what teenagers may have a tendency to do, I just want to report to you from the future that he will notice that you have not dehumanized him, he is likely secretly noticing now, unbeknownst to either of you, and he will remember, and it is making an important difference in the way he sees himself and what he can become.  Just hold that knowledge in your head and in your heart because it is going to come in handy in time to come. 

Just a break for station identification.  I really love the people who write in to this blog.  You folks make my day.  I wonder if there is a secret subtitle that I'd forgotten having put on there that says something like Blog for Awesome People to Ask Questions.  OK, back to your regularly scheduled programming. 

Autism has an educational impact.  Sensory issues have an educational impact.  Executive function barriers are barriers.  You are right about all that. 

Sometimes well-meaning people who think in a very linear way about "progress" in learning do not know these things, and you can help them, because your ideas are right on the money.  I am going to speak from analogy about what your story sounded like to me, using substitution of precisely related concepts, and you can tell people this, because it might help them see what we are up against here.  I will not go totally echolalic, but will get very very close, only just make it shorter and stick to the most salient ultra shocking part.  Here goes: 

Analogy Carolmom: My son, who uses a wheelchair for all locomotion, just started in high school, and has been having severe attendance issues.  Middle school was a lot better once they became ADA compliant and installed the right ramps and all of that.  He just told the 18 adults at the IEP meeting that classes in middle school were easier for him to attend as they were on the first floor instead of up two flights of stairs and thus it was "possible to get into the room".  When I as his mother suggested perhaps they could fix the elevator, if the first floor was not an option, they acted like I was crazy and flatly said all of that was impossible and I was trying to move him backwards.  They say he is defiant.  He never attends class, and for some reason seems to have given up, even at home (perhaps become despondent?).  What can I do? 

Me: They said what the whattin' what?!? 

Sensory and executive function barriers to learning are barriers to learning, and people do not have them on purpose in order to be defiant.  It is not fun to have them.  The reason we have special educational protections under the IDEA is so that teams can get together and provide accommodations and modifications to remove barriers to learning and allow students to access the curriculum.  If the barrier is physical, accommodations will address that.  Neurological barriers are sort of physical, by the way.  Brain scientists can locate a lot of that stuff.  My friend Judy Willis, MD, who does not focus on autism but is one of the most knowledgeable and fascinating people you will ever meet, is both a neurologist and a teacher.  Check out her studies and see what all they can know.  For one thing, separate issue, but related, you can learn and retain a lot more when you are pairing it with a positive affect instead of living out a nightmare situation.  I learned that from Judy (we were in the same writer's group at SCWriP which is part of the National Writing Project and extremely cool). 

Here is another important aspect I noticed about your story, Carol.  Your son is already an excellent self-advocate.  However, he was, as you were, blatantly ignored by a giant room full of people.  This is liable to contribute to despondency.  I still hate it when it happens to me, and have to fight against the idea that it is not worth it.  There are still ableists and jackwagons in academia, believe it or not, even in my field.  Of course I am sure any resemblance between them and anyone living or dead is entirely coincidental and the FBI, etc.... But he and you should continue speaking the truth, because you are right about it.  And it IS worth it.  It is.  Tell him I told you.  It gets better when you get older.  It doesn't get gone, but it gets better.  You get more powerful and can sort of make people listen more, more of the time.  And you can help make people listen to others.  It is worth it. 

Autism does have an effect on academic work, particularly because of sensory and executive functioning barriers.  Yes it does.  But not in all cases, and not all the time, and not if it is well-managed and provided for with accommodations and modifications allowing access to the curriculum, as ramps and elevators do with wheelchairs.  When quiet spaces and safe zones and plans B and executive functioning supports and simplification scaffolds are not provided.... well, here is something that happened to me just this morning.  They are supposed to tell me ahead of time if there is going to be a fire drill during class or office hours, so I can adjust (dull) my senses in anticipation (this falls under a "Plan B" because there will be fire drills no matter what, but I do have the ability to create temporary sensory dullness in myself with sufficient forewarning.  Many of us do).  Because of staff changes, this warning unfortunately didn't happen at all, so giant riotous unexpected piercing intolerable mind-ruining klaxons went off right in the middle of what was previously a math pedagogy class, with me surprised at full supersensitive ultrahearing.  Gack. 

The good news is, this was a class full of people who want to be special educators, and several of them have kids on the spectrum, so they got to see a sensory meltdown in situ naturally provided by providence, and see what they could do to best help out in such a scenario.  They aced it, I am happy to say.  Next week we can have a debrief about it, etc.  But, I will just let you guess whether I was able to provide pearls of wisdom in a calm, engaging tone of confidence and linguistic command right after that happened... 

So, to make a long story short, you are asking for very good things in the realm of executive functioning.  But you and he also have every right to ask for the quiet room because, "That is impossible" is not a real answer to the request for a quiet, safe, smaller room in a normal building.  When I read that I was thinking, what is this school, a yurt?  A yurt and there are none of those pie dividers?  Because, seriously, buildings have rooms.  That is a well-known feature of buildings.  Or maybe it is like a super giant echoing warehouse that doesn't even have a bathroom or an electrical closet?  Dude.  "That is impossible"??!!??  No, it isn't.  It isn't impossible.  It is important. 

Two reasons it is important.  Reason one: it the same kind of thing as is the ramp, or the elevator.  It is the removal of the barrier that sensory over-stimulation causes to learning.  Reason two: it is not OK to stomp all over the self-advocacy efforts of a teenager.  This boy is engaged and involved.  This is actually dreamy and they should relish it.  It is the opposite of defiant.  I have never been able to hear my own self speak, but I will tell you this, I do not recall ever as a teenager being able to deliberately help adults understand me as well as your son is doing.  Myself, I was not clear on what was going on with me, and as best I can recall, I said things that would have seemed cryptic and non-useful, such as "I can't" and "There are no windows" and "It's... there's not enough music" and "I'm sorry" and possibly, if I got up the gumption to say it out loud (I have to check with my mother) "I just can't see the point."  I know that last thing was in my mind. 

Your son, miraculously, has a part of him that still sees the point.  He is trying to advocate for himself for a place at the table, for the barriers to his learning to be removed from his high school experience.  His teachers are probably well-meaning, and now, I hope, they will become well-educated.  If there are further problems please feel free to have them contact me because I believe they want what is best for him but just had a conceptual glitch about what constitutes an educational barrier for a neuro-diverse student.  If you tell them what I said here and there are further problems, I may not have expressed things sufficiently well and would be happy to try more analogies or bring up studies. 

So this is, in a nutshell, why I think that the things you have already said, in addition to the things on the list you are coming up with together, should be the things you ask for, and you should also bring up some of the things I have said in case the analogy helps get the point across that by asking for barriers to learning to be removed, you are NOT taking him backwards, you are allowing him to move forwards, and you are also supporting his efforts at self-advocacy, which is something that is valuable and always to be supported, because when you lose that, he will be ever so much more difficult, and that is probably why my Mom said "be sure to put VERY," because she was talking about me back then, and I did not self advocate properly, and that took AGES for me to get my life together as a result, because how could people help me?  Your son is not like that.  He is with you, telling people.  Right on to that! 

Best of luck to you.  I didn't want to wait until seeing the list you guys make up because I wanted you to have time to mull over this and write back if you wanted.  But if you want to write back with the list I will be very interested :). 

Best, Ib


  1. yeah! I so wish you'd been around when my son was in school...

    1. What years was he in school? I wonder what I would actually have gone on and on about at the time... Mass Transit? Comparative religion and world mythology? Ethnomusicology? The surprising interrelation between axiological truth patterns?

      Maybe now is best ;)

  2. Ibby, You are as awesome as ever. You both amaze and crack me up. You embody the 'schmear.' You know what I'm talking about.
    Peter Gabel

    1. Peter Gabel! How I have missed you! YOU are the schmear! Happy flap to see you here!!!

  3. Hi Carol,
    I'm another autistic 'adult' (I put adult in quotes because I'm a phd student, it doesn't quite feel like adulthood yet).

    Anyway, I agree with everything Ibby said, plus I wanted to add some things. First of all, your son obviously WANTS to learn, and has an idea of how to make it possible for himself to learn. That's a lot more than most of us can manage at that age.

    Anyway, it might be interesting for the IEP team to know that I'm a phd student, and I still take sensory breaks and have a schedule that lets me function in a way that I can. I also have a perfect 4.0 in all my graduate classes, because I have been able to not only do the work and learn everything, but deal with sensory-related issues and social issues properly. I think perhaps, you should encourage your son, who is definitely a self-advocate already (yay!!!) to write the IEP team a letter. It's frustrating that they make him be in the room, then point blank refuse to listen to him. Perhaps he could try explaining his point of view and why this would help him. And if all else fails, then perhaps talk directly with his teachers and see what they can accommodate on their own. I'm lucky, that most of my accommodations are things I can do myself - stim toy in class, etc. I've worked VERY hard at my executive functioning so I can keep track of things, but still.

    Good luck!


    p.s. I think you might enjoy reading snippets of my blog - not quite as cool as 'ask an autistic' here, but I do answer a lot of questions. :)

    1. The Third Glance is EXTREMELY MEGA COOL... don't let E's modesty fool you... and a handy link is located always at the upper right of this blog in the blogroll for easy clickin'. The Third Glance. You saw it here. Or maybe you saw it at Emma's Hope Book already. Because E is awesome.

    2. E, Carol here (was carolmom before, but can't remember how I signed in that way). I've done more than read snippets of your blog, I've eagerly read many of your posts! Might have even commented, I can't recall. I know I've repeated some of your stories to family and fellow autism moms, and in fact, it was probably your blog about being so sensory sensitive in the lab that made me realize I needed to readdress this with the school. Thing is, my son doesn't often overtly complain about specific sensations in school, but I KNOW (he can't stand the smell of lit candles or computer dusting spray, he cringes when I crumple paper, he's very picky about textures on skin or in foods, etc.) that he has sensitivities. Thank you for your comments!

    3. PS, Ibby, I'm not sure which of you I found first, but likely found both of you through TPGA, for which I'm grateful.

  4. Some great advice here, Ibby.

    The IEP process with its "opposing sides" is really frustrating for parents, students and concerned educators. You can see the frustration on a special ed teacher's face as an administrator attempts to put up a budget barrier to her (I have a particular teacher in mind as I write this, or I wouldn't have specified gender) students' success.

    I hope Carol and her son continue to fight for accommodations that allow him to best succeed in school.

    1. Jim's right. A lot of times the teacher does know and want better but is curtailed by an administrator. Also, a lot of times the administrator knows and wants better, but is curtailed by the school board. This is the truth.

      However, the language of flat refusal of a simple inexpensive thing like use of a room (assuming a non-yurt type, room-having style building) and then saying the mother is crazy and trying to make the kid go backwards by protecting him from sensory onslaught so he can learn... this particular example seems like one where just a little clarification (or professional development) could be a good thing all around, because there is no evidence that anyone in the room had the concept.

      What I do want to add to what Jim is saying, piggyback-style, is that this culture of Opposite Sides of the Table that teachers and administrators are trained in (and that the law seems to sort of lend itself to) really sets up a tense situation where the alleged "sides" are almost planning to disagree from the get-go, which is the opposite of what a team ought to be. And yet, it's called an IEP team. That's just wrong.

      In real life, everyone there should be, and likely is, albeit perhaps from a different experiential perspective, there for the kid. I wrote an article about this here, called something like "IEPs." One of the first.

      The student and family should be the thought leaders in the meetings, but this is intimidating, and also, they rarely told that they have the right to be the thought leaders in any kind of sufficiently understandable way, or even if the language is accessibly, it is given to them at the last minute.

      Let's change some of this. Or all of it.

      Everyone: gain a shocking amount of expertise in these matters. Write to your Senators and Representatives. Kick some ass.

      Ib ;)

    2. And in "no evidence that anyone in the room," by "anyone in the room" I mean the mass quantities of non-family-members.

    3. Sorry about my grammar. The fire drill thing happened again :(.

    4. Jim and Ibby, I have always felt that the teachers at my son's current school have accepted his need for accommodations and supports and tried their best to help him. I feel bad for the burden his daily reports, etc. must be, with no extra help in the classroom. I truly do think that it's a matter of his being so "smart" that it masks a lot of his difficulties. He hasn't helped himself, either, having the attitude he does from being misunderstood all the way through school until seventh grade - preferring being seen as uncooperative to being "special" (or worse yet, a teacher's pet). Even his own siblings often call him a jerk, and again, sometimes he is one!

      Several of the teachers and other team members gave good suggestions, or had a point of view that I hadn't thought of, and I did feel we were all on the same team...despite my meltdown in the first meeting, and the lack of understanding about the sensory issues.

    5. And sorry about the fire drill issues! Yuck!

  5. Wow! This was terrific, all of it. Just loved reading it. Yay Ibby!!

  6. Hi, Ibby, this is Carol again. I can't seem to remember how I signed in last time, so I'm appearing as anonymous. Technology and I have a love/hate relationship.

    I'm sorry for not replying sooner. I do so appreciate your kind words and your advice. I actually forgot your website's name or address (typical for me), so didn't read your followup before our second half of the IEP meeting. So I pretty much went ahead and signed the IEP with few real changes (knowing I can call another meeting as needed), since it was due to expire in a few days. Unfortunately, despite the fact that in school the behavior plan appeared to be working, my poor son grew so agitated and depressed that we hospitalized him again for several days. He hasn't been back to school yet, due to the Thanksgiving break. Just like any time he is sick, suspended, or on break, his mood has improved daily since getting home, although at first whenever I tried to get him to do some of his makeup work, he would ask to go back to the hospital. I spent half an hour trying to help him stay calm enough to work out one algebra problem today, sandwiched in between two video game sessions.

    So anyway, I apologize again for not acknowledging your very thoughtful response sooner, and I plan to try again to brainstorm with him for ideas of what would help (aside from not making him go, which is his current position). Thanks for your time and interest!

  7. That was my idea at the time: not going. Kid after my own heart. I am so glad to hear back from you! Happy Thanksgiving!

  8. PS You can sign up some way on here to get notified. If you want, you can write back if/when he helps you with a list and we can tighten the answer. I like how you are giving the teachers and everyone the benefit of the doubt in general. You seem like a seriously excellent person.

  9. I have a question about whether or not it is "unreasonable" to request a quiet room at a noisy membership workshop as an ADA accommodation. Wearing ear protectors is not sufficient, and I need to be alone, so just going to a coffeehouse isn't helpful. I can't sit in my car because it was stolen from the workshop parking lot, and sitting in a parking lot in a busy downtown area will attract scary people.


  10. That sounds to me like a reasonable request. You can be very helpful to their ability to do the right thing if you help locate the room and it is not majorly attractive and liable to make everyone else have paroxysms of jealousy (this is just my experience). For example, rather than saying "I found the corner office upstairs with the view would be perfect," which they are expecting to hear, and may have planned how to say no to, you come out with "There's that room where we store old files, and it's just spacious enough for me to work in, and the files provide extra sound-proofing, and it doesn't seem to get any foot traffic--so that would do me perfectly."