perseverative behavior

[lmh2402]

i'm wondering if anyone else can share their experiences with their DC and perseverative behavior?

i will admit to being "ignorant" and telling people for a long time that DS was "obsessed" and/or "fixated" on octagons.

yes. octagons.

i have since been schooled by EI that the proper term is he "perseverates" on them.

a lot. and in recent months he has expanded his “extreme interests” to include the alphabet.

he talks about these things all. the. time.

he wakes in the morning and we hear him over the monitor saying, “big yellow ‘chool bus. big RED octagon!!” “big blue ‘chool bus. big RED octagon!!” and on and on. every color he can think of.

then he sings the alphabet a few million times. then he calls to be gotten for the day.

his idea of coloring or playing with chalk/crayons is to dictate us (me/dh/my mom/nanny) to draw octagons. and/or buses with octagon. and to write out the alphabet. over and over. in every color.

he gets very, very upset if we do not oblige. it has resulted in very limited time with crayons/markers/chalk.

he loves his fridge letters. but his idea of play is to mess them all around and then beg us to line them up in the proper order. over and over.

sooo…my questions are:
1. if you dealt with / deal with peresverative behaviors, how do you successfully redirect? do you cold-turkey things – meaning I should remove all references to letters (for example, get rid of fridge letters, get rid of all his alphabet books…he looks at them all day long and asks for me to read them multiple times each day, don’t submit to writing out the alphabet on paper, etc, etc)? or is there a more gradual way to approach it? b/c i really fear that cold-turkey would be very harsh and he might really flip out. EI has really not been able to give me good/helpful suggestions for how to work with G on any of this

2. have there been any therapy avenues that have helped your DC?

3. have you seen improvement with age?

I can’t even think of other questions right now…other than…please share your experiences.

thanks

[elliput]

I indulged DD's perseverative behaviors. At the time, all I knew was that DD was a bit behind verbally and her behaviors were things she did do to communicate. She would want us to go through the alphabet by writing the word and then a drawing picture on the DoodlePro. Starting with "A", she would usually ask for apple or airplane to be written out and then the picture drawn. She would inspect it and then move on to "B", "C" etc through the whole alphabet. Sometimes it was quite trying.

I can definitely say that with time, the behaviors do fade and/or change. Some of the things DD fixated on were given up cold turkey and some were given up gradually. I just looked at her behavior as her way of internalizing/learning.

[Gena]

DS has had and still has perseverative behaviors. To a certain extent, we accept them as part of our daily life. (And we usually refer to them as obsessions or fascinations.)

When he was very little (around 2ish), it was certain shapes - mostly pentagons - letters/numbers, and certain motor activities like spinning and opening/closing cabinet doors. His letter obsession developed into hyperlexia, which has been one of his great gifts.

Over the years, perseverative behavior has centered around: trains, trucks, auto insurance commercials, perscription drug commercials, singing the alphabet backwards, counting to 9000, constantly humming the "Thomas the Tank Engine" theme song, Roman numerals, writing lists and/or mind map diagrams, calendars and dates, echolalia - to name a few. They crop up, last a while and then fade as he develops new fascinations. Some of them crop up again and again.

His current fixations include constant humming, list making, calendar/date fascination, obsessions with certain types of commercials, and compulsive reading.

It's important to understand that these behaviors serve a purpose. They might be stress relief, entertainment, an attempt to process information/expereince or an attmept to engage us socially. You can't just take away everything that triggers perseverative behavior. The child will either protest strenuously or just find something else to fixate on. IF you want to stop the perseverating behavior (and that is a big IF), you need to figure out what need it meets and then determine a different way for that need to be satisfied.

We do not try to eliminate perseverating behavior. However, we also do not allow it to run rampant. We put limits on it - certain times of day, certain areas of the house. We will tell DS, "We are not talking about (Thomas/car insurance/calendars) right now. Right now we are (eating dinner/working on math/listening to music). First we do (desired task), then we can do (perseverating behavior) later. "

Also. some of DS's perseverative behavior such as the calendar fascination and list making are actually useful skills. So we and his teachers openly encourage these and teach him how to use these interests in ways that increase his ability to function in his environment. For example, DS now manages his own schedule on his iPad and we are able to use this to help him prepare for upcoming changes to his routine.

[lmh2402]

thank you both.



i feel so lost.

and i'm starting to feel really sad. and scared.

i don't understand what, if anything, is going on with DS.

i wanted to put a stop to the perseverating b/c it feels unproductive. it feels like he/we get caught in this loop and it precludes everything else. it makes "life" less fun and interesting for him...and for us.

in my mind - a big blank expanse of paper and free reign with crayons or markers would be a field day for a kid. but DS only wants us to write the alphabet. he will scribble only as a one-off piece of bartering, "if you draw me a picture, than i will write the alphabet...again."

same with driving in the car. rather than enjoying what he's seeing. instead he is just flipping out that he hasn't seen a school bus. and when he does see a school bus, it isn't out of sight before he is crying for more.

or planes. or trains. or today was "orange trucks." no other color. just orange trucks would do.

i've given only a few examples of the ways and things that capture his attention. but like you guys said, there is a decent sized list. it rotates. things come in and out of favor. though octagon has been #1 since he was 14 months old. i kid you not. people used to stop us and ask, "did he just say octagon?"

i would love to try and limit it to certain times or places, but i'm not sure he's old enough.

i did some reading on it last night. not sure why i waited until now to google it. but it seems like a common behavior in kids on the spectrum.

i am so. confused.

my heart aches b/c i have been trying since he was 11 months old to figure out if there was something i could be doing for him. some sort of services he needed or would benefit from.

my head fully understands that there are no definitive answers. that it makes sense for there to be uncertainty.

but it feels SO uncertain. we've met with so many regular pedis. one developmental pedi. EI in two states. and half the people tell us he is totally typical and there is nothing wrong with him. and the other half says he's "off," but can't put their finger on exactly how or why.

the developmental pedi said off the cuff when we were leaving her office that it would be a really good idea for him to be in preschool next year. and that she "thinks" for now we should pursue "a regular program," but following the speech eval she is recommending...we will maybe want to look at a "special needs program."

i was STUNNED. literally so stunned i couldn't speak.

i just gathered our stuff and left.

why can't anyone tell me what...IF (something)...is wrong with my son.

sorry. i know this has nothing to do with the original post.

i just needed to write it down.

thanks.

[egoldber]

I just wanted to say

[Katigre]

(((((((((hugs)))))))) I just want to say this - no matter what is/isn't wrong with your son, he is still the same child you know and love. A label/diagnosis/therapy doesn't change that (it just helps give you additional support and tools to support your child).

[Gena]

Hugs.

It's very very difficult when they are so young and you are trying to figure out what is going on.

I want to respond to a couple of things you said.

i wanted to put a stop to the perseverating b/c it feels unproductive. it feels like he/we get caught in this loop and it precludes everything else. it makes "life" less fun and interesting for him...and for us.

DH and I learned that we had to change our assumptions of what is "fun" for DS. We used to take him places like the zoo or the children's museum and he did not respond in ways we expected. Instead of looking at the animals at the zoo, DS would spend the whole time fixated on the signs. At the children's museum, DS would want to spend the entire time at one or two exhibits that indulged his sensory seeking tendencies. No matter where else we tried to take him in the museum, he kept leading us back to these one or two areas and cried when we tried to show him something else. These situatations made us very sad and frustrated. Eventually, DH and I came to understand that the "fun" we wanted him to have did not match his own expereince of what is "fun". We learned to allow him his own fun, and how to gradually introduce other activities that we thought migt be fun. We gradually learned to understand things from his perspective and started to discover what is fun about the things he likes.

in my mind - a big blank expanse of paper and free reign with crayons or markers would be a field day for a kid. but DS only wants us to write the alphabet. he will scribble only as a one-off piece of bartering, "if you draw me a picture, than i will write the alphabet...again."

THIS is great. Do you realize what this means? Your son has currency! Are you still looking into places that do ABA? An ABA therapist would be all over this! You can use this to teach different skills. You can start with "You try X, and I will write the alphabet" and move to, "You try X, and I will write 5 letters. Want to earn the next 5? You need to try Y." Work your way down to "Try X to earn a letter."

same with driving in the car. rather than enjoying what he's seeing. instead he is just flipping out that he hasn't seen a school bus. and when he does see a school bus, it isn't out of sight before he is crying for more.

or planes. or trains. or today was "orange trucks." no other color. just orange trucks would do.

This is hard, especially while you are driving. Can you take photos of all the various vehicles he likes to look for and put them in a little photo album? Keep the album in the car, so he can look through it while you drive. Then you can say, something like, "I don't know if we will see an oragnge truck, but there are pictures of orange trucks in your book. Look for the pictures of the orange trucks."

I understand the uncertain feelings. I understnd how scary and confusing it is. Is there an ASD support group in your area? It can eb a wonderful help to sit in a room full of parents who are facing the same issues. And to meet children of differnt ages who are at different points of the spectrum. You do not need to have a diagnosis to go to a support group; the parents there will understand where you are now.

[JTsMom]

DS went through a "flying octagon" stage for a while- we should get them together.

I go back and forth on how to handle these types of behaviors, so I make a call on a case by case basis. Sometimes, they are relatively benign, and I pretty much let him have at them. Other times, they can be dangerous, destructive, or drive me out of my mind, so then I either stop or limit them. I agree that there is not much you can do about trying to stop them altogether though.

One thing that has helped me a lot is using a timer, for this stuff, and for other stuff. We can talk about X for Y mins, but then we need to do Z. The timer is hard to argue with, and since it's not coming from you, he might go for it. I recently bought this one:

http://www.amazon.com/Time-Timer-LLC...1344635&sr=8-1

It's a big hit around here.

Therapy- I don't know. It depends on which day you ask me. lol Some days I think, "Wow! We're getting somewhere! Something is clicking!" Then the next week I'm crying b/c he kicked the doctor, and went through Target screaming about toilet paper or something.

OT has helped with certain things. DS1 used to not tolerate swinging at all, and now he somewhat enjoys it. That translates into less panic over certain real-life situations. He used to not be able to handle cash register noises and would interpret normal sounds as being crazy loud. Now, he does much better with that sort of thing- I attribute that to Therapeutic Listening.
His fine motor skills have improved- OT again. His speech testing scores have improved, but his major issue is with pragmatics, and that's still challenging. His current ST is working with him on certain skills- it's slow, but there is some improvement. I've worked with him at home countless hours using techniques I learned watching his therapy sessions- that's probably the major thing that has helped. Currently, we're doing Neuronet, which is an interactive metronome type program, and I'm seeing improvement in processing multiple things at once. Some days I think Brushing Protocol works, other days not. Little sensory diet things- like playing in a bin of rice, weighted blankets, etc. help.

But honestly, overall, things are still really rough here. Like with any child, the stages change, but there are always challenging aspects and rewarding aspects.

It took me a long time to figure out there aren't always answers. I used to think that having a specific diagnosis would help- it hasn't. I am constantly trying to figure out the right questions to ask, b/c I'm convinced someone knows what's going on with my child and what I should do about it, but if that's true, I haven't found that person yet.

I wish I could tell you that it will all get easier once Y happens, but that hasn't been my experience. I will say though that if one thing in particular is important to you, you absolutely can work on it and see improvement- it's not like everything is hopeless or anything.

None of us have all of the answers, but we're certainly here for you whenever you feel like venting. One more .

[lmh2402]

(((((((((hugs)))))))) I just want to say this - no matter what is/isn't wrong with your son, he is still the same child you know and love. A label/diagnosis/therapy doesn't change that (it just helps give you additional support and tools to support your child).

thanks, all

the bolded is precisely the reason that i'm looking for an answer. i definitely know it doesn't mean or make my DS any different from the kid i love to pieces every day

i just feel like we are adrift without any anchor and really so little support.

our EI services have been so not all that helpful.

i spoke with our case manager following our appt with the developmental pedi. and she was totally baffled. said she would call me back. she called me back today. a full week later. and said, "it makes no sense for him to have a speech eval. speech therapists have nothing to do with evaluating pragmatic use of speech. all a speech therapist is going to assess is whether he's speaking clearly and/or understanding what you're saying."

does anyone know if this is true?

i was so irritated. i don't know why we're doing a speech eval! we're doing it b/c the doctor said to. so why are you questioning me like i'm some sort of idiot?!

anyway, thanks again.

ETA:

Instead of looking at the animals at the zoo, DS would spend the whole time fixated on the signs.

gena, thanks for sharing this. you have no idea how much better it made me feel! when we moved in sept i signed us up for a gym class at the ymca. hoping we could meet some other moms and kids.

however. instead of doing the "gym stuff," that all the other kids were doing. like running and yelling and throwing balls. my son was pushing people off the foam mat b/c they were covering up the letters and numbers.

and while others were jumping on the trampoline, he was reading the letters on the warning sign.

needless to say, we did not have much mingling with other kids and moms time. and i did not meet anyone in that class

[Gena]

i spoke with our case manager following our appt with the developmental pedi. and she was totally baffled. said she would call me back. she called me back today. a full week later. and said, "it makes no sense for him to have a speech eval. speech therapists have nothing to do with evaluating pragmatic use of speech. all a speech therapist is going to assess is whether he's speaking clearly and/or understanding what you're saying."

does anyone know if this is true?

I don't know where your case manager got the idea that speech therapists don't evaluate pragmatic language. After all, SLP stands for Speech and Language Pathologist.

The problem is that it is very difficult to assess the pragmatic language of a child as young as your DS. There are no formal pragmatic language tests that are standardized for kids under the age of 5 or 6. So it's possible that your case manager is simply unfamiliar with this type of testing, since her clientele is generally too young for it.

However, a good SLP should be able to do a full eval on a young child that includes both formal and informal assessments. The formal testing could include expressive language, receptive language, and articulation. The informal assessment could consider the child's communication style and intent. Both formal and informal testing can be helpful, even if a child appears to hsbe no obvious speech and language delays.

I hope that helps.