Autism traits worsening with age?

[AimeeM]

In some ways, The Marvelous Flying Marco has made huge leaps in progress. Most notably is his progress in expressive language. In the span of two years, he went from non-verbal to speaking in complete sentences and using (correctly and in correct context) large words that he never would have attempted prior. He still struggles with some things, like saying he's hungry and crying, insisting he's hungry, but refusing food -- only for us to realize that he's actually thirsty, but couldn't convey it.

His receptive language is still very delayed, but isn't "worse."

 

I know "worsening" isn't the right word. Is it just that the traits are coming up in newer, bigger ways as his interactions change with age? He's making even LESS eye contact now. I won't force eye contact... it just seems worse. His SLP had him to the point where he would at least look at your face (necessary for her to help him learn to speak), and that is something she worked on with him for months. She had him in a good place where he would at least look at your face in some capacity. Now, though, when you speak to him, and he looks "at" you, he's actually looking to the side of your face, toward your ear, behind you / past you. Working with him on recognizing facial expressions is difficult at this point. If I can get him to look at my face, it's only for a split second before his gaze just drifts back over to my ear/past me. To be fair, he never really had "eye contact" for more than a split second, but he used to make "face contact" at least.

 

Early Intervention services seemed to help with some of the more dangerous or specific issues he initially presented with (sensory seeking, violent meltdowns, speech, motor skills, etc), but he's now exhibiting traits he didn't show before -- walking on his toes, flapping while he walks back and forth across the same path in a room (often while he repeats things to himself over and over). Talking to himself is something he's always done (more of a "narration" of events, usually), but now it could be anything random. None of these things are dangerous and none of these things are things we want to change about him, but I am curious about how these things just seem to "develop." :P 

 

[Crimson Wife]

Saying this gently, but I think you should reevaluate your decision to forgo ABA. Seriously, this is a child who NEEDS effective intervention ASAP.

[PeterPan]

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism)

 

I'm NOT saying you should stop his stims, however if you read a bit on FBA you'll be able to pick out the *function* of the stim and then realize the patterns. My ds' stims rotate, so he'll do something for a month or two and then it disappears and a new thing becomes the flavor. So it might look worse but just the specifics changed, not so much the frequency. If the *frequency* of the stimming is changing, I would want to know the function and to try to reduce his stress or deal with whatever the issue is.

 

You could look into RDI. It would be a "not ABA" option for you to work on some of the things you're describing (joint attention, eye contact, etc.).

 

He's young enough that it's not at all (not at all!) a fixed or concluded deal, but there is a page with social communication profiles at SocialThinking.com What you'll find with those is that as the dc settles into one (around ages 8-10), they then tend to stay there. So they improve relative to themselves, but their peers are still changing, maturing, growing too.

 

You might go ahead and teach him signs for the most important things like hungry, thirsty, etc. Self-advocacy is huge, and that's an easy one to eliminate barriers on. Those signs are so common many daycare workers would probably recognize them, meaning if you wanted to leave him with someone for a few minutes here or there he could communicate and mand more clearly. For my ds, even when he's stressed, the ASL will still be there.

[Crimson Wife]

We just saw the pediatric neurologist today (who has been treating my DD since early 2012) and she was going on and on about how much progress DD has made despite the whole progressive hearing loss that happened in the interim.

[PeterPan]

If he's more stressed and can't communicate it, that's really rough. My ds' stims increase when he's stressed. They can also be when he's happy, but that doesn't sound like what's going on.

 

To follow up Crimson, maybe at least more hours of SOMETHING. RDI, Play Project, straight ABA, somebody who blends ABA and other things. And the only reason I say that, not to imply something like oh you're efforts aren't good enough, is because I see how my ds surges when he's with really good people. It's hard to be fresh like that all the time. Sometimes it's not the label but the person, the way they're effective at connecting. And to be that fresh all the time is a lot! We recently resumed speech therapy and this new SLP is really kicking butt with him. Like not so much that they're making tons of improvement on motor planning, but it's that really subjective bounce *I* see as a mother when he interacts with people. And *I* can't be fresh enough to do that all the time! Bringing in good workers is like cloning me. It admits I'm mortal.

[Lecka]

I do agree with Crimson Wife.

 

But if that is not a good option right now, I still have ideas.

 

One, there are other ways to work on facial expressions. He doesn't have to look at your face.

 

You can use pictures. You can use videos (and pause them if you want -- great if he does have favorite videos! You can use cartoons or THOMAS where they have very exaggerated facial expressions. My son used Scooby Doo for example. You can use google image and type in the name plus the feeling and find pictures.)

 

There is also a chance he would be more comfortable if you both stood in front of a mirror and he looked at your face in the mirror instead of directly at your face.

 

We also had the issue with not saying he was thirsty.

 

What really worked in the end was a social story about feeling thirsty and asking for a drink.

 

But there is also "bodily awareness" that could be first noticing the signs he is thirty. Anytime you know he is thirsty, label "you are thirsty" and see if you can get him to say he is thirsty. (Or "I want a drink" or "drink" or whatever you want him to say.) That is (if you are out and about) what he needs to do to let you (or grandma etc) know he is thirsty.

 

If there are any physical signs like sweating, having a red face, etc, point those out.

 

If there are times he commonly is thirsty, point those out.

 

Like if he is playing outside and gets thirsty -- you can make the connection between playing outside, maybe getting hot (or not), and getting thirsty.

 

If this is a bodily awareness issue, I will let you know, we saw this also with being aware he needed to pee, recognizing he was too hot or too cold, and recognizing he was in pain.

 

Being thirsty and getting cranky, or not being potty trained, are more daily things. But when they come up, not noticing (or not reacting as I expect -- this is a mystery -- and I wonder the same on the pain one -- what if he is in pain and just doesn't have expected reactions??????) hot/cold and not being able to communicate pain/illness were actually a lot more upsetting to me.

 

But increasing bodily awareness in general will help with the individual things a little, but also they are all individual things to notice.

 

Now hopefully it is just a language issue. But if you see other signs of low bodily awareness -- it was such a mystery to me at the time.

 

Oh, another thing we have really worked on is noticing he is getting hot and taking off a jacket if he feels hot.

[Lecka]

Also -- this may seem obvious -- but if you know he is in pain (he has fallen, whatever) really notice how he is acting, because it can help when maybe his stomach hurts (or whatever) and you are wondering "does he not feel good?" This took me some time to figure out, and I never completely figured it out. Fortunately he got better at being able to communicate not feeling good or hurting.

[Lecka]

I googled and found "interoception," but I have never heard that word used.

 

I would hear bodily awareness or internal (I think) body awareness.

 

But I googled bodily awareness, and stuff about sports came up. And then I googled internal bodily awareness autism, and interoception came up.

 

I couldn't find any of the little activity ideas or pictures or stories like I can usually find when I google stuff with autism.

 

Just to let you know, even though this seems like an OT area (and is), I got help for this from ABA.

 

That is because there is the combination of the noticing, the cause-and-effect relationship, and then the language use. Initiating language and making requests are really deeply entwined with this (for saying you need to pee, saying you are thirsty, etc, self-advocacy skills).

 

That was my experience at least.

 

But I lived in a smaller town and honestly there just was not an OT who had experience with this.

[Lecka]

I really apologize if I am off on a tangent!

 

But just as something I wished I had seen much earlier; there is an article on spectrumnews.org called "unseen agony: dismantling autism's house of pain" that was really informative to me.

[gardenmom5]

I started him with a ND who works with a lot of asd kids, she uses lab tests, as well as experience.   his mercury came back really high, so we did 8 weeks of daily glutathione injections.  (it's the only form found to actually get into the cells.  capsules don't.). it's a very heavy duty antioxidant made by the body.  the results were so remarkable - we increased it to 12 weeks.  after a month - a friend (didn't know what we were doing) came up to me to ask what was different as he was looking at her and engaging with her.  he was retested at the end and his mercury was zero. 

[Jennifer-72]

I googled and found "interoception," but I have never heard that word used.

 

I would hear bodily awareness or internal (I think) body awareness.

 

But I googled bodily awareness, and stuff about sports came up. And then I googled internal bodily awareness autism, and interoception came up.

 

I couldn't find any of the little activity ideas or pictures or stories like I can usually find when I google stuff with autism.

 

Just to let you know, even though this seems like an OT area (and is), I got help for this from ABA.

 

That is because there is the combination of the noticing, the cause-and-effect relationship, and then the language use. Initiating language and making requests are really deeply entwined with this (for saying you need to pee, saying you are thirsty, etc, self-advocacy skills).

 

That was my experience at least.

 

But I lived in a smaller town and honestly there just was not an OT who had experience with this.

There is a book: Interoception the Eighth Sensory System that offers lots of strategies to increase awareness by Kelly Mahler. I found it a fascinating read and very helpful. In addition to addressing hunger, thirst, need for restroom, and pain she talks about the role it plays in acting as an emotional gauge. That emotional gauge part was what I was reading it for. She offers her program of activities to increase awareness, so there are lots of practical ideas in there as well.

[PeterPan]

There is a book: Interoception the Eighth Sensory System that offers lots of strategies to increase awareness by Kelly Mahler. I found it a fascinating read and very helpful. In addition to addressing hunger, thirst, need for restroom, and pain she talks about the role it plays in acting as an emotional gauge. That emotional gauge part was what I was reading it for. She offers her program of activities to increase awareness, so there are lots of practical ideas in there as well.

 

Wow, that looks super useful! We still deal with this with ds, because he wets, etc. The idiot ps says lots of kids wet and they don't care. I think it's just so complex that it's hard to find answers. I've always tried to smooth it over, because we've had the strong sense that wiring wasn't connecting, that it wasn't volitional and wasn't something that ragging on or us doing more or whatever would help. 

 

Have you used the assessment book? I guess there's a sense in which it doesn't matter, as it's obvious he has the problem. You can tick down the list and he's struggling with those things.

[Jennifer-72]

I haven't used the assessment book. She provides the assessment in the book with a do not copy watermark. I could tell from that where ds would have trouble and what we needed to work on. I think the assessment pack she provides is just for therapists wanting to use it in their practice.

[PeterPan]

And am I understanding correctly that it gives exercises or things to DO about it? That's what I'm excited about. 

[Jennifer-72]

It does. I only paid attention to the ones that were applicable to our situation, but I am happy to let you know if she did in fact have specific exercises bathroom use - I am sure she probably did, I just would have skimmed by them. She had some really cool one about heart rate that I plan to do with ds. I am just out for the day and don't have the book to look at right now. I can post back tonight.

[Lecka]

Wow, thanks Jennifer! This is one of those things where it is SO hard to find good information!!!!! I will check out this book, too!!!!!!!

[PeterPan]

It's coming in just a couple days, so don't sweat it. We'll see when it comes. :)

[Jennifer-72]

Lol. I don't want to be held responsible if it doesn't have what you are looking for. I do think you will find it useful.

Edited May 19, 2017 by Jennifer-72

[Lecka]

Well, it is interesting so that goes a long way, even if it is not the most helpful thing ever.

 

But I think understanding more about it would go a long way.

[Guest]

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[Guest]

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[Jennifer-72]

Okay, I am back with a bit of a description of the activities for anyone who may be reading. There isn't anything specifically about bathroom use, other than using some scheduling reminders, etc while you work on the activities. That is because the plan in the book works on increasing introceptive awareness as a whole. Obviously as that awareness increases problems should decrease. The simplest way to describe the plan would be to say they are in a way like mindfulness exercises, but different. She is trying to teach and breakdown this attention/awareness of all the sensations in your body by starting in the most concrete manner possible.

 

Hopefully that makes some sense. I really did find it very interesting and plan to start putting the ideas into place as soon as we finish up a couple of other goals we have been working on.

Edited May 20, 2017 by Jennifer-72

[PeterPan]

The book came!!!! It's fabulous, just what I needed, so excited. I agree it's like mindfulness on steroids, btw. We'll see. As soon as I can, I'm going to start weaving things into our plan and see what happens. How long have you been working on it? I have a feeling it's one of those things that takes a while...

[Lecka]

Awesome!!!!!!!

[Jennifer-72]

The book came!!!! It's fabulous, just what I needed, so excited. I agree it's like mindfulness on steroids, btw. We'll see. As soon as I can, I'm going to start weaving things into our plan and see what happens. How long have you been working on it? I have a feeling it's one of those things that takes a while...

It is so fascinating, isn't it? It makes so much sense and in many ways is very simple, but it is just not something that I ever stopped to think about how ds may or may not be experiencing these sensations. I haven't been doing much with it yet, I am trying to finish this other program I have been working on with ds to improve verbal processing speed. I really think the heart rate activities are going to be the key for ds. I do think it will take a good amount of time working on it though.

Edited May 22, 2017 by Jennifer-72

[PeterPan]

Ok, fess up, what are you doing for verbal processing speed? :D

[Ottakee]

Another thing we use for communication at the school I work at is PECS (Picture exchange communication system).  You can pair it with his oral language but sometimes having the picture to point to might be helpful when he is unable to communicate verbally.  We use it for picture schedules as well which can cut down on the anxiety.

 

Does he seem to have a lot of anxiety?  This is a sample size of 1, but one of my students, 5 years old, was started on a med for anxiety and some of his symptoms decreased a great deal.  More interactive, able to answer a question, etc.  This child is also doing ABA with great results.

 

Even if you don't want to send him to a local school for little ones with autism, could you consult with them for ideas?  The teachers I work with are a wealth of ideas and do some amazing things with these younger ones.

[Jennifer-72]

Ok, fess up, what are you doing for verbal processing speed? :D

Think, Talk, Laugh! A Workbook for Increasing Verbal Processing Speed. I can't really give a review as of now. Since ds has had access to a great SLP since he was 2 we have covered most of this anyway, but there is still some worthwhile stuff. I can see it being more useful if someone didn't have access to an SLP and are trying to piece together stuff on their own.

[Guest]

I came across *Think, Talk, Laugh!* probably over a year ago and had it on my "keep in mind" list for a really long time but decided against it. My two have always been hands on visual learners and this would not have suited my 8 yr old's learning style. I opted instead for Critical Thinking materials. We use apps, software, daily life interactions and conversations, we pull ideas from the CM approach, and I also use colorful school texts, Jolly Grammar, and more. Each child's learning style is different though, as are his/ her needs in language. I am sure this is a wonderful resource for those it is suited for.

Edited May 23, 2017 by Guest

[Guest]

Here's how a visual person processes verbal language.

 

http://www.grandin.com/inc/visual.thinking.html

 

This is how I process language, so I get what she means. Visual kids need the imagery when they are yound in order to have these images accessible in the future during conversations. It is often why some may feel that kids on the spectrum process things slower. Visualizing everything takes longer. When visual thinkers are only exposed to language through auditory sources, it does not provide them the opportunity to make the needed visual connections to language; hence why you often come across reading comprehension issues with some. I don't know how many SLPs would even know much less factor that in with a verbal child!

Edited May 23, 2017 by Guest

[Jennifer-72]

I came across *Think, Talk, Laugh!* probably over a year ago and had it on my "keep in mind" list for a really long time but decided against it. My two have always been hands on visual learners and this would not have suited my 8 yr old's learning style. I opted instead for Critical Thinking materials. We use apps, software, daily life interactions and conversations, we pull ideas from the CM approach, and I also use colorful school texts, Jolly Grammar, and more. Each child's learning style is different though, as are his/ her needs in language. I am sure this is a wonderful resource for those it is suited for.

My problem with the book for ds is that it is too easy for him.

[Guest]

My problem with the book for ds is that it is too easy for him.

I was speaking about autistic kids that are visual thinkers. Not all autistic kids are. The points I made had nothing to do with level of difficulty and everything to do with suitability based on the child's learning style. Level of difficulty had nothing to do with my decision to choose other resources.

[Jennifer-72]

I was speaking about autistic kids that are visual thinkers. Not all autistic kids are. The points I made had nothing to do with level of difficulty and everything to do with suitability based on the child's learning style. Level of difficulty had nothing to do with my decision to choose other resources.

Wasn't trying to say it did. I know you were talking generally about the whole thing, and thought I should clarify what my issue was with the book. Ds is a visual thinker and we have built his language skills utilizing that strength. I have along with the guidance of our SLP also done lots to ensure that his language has been built in as organized a fashion as possible. This makes it so that he can so that he can recall things quicker. Our SLP has always compared it to a filing cabinet. You can just jam everything in there, but it is going to take you a long time to find it when you need it. Clearly it has helped, now I just need to find a way to challenge him to see if we can make any further progress.

Edited May 23, 2017 by Jennifer-72

[Guest]

Organizing information in the brain is something Temple Grandin talks about and a skill I developed on my own, for myself. It is why I excelled at every school I went to, regardless of being moved around between two different language speaking provinces and a European country between the ages of 4 and 10. 2E brains can come up with their own compensations. This skill involves executive functions, which is why, depending on how someone's executive functions are affected, it can either come naturally or can become an acquired skill with guidance. It is not directly linked to what I was saying though! Also, people that do not have access to SLP services, as you mentioned in the first post, will not have that background work. This was why I gave another perspective, as someone who has pieced together my own resources.

Edited May 23, 2017 by Guest

[Guest]

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[PeterPan]

Wasn't trying to say it did. I know you were talking generally about the whole thing, and thought I should clarify what my issue was with the book. Ds is a visual thinker and we have built his language skills utilizing that strength. I have along with the guidance of our SLP also done lots to ensure that his language has been built in as organized a fashion as possible. This makes it so that he can so that he can recall things quicker. Our SLP has always compared it to a filing cabinet. You can just jam everything in there, but it is going to take you a long time to find it when you need it. Clearly it has helped, now I just need to find a way to challenge him to see if we can make any further progress.

 

What kinds of things were they doing for that language organization (lexicon?) over the years? :)

[Guest]

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[Guest]

Understanding Executive Functioning Issues

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues/understanding-executive-functioning-issues

 

And a quote from the link:

"Brain differences: For the most part, executive functioning is controlled by a region of the brain called the prefrontal cortex. Research has shown that people who have disorders, diseases or injuries to the prefrontal cortex often develop executive functioning issues.[2] Experts are using that research to study whether the prefrontal cortex in kids with executive functioning issues works differently than in other kids."

 

The last sentence is the main reason why I have added this quote.

 

Another point worth quoting (from the same link):

 

"Genes and heredity: Kids differ in how they use executive skills. But chances are high that your child uses them in the same way you do. Studies show that the differences among kids are almost completely influenced by genes.[1]"

Edited May 23, 2017 by Guest

[Guest]

Note, both my boys have intact working memories. I use their working memory to build on areas of EF that they need to build on. Every child is different, as is the way their EFs are affected.

[Guest]

Here's another useful link showing some of the strategies she used to make connections between information:
How does visual thinking work in the mind of a person with autism? A personal account
by Temple Grandin
http://www.grandin.com/inc/visual.thinking.mind.autistic.person.html

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Edited August 13, 2017 by Guest

[Lecka]

I am 26% (Kindle lol) through the Play Project book and I love it. Great book!!!!!!

[Lecka]

Oops I responded to the wrong thread.

 

I put Autism: The Potential Within, the PLAY Project Approach to Helping Young Children with Autism by Richard Solomon on my Kindle recently and have just been reading it -- I am not sure where it was recommended now, though.

[Guest]

Oops I responded to the wrong thread.

 

I put Autism: The Potential Within, the PLAY Project Approach to Helping Young Children with Autism by Richard Solomon on my Kindle recently and have just been reading it -- I am not sure where it was recommended now, though.

http://forums.welltrainedmind.com/topic/645842-floortime-how-to-book/?p=7595156

 

ETA: Post #3, if your device doesn't open directly to it.

Edited May 30, 2017 by Guest

[Guest]

Since I mentioned the prevalence of visual learning profiles in autism up-thread, I thought I would mention these resources I came across after this discussion. I posted about them in another thread but I bought the one on Kindle (waiting on the other to arrive) and after realizing what a gem it is, I thought I would include them both here as well, for future reference, since I am really busy and won't be around much.

Visual Strategies for Improving Communication: Practical Supports for Autism Spectrum Disorders by Linda Hodgdon

Solving Behavior Problems in Autism (Visual Strategies Series): Improving Communication with Visual Strategies by Linda A. Hodgdon

From the Editorial Reviews section on Amazon. The reviews are from Barry Prizant (author of Uniquely Human and one of the authors of the SCERTS Model manuals) and Carol Gray (founder of the Social Stories approach and author of several books):

"Visual Strategies for Improving Communication is an essential resource. It is unique in its clarity, practicality and creativity. As a researcher and clinician who has focused on understanding the unique learning and communication styles of students with autism, I enthusiastically recommend this book to professionals and parents at every opportunity. Through this volume, Linda Hodgdon has made a significant difference for children and their families. --Barry M. Prizant, Ph.D., CCC-SLP, Director, Childhood Communication Services, Brown University

What I love about Linda's work (Visual Strategies for Improving Communication) is its durability over time. She has the ability to clarify and support communication with individuals with ASD, while at the same time making information clear and meaningful for those implementing her strategies. I envy her friendly and easy-to-read writing style, and admire her continuing contribution to the lives of individuals with ASD and those who work on their behalf. I refer to Lindas books frequently for new ideas, insights, and inspiration. . .and this one-like the others before it-is a welcome addition to my library! --Carol Gray, Director, Gray Center for Social Learning & Understanding, Creator of Social StoriesTM"

Edited August 13, 2017 by Guest

[AimeeM]

Good Lord. I completely forgot about this post! Thank you all for your replies! I'll try to answer as many as I can individually.

[AimeeM]

Saying this gently, but I think you should reevaluate your decision to forgo ABA. Seriously, this is a child who NEEDS effective intervention ASAP.

I appreciate the input. He is on the waitlist for a clinic that offers in-home OT and ST. 

We were going to try to go the in-clinic route because there are more openings, but considering his brother needs the same services (OT, ST, and PT), but has vastly different needs, there is no way--logistically--that I can swing all of the in-clinic hours spread between the two of them, when considering travel time. None of the clinics are able to stack appointments (i.e. doing the entirety of one child's therapies certain days of the week and the other's child's therapies other days of the week). 

 

All services are in-home here until age 3 (age five for us, since Marco was "in the system" before age 3), but Marco has aged out of that particular program, and there is only one company here (that I've been able to find) that offers in-home past the age of 5.

 

Hopefully our names are coming up on the waitlist -- I received a call from them the other day. 

Edited May 31, 2017 by AimeeM

[AimeeM]

 

You could look at DIRFloortime, if it is accessible to you financially and if it is something you might prefer for him!

I've looked high and low in our area, and can't find anyone offering DIR. The closest I came was an OT who once went to a seminar (or conference) on DIR.

 

I would love to find someone, though. 

[Guest]

I've looked high and low in our area, and can't find anyone offering DIR. The closest I came was an OT who once went to a seminar (or conference) on DIR.

 

I would love to find someone, though.

Aimee, I can't remember if I have linked this for you before:

http://www.icdl.com/DIR/guidelines-for-a-comprehensive-approach

 

You could also look at The Floortime Manual (mine is still on the way):

https://www.stanleygreenspan.com/parents/floortime-manual

 

The training programs are another option. It all depends on what you feel you can handle yourself.

 

I have several of Dr. Greenspan's books and have found them to be really useful resources. I read and incorporate things to my own approach, which is always specific to my kids. I found Barry Prizant's book *Uniquely Human* very inspiring, along with *The Spark* (I read this many years ago). For me, the therapies we might qualify for will be the add-on. What I/we give our boys and the possibilities that we open up for them, that is what will have the greatest impact on their future.

[Guest]

Good to hear the option of in-home OT/ST for both boys is opening up for you :) That is huge!

[Guest]

I have been spending some time going over old resources on Pinterest and purging what I don't want or doesn't represent me/ us. Anyway, I came across this resource for social stories and thought I would link it. I have Carol Gray's book already and have found the social story approach useful, so I thought I would include this link here for anyone that wants a basic idea on how to put together a social story for their own child and unique situation.

 

http://www.myaspergerschild.com/2011/02/how-to-write-social-stories.html?spref=pi

 

This blog has other useful resources as well.

Edited June 1, 2017 by Guest