4KookieKids Posted February 12, 2018 Share Posted February 12, 2018 I don't think I understand what it is, what "difficulties" with EF look like, and how it might be weaving in and out of the fabric of our lives without us even realizing it. I recently ran across a report that I probably should've paid more attention to at the time, but had other things on my mind, and I'm wondering what good next steps would be. I somehow missed that my ds8 scored pretty low on every single scale in the Comprehensive Executive Functioning Inventory (CEFI): attention, emotion regulation, flexibility, organization, planning, self-monitoring, working memory, etc. Many of these seem (at least in part) similar to struggles that I associate with his ASD-2 dxHe's / We've been struggling a lot with life in general lately, and I'm wondering if there are things I can do to at least make some things easier. One point that I find very confusing is that he scored well on the "Selected Executive Functions" similarities, block design, and child trails B (whatever those are!) They are in the same section as his WISC and WRAML results (all of which were in the superior / very superior range), and not in the same section as his very low CEFI results (most of which were between the 9th %ile and the 20th %ile) I don't really know how to interpret this, and any insight would be appreciated! Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 12, 2018 Share Posted February 12, 2018 The Source® for Executive Function Disorders By Susanne Phillips Keeley One of our SLPs who administers the CEFI has this book linked above. I read through it quickly during a session, good stuff. Yes, there's the assumption that his ASD is accompanied by significant EF deficits. You can also find therapy programs to hit many of those areas, pinging 'em like ducks, one at a time. Linguisystems has more on EF if you search around there. I think the discrepancy you're seeing is because those tasks were very visual. He's probably VSL. Quote Link to comment Share on other sites More sharing options...
4KookieKids Posted February 12, 2018 Author Share Posted February 12, 2018 What is VSL? I tried googling it, but got a bunch of stuff on marketing and probiotics. How do I help with EF stuff? I will check out the book you suggested, if I can find it - does it suggest things that will help? Is that something a psych would do? We're in the process of applying for an ABA program, but they've told us he's going to be a pretty low priority for them, since they focus on kids < 48 months (and they're the only place in town that offers individual ABA). Is this something that would be addressed by the folks doing the ABA (if we actually get it anytime soon)? I want to jump on this (while I wait for other stuff to go through), because we've had a lot of conflict lately with regards to him wanting to direct himself more, but he does such an abysmal job of it when I do give him more autonomy. As I read through this chart of EF scales and saw how low he scored, I felt like it was a little lightbulb saying maybe if I can help him or get him help with this, he can a bit more of the autonomy and self-direction that he really desperately wants. Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 12, 2018 Share Posted February 12, 2018 Have you tried visual schedules? They are a common strategy to increase independence but still give kids some structure. Kids have a lot harder time creating their own structure when they have weaker executive functioning. So a visual schedule can help them to plan ahead and then to follow a plan. My son did learn to do this in ABA but it’s not just in ABA, he worked on it in school and pre-school too and they don’t do ABA. It’s a common thing to work on. There are strategies to help kids learn to make choices and plan their activities with a visual schedule. Choice boards are also used. These are things you can google, but basically just a way to remind kids what their choices are lol. It could be a list or it could be pictures. Then you can write things on the list or move pictures with Velcro onto a list/schedule. There are apps that can use photos, or there are Velcro strips, or there are just lists on a piece of paper. 2 Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 12, 2018 Share Posted February 12, 2018 I haven’t read it but a popular book is “unstuck and on target.†You can see similar books to it on Amazon. https://www.amazon.com/gp/aw/d/1598576038/ref=pd_aw_sim_14_of_1?ie=UTF8&psc=1&refRID=ZGHGYPHFS1G53K3658DK 1 Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 12, 2018 Share Posted February 12, 2018 (edited) A lot depends on what level a child is at. For some kids maybe it’s fairly easy to implement some things, and for another kid, you could want to implement something like independently following a schedule but it’s hard to figure out how to actually make it happen. These are books I think would have ideas about implementing: https://www.amazon.com/gp/aw/d/160613003X/ref=pd_aw_sim_14_2/133-7290138-3473357?ie=UTF8&psc=1&refRID=1287HTYH3TST9WCTM5GE&dpPl=1&dpID=51LZrrr5QuL https://www.amazon.com/Visual-Supports-People-Autism-Professionals/dp/1606132156 Something to keep in mind, is that your son might be using written words instead of pictures, and might be doing more complex things, but the process for teaching him (depending on whether or not he picks it up easily!!!!!!!!!) might be the same process (to some extent) as if he were a pre-schooler using pictures. These two books I think are ABA type books with ABA type methods. If your son needs serious instruction to be able to implement using a schedule, it would be helpful. If he honestly does not, something like Unstuck and On Target would probably be better. (Where this is probably just one chapter or part of a chapter, and it’s assumed either it will be fairly easy for kids to pick up, or maybe they assume some kids started with picture schedules as pre-schoolers and have gotten older and past picture schedules, but have some basic experience already). My impression is it’s one of those things — maybe 5 pages of information is perfect for one kid, and more would be negative because it would be more to the point of being unnecessary and frustrating....... but for another kid, a whole book of information might be helpful because it is needed for implementing. It was HARD to implement with my son hence I might read whole books on one thing. But I know from my other kids, for some kids a 5-page version would truly be just right. A lot of things are like this with autism, and it’s something to keep in mind anytime things seem hard to implement or like they just aren’t going as smoothly as hoped. And at the same time, if something goes easier then there’s no need to make it harder just because some kids need more in that area. Edited February 12, 2018 by Lecka 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 12, 2018 Share Posted February 12, 2018 What is VSL? I want to jump on this (while I wait for other stuff to go through), because we've had a lot of conflict lately with regards to him wanting to direct himself more, but he does such an abysmal job of it when I do give him more autonomy. As I read through this chart of EF scales and saw how low he scored, I felt like it was a little lightbulb saying maybe if I can help him or get him help with this, he can a bit more of the autonomy and self-direction that he really desperately wants. VSL = Visual Spatial Learner This usually means that they think visually, and it can also be related to whole to parts learning vs. parts to whole learners. Dierdre Lovecky has written some stuff on 2e kids with autism, and she suggests that 2e kids with autism often need whole to parts learning following by instruction going parts to whole (step by step). This has been very true for me son (2e, ASD level 1 and ADHD). My son needs to see things from many angles before he feels competent. He will often have great insight and make intuitive leaps, but then be "stuck" because he has to piece together how he got there. First, listen to Lecka--she has been a big help to me. My son wasn't diagnosed until he was almost 9 (he passed as mostly typical for a long time), but he still has glitches that really require looking at autism materials, saying, "Okay, this is not where my son is, but why do they do this particular skill in this particular way?" and then figuring out how to do the same thing at the level where it's breaking down for my son. We definitely see glitches in the same categories, just at a whole different level academically, socially, etc. But the thought process, when I understand it, is very, very valuable. What kind of autonomy and self-direction does he want? Both my kids have ADHD and both are capable of some autonomy and self-direction in spite of serious EF issues, but they don't have even remotely the same pattern of strengths and weaknesses, lol! What is your son good at or motivated by? We might be able to suggest some specific tasks to build on that are going well or areas of strength to focus on. Also, if he wants autonomy, it's good to know how he'll handle it--for instance, will he still accept necessary feedback in that area? I am sorry you are getting a bit of a brush off by the ABA people. I think a good ABA person that is flexible would be a big help to you. Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 12, 2018 Share Posted February 12, 2018 I think it comes across like there are not enough ABA therapists to go around for more severe kids in your area, and so they limit their practice to more severe kids. In general it is more severe kids who are diagnosed earlier. I don’t think it’s like you waited too long, really. If that’s the situation they might also exit you to see another provider (like a speech therapist or a counselor of some kind) so that they have a space for a more severe child with no other options. I don’t know, they make different choices, but i have seen it be stressful for providers to have desperate people and have to have them on a waiting list. So anyway — I think ask if you are realistically ever going to be seen, short of a new provider coming to your area (and just increasing how many kids can be seen!). Or if it’s more that you will be seen eventually, but they may bump some kids ahead of you on the waiting list if spaces open up. Something else that happens is that for kids who don’t really age out of ABA (aka more severe kids) they will take up a slot long-term and so providers may rarely have slots come open. I think you migh need to find out who else offers autism-related services in your area and see about getting on their wait lists. CBT is also really good for autism. Quote Link to comment Share on other sites More sharing options...
Storygirl Posted February 12, 2018 Share Posted February 12, 2018 Another book that is excellent is Smart but Scatteredhttps://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=smart+but+scattered . The authors identify 14 (I think) areas of executive function, so it is a good overview of possible areas of difficulty, and it has evaluation tools and checklists to identify the specific areas you are dealing with. It's not specifically for autism, but it contains good information that you can build upon. They have a version for teens (not sure how old your son is). Some of the tests psychs do in evaluations do measure areas of EF, but there are so many life skills and functions that can be impacted. I think if you read through the list of EF areas in that book, it will provide you with some clarity. It's probably more helpful for you to think of his EF deficits in terms of what you see in daily life, instead of trying to start from the test scores. Test scores can be really helpful in some cases. We learned a lot about DS12's EF that we didn't know before he was tested. But there are so many practical parts of EF that you can identity and work on addressing, just because you see that there is a deficit in the life skills. And those can be obvious areas to target. 1 Quote Link to comment Share on other sites More sharing options...
KathyBC Posted February 12, 2018 Share Posted February 12, 2018 There are strategies to help kids learn to make choices and plan their activities with a visual schedule. Choice boards are also used. These are things you can google, but basically just a way to remind kids what their choices are lol. It could be a list or it could be pictures. Then you can write things on the list or move pictures with Velcro onto a list/schedule. There are apps that can use photos, or there are Velcro strips, or there are just lists on a piece of paper. Our quick and easy visual schedule was a list tucked inside a page protector, hung on the fridge, with a dry erase pen for daily checkmarks. The first ones were homemade on lined paper. Later, I googled 'free checklists for kids' that let me make my own with clipart and nice big boxes to check off. Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 12, 2018 Share Posted February 12, 2018 (edited) https://www.amazon.com/gp/aw/d/0976151707/ref=cm_cr_arp_mb_bdcrb_top?ie=UTF8 I couldn’t remember the name of this book, but my son is using a graphic organizer from it for an ABA program. I haven’t seen the whole book, I just know it is copied from this book because it is written on the bottom of the page. It’s the kind of graphic organizer that is topic + 3 details, and it’s the kind of thing that could be used by ABA, a teacher, a speech therapist, etc. It’s not something that could only be done by ABA. But the author has a BCBA which is an ABA credential. Edit: something I have noticed is that people will tend to use a book written by someone in their same field. So an ABA therapist is more likely to use a book by another ABA therapist, a speech therapist is more likely to use a book by another speech therapist, etc, but often they are very similar books! Because the same things will work ;) Edited February 12, 2018 by Lecka Quote Link to comment Share on other sites More sharing options...
4KookieKids Posted February 12, 2018 Author Share Posted February 12, 2018 Wow. Thank you so much for your input. My library has three or four of the books mentioned, so I have quite the reading list ahead of me the next few weeks. :-) Mostly, the Autonomy he wants is to structure his own day. He wants to decide when to do his math, went to his reading, went to do his music, etc. There are two main issues with what we’ve tried so far. The first is that some of his daily work has to be done with me, and the times that I am available (given that I have three other children ) never seem to correspond with the times when he wants to do his work with me. By the time he finishes up whatever he’s working on and is ready for me, whatever activity I had previously engaged my younger children with is nearing its end and my younger children Are demanding attention again. The second real issue is that he is not good about organizing his time. Left to his own devices, he takes 10 hours to do 2 1/2 hours of work. He spends a lot of time transitioning, he loses track of what he supposed to be doing, he forgets that he’s on his way to the bathroom and gets distracted playing with his younger siblings, He spends 20 minutes or an hour staring out the window making up a story in his head instead of working on the next task at hand, He spends 20 minutes setting up his piano stuff before he can do his lesson and another 20 minutes cleaning it up, if He remembers to clean it up at all, etc. All right more later but I’ve had more time to think about this and when my kids are in bed. But this is given me a lot to think about so thank you. 1 Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 13, 2018 Share Posted February 13, 2018 (edited) Wow. Thank you so much for your input. My library has three or four of the books mentioned, so I have quite the reading list ahead of me the next few weeks. :-) Mostly, the Autonomy he wants is to structure his own day. He wants to decide when to do his math, went to his reading, went to do his music, etc. There are two main issues with what we’ve tried so far. The first is that some of his daily work has to be done with me, and the times that I am available (given that I have three other children ) never seem to correspond with the times when he wants to do his work with me. By the time he finishes up whatever he’s working on and is ready for me, whatever activity I had previously engaged my younger children with is nearing its end and my younger children Are demanding attention again. That is hard. Within the time you have for him to work with you, can he choose the order, or do you have to choose it based on what you are struggling to get done because he's so inconsistent? You don't really have to answer that--I am just suggesting that if he can choose what order even if he can't choose the time, I would try to let him. If you think he would get rigid, maybe you he can decide, but he has to change it up the next week, etc. The second real issue is that he is not good about organizing his time. Left to his own devices, he takes 10 hours to do 2 1/2 hours of work. He spends a lot of time transitioning, he loses track of what he supposed to be doing, he forgets that he’s on his way to the bathroom and gets distracted playing with his younger siblings, He spends 20 minutes or an hour staring out the window making up a story in his head instead of working on the next task at hand, He spends 20 minutes setting up his piano stuff before he can do his lesson and another 20 minutes cleaning it up, if He remembers to clean it up at all, etc. EF books are FULL of ideas on how to learn about the passing of time, and this is very common. Transitions being an issue is probably also going to be in a lot of the books. I do want to ask if he's had an ADHD evaluation--my kids are both inattentive. One has mild hyperactivity, but it's more impulsive behavior than true hyperactivity. Anyway, the starting into space and not using time well got better for both with meds. Seriously better, although my younger one needed a new frame of reference because we had an attitude problem on top of the time blindness. He really acted put upon, like we were demanding all of his time. We solved that by timing himself doing something that he said "takes forever." We had him estimate how long it would take (he thought it would be 15 minutes). We timed him. It was about 6.5 minutes. He was stunned. Then we set the time for that 6.5 minutes and had him do something he consider fun. He couldn't believe how fast it went. We spent the day trying things for 6.5 minutes. He thought it was hilarious, and since then he's consciously been nicer about it. Now, that is my kiddo with ADHD but no ASD, so YMMV. My ASD kiddo doesn't have as much trouble with time, just the transitions and staring into space. All right more later but I’ve had more time to think about this and when my kids are in bed. But this is given me a lot to think about so thank you. Edited February 13, 2018 by kbutton Quote Link to comment Share on other sites More sharing options...
4KookieKids Posted February 13, 2018 Author Share Posted February 13, 2018 EF books are FULL of ideas on how to learn about the passing of time, and this is very common. Transitions being an issue is probably also going to be in a lot of the books. I do want to ask if he's had an ADHD evaluation--my kids are both inattentive. One has mild hyperactivity, but it's more impulsive behavior than true hyperactivity. Anyway, the starting into space and not using time well got better for both with meds. Seriously better, although my younger one needed a new frame of reference because we had an attitude problem on top of the time blindness. He really acted put upon, like we were demanding all of his time. We solved that by timing himself doing something that he said "takes forever." We had him estimate how long it would take (he thought it would be 15 minutes). We timed him. It was about 6.5 minutes. He was stunned. Then we set the time for that 6.5 minutes and had him do something he consider fun. He couldn't believe how fast it went. We spent the day trying things for 6.5 minutes. He thought it was hilarious, and since then he's consciously been nicer about it. Now, that is my kiddo with ADHD but no ASD, so YMMV. My ASD kiddo doesn't have as much trouble with time, just the transitions and staring into space. This is good to know. Hopefully I can get those library holds in the next few days. At his neuropsych eval last year, they did test for ADHD and said he didn't have it. They said that gifted + ASD often looks like ADHD and certainly does sometimes in him, but the testing showed that he actually has a slight tendency to hyperfocus, actually. I didn't know how to make sense of it, except to conclude that maybe he often hyperfocuses on his OWN thoughts, to the exclusion of what *I* want him to do, so maybe it looks like inattention to me, but if I were in his head, it's quite the opposite? (Like I'm constantly interrupting his one-track mind, lol.) I think the time experiment sounds like an interesting one. I may have to consider spending a day doing a similar experiment... Hmm... Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 13, 2018 Share Posted February 13, 2018 Another way to get strategies for working with him is to get an OT or SLP used to working with kids with autism. They'll figure out what level of support he needs to function and bring that in, and then you can carry that over at home. For instance, we've got an OT now who somehow manages to turn his choices into the plan that he works for as compliance with her. Crazy, eh? Brilliant. Quote Link to comment Share on other sites More sharing options...
4KookieKids Posted February 13, 2018 Author Share Posted February 13, 2018 For instance, we've got an OT now who somehow manages to turn his choices into the plan that he works for as compliance with her. Crazy, eh? Brilliant. I have to confess that I'm not really sure what you mean right here? Quote Link to comment Share on other sites More sharing options...
PeterPan Posted February 13, 2018 Share Posted February 13, 2018 That's my point. I've had my ds through a lot of different therapists in the last few years. Some were doing evals, some therapy. It's really informative to watch people who have a lot of experience with autism work with him, because they have a lot of tools in their strategy toolbox. So I'm saying if you can't get ABA to do that for you, then working with an OT or SLP (which he doubtless would benefit from anyway) is another way. Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 13, 2018 Share Posted February 13, 2018 Your son sounds like he is basically very compliant, like it's his personality. I don't know, it just comes across that way to me. For kids who are not naturally compliant, using schedules is a way to build compliance. A person offers choices and puts them on a schedule or a first, then board. Like -- a Velcro board where you put a picture of what you will do first, (what the parent wants), and what you will do next (what the child wants), and it's very obvious to the child, they can see, that they got to make a choice about what they would like to do, and after they do the parent's choice, then they will get their own choice. So sometimes therapists will do this in various ways, but if they are choosing to be very concrete and use a visual schedule, they can build the whole schedule with the child, with a mix of the therapist's choice and the child's choice, and they can also let the child make choices about what order to do things in by choosing how to put things on the schedule. It's just a good way to get buy-in from kids who don't easily see why they would want to have buy-in. It doesn't sound like that would be a goal for you, but sometimes kids will work faster or more focused if they know that something they want to do is going to happen next, so similar strategies might be helpful. But it's hard to say. Quote Link to comment Share on other sites More sharing options...
4KookieKids Posted February 13, 2018 Author Share Posted February 13, 2018 Your son sounds like he is basically very compliant, like it's his personality. I don't know, it just comes across that way to me. It doesn't sound like that would be a goal for you, but sometimes kids will work faster or more focused if they know that something they want to do is going to happen next, so similar strategies might be helpful. But it's hard to say. You are right. He is very naturally compliant and eager to please . It made dealing with my next three kids a little more challenging at times. LOL. Unfortunately, offering incentives for getting things done quickly often backfires for us. He gets very anxious and stressed out about not having enough time, and then things take even longer because he so stressed out about the prospect of missing the incentive. Alternatively sometimes he’s so focused on thinking about the incentive, he can’t give the task at hand the proper focus . Maybe I’m just using incentives improperly! :-) Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 13, 2018 Share Posted February 13, 2018 You might need to look at more anxiety type strategies. There is stuff out there :) Different things work better for different kids. Some kids will respond to things, but if your son doesn’t respond the same way that doesn’t mean you are doing it wrong. There might be things to try tweaking or it might just not be the best approach to take. This sounds like stuff where if there is a counselor in your area that works with autism its the kind of thing they work on. I think anyway. I would never not recommend ABA, but I think you might hear ABA and not hear about other options. There are other options and your son might be a good fit for the more counselor, CBT stuff, too. Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 13, 2018 Share Posted February 13, 2018 Also anxiety can impact executive functioning so if you are seeing a link there, it’s a real thing and it is something that other people see, too, and there are strategies out there. But I think people talk about it more in terms of anxiety than executive functioning sometimes. Quote Link to comment Share on other sites More sharing options...
kbutton Posted February 13, 2018 Share Posted February 13, 2018 At his neuropsych eval last year, they did test for ADHD and said he didn't have it. They said that gifted + ASD often looks like ADHD and certainly does sometimes in him, but the testing showed that he actually has a slight tendency to hyperfocus, actually. I didn't know how to make sense of it, except to conclude that maybe he often hyperfocuses on his OWN thoughts, to the exclusion of what *I* want him to do, so maybe it looks like inattention to me, but if I were in his head, it's quite the opposite? (Like I'm constantly interrupting his one-track mind, lol.) At his age, with his set of needs, it can be hard to decide on ADHD or not. It could be perseveration, etc. You should know that ADHD kids hyperfocus too, lol! But that's not to talk you into ADHD, it's too keep it in mind and just see how things unfold. Lots of people don't seem like they have ADHD until they hit a certain level of difficulty in life or school. Unfortunately, offering incentives for getting things done quickly often backfires for us. He gets very anxious and stressed out about not having enough time, and then things take even longer because he so stressed out about the prospect of missing the incentive. Alternatively sometimes he’s so focused on thinking about the incentive, he can’t give the task at hand the proper focus . Maybe I’m just using incentives improperly! :-) Not unusual for 2e kids. Actually not unusual for gifted kids overall, but then add in 2e, where they need incentives, but they are difficult to make work... you get this kind of thing. I wouldn't stress about it, but I would try to find ways over time to find/use low-stakes, high motivation incentives. My son had to grow into them. Our first ABA person had to get super creative, and thankfully she realized that this dynamic was real and not something I created. Some kids will respond to things, but if your son doesn’t respond the same way that doesn’t mean you are doing it wrong. There might be things to try tweaking or it might just not be the best approach to take. :iagree: Quote Link to comment Share on other sites More sharing options...
Lecka Posted February 13, 2018 Share Posted February 13, 2018 (edited) https://www.autismclassroomresources.com/behavioral-tools-mistakes/ I just happened to be on this website looking for something else, and I saw this "behavior tools for perfectionists' meltdowns." You can see some examples of some strategies people use. It's not anything I use, my son who has autism does respond really well to motivation-based strategies, and I see that it works well with him. The strategies from the link are more CBT type stuff, and it's not stuff that works very well with my son. He has had some social stories but they are not an awesome strategy for him for the most part. He had one he did really well with, that was very worthwhile, but it was very, very concrete. It was about asking for a drink when you are thirsty, which he used to struggle with because he had very low bodily awareness. Edited February 13, 2018 by Lecka 1 Quote Link to comment Share on other sites More sharing options...
exercise_guru Posted February 14, 2018 Share Posted February 14, 2018 I am going to watch this Webinar you might find it interesting. WebinarAdditude Magazine :Boosting Executive Functions and Building Independence — Together 2 Quote Link to comment Share on other sites More sharing options...
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