need for ritual/sameness fading... | Autism PDD

...but still there. Sometimes I forget how bad it used to be - an hour long ritual that we had to get 'just right' or we'd be for screaming tantrums - having to respond to them using specifically worded scripts, and if a mistake was made, we'd get a tantrum. Freaking out if they got the wrong plate or the wrong utensils or if their food was cut the wrong way - you get the picture.

All of that is gone. It's been fading fast over the past couple of years, but it's still there.

Abigail, came out of her room sobbing and yelling for help at midnight last night. What was wrong? There was a puzzle piece on her floor.

Evie has a similar episode a few nights ago when she discovered the cat had come into her room and jumped on her bed (they sleep with their doors closed, so the cat never goes in there). You'd think that she rolled over in her bed and discovered the girl from the Exorcist laying next to her, the way she freaked.

How come all of the rituals, which used to be so pervasive, have faded, and yet these little vestiges remain? We actively resisted them capturing us with these patterns before - they used to have us running through new rituals before we even realized it - we had to always make sure that we just didn't do the same things exactly the same way - but even if we did, they'd still try to manipulate us into some sort of persistant pattern. This has worked for the most part, bedtime routine is down to a simple good night (though Abigail MUST say goodnight FIRST and will only do so once she's under her blankets - or it's trouble) and in general, we don't even think about this aspect of their autism much anymore - but - does it ever go away completely? How come the remaining rituals- resistence to change seem to be oriented around their bedrooms? Could this be typical kid fears of the dark - just manifesting as this need for consistency in their rooms, at night?

Should we continue to resist being captured by these rituals, or would you just allow them, as long as they do not start becoming pervasive again?

fred39276.863599537

Fred - This is really interesting because I kind of noticed the same change with my son over the past year or so, although he never has really had the "extreme" level of need for sameness as it appears your girls did. However, there was this need for certain things to happen at certain times....or if we did something that he enjoyed as part of the routine, he'd want it done every night (for example a kissing routine that involved kissing the lips, then a butterfly kiss, then an eskimo kiss, etc). However, he's become much more flexible and for the most part doesn't make many demands on us anymore during bedtime. We still stick with a general routine (i.e. bath/shower; they choose, brush teeth/hair, stories, prayers then sleep), but there is limited ritual now around those activities.

Ironically enough it was my NT daughter who really gave us fits around age 3. She had to have her stuffed animals a certain way in her bed, couldn't have any toys in the wrong spot, door had to be open a certain amount, etc. She's also loosened up a bit, but now seems even more rigid than my son. So, some of what you're experiencing my simply be "typical" behavior not necessarily related to the ASD. I think all kids need some kind of familarity at night. It's a big transition for them, and it helps if things are predictible.

It's great your girls are maturing and becoming more managable. In know with twins they can sometimes feed off one another and certain behaviors can be exacerbated because of that. Isn't it nice when things start to get easier! We've had some pretty dark period ourselves; I'm just glad the first 5 years are behind me.

I would probably keep fighting the rituals to some degree. Maybe once every 10th time change it up. Since you've worked on it so much they probably did what my ds did and developed a tolerance for change. He still has a few lingering rituals. The worst one is driving past a certain persons house on the way home who lives a few blocks from us. If we're coming from that direction he always wants to drive past. Every once in a while we tell him he'll get a special reward it he doesn't cry about not going past it. I know that is technically bribery but I think it's working out fine, he is able to handle that situation. If he doesn't agree to try it it's ok. It helped that the first few times a therapist did it. Can someone else (babysitter) put them to bed. Maybe if they don't know the routine the girls will be more accepting of a change.Heh, growing up was a huge routine, luckily, many familes now days r routine oriented, and so my little problem did not get noticed growing up, unlike your kids, most likly because my parents were miss informed.

I thrived on routine, but did not freak when it was broken, instead i would be utterly lost, total confusion, i was brought up to be, well... i guess tough, my parents were loving, but growing up in the 80's their was little info on autism so they were harder on me then parents of afflicted children r today, so i learned to accept the slight changes in routine (IE new school year, 1st day, having to turn tv off to go with my mom for a drive when clearly it was TV time ect...).

It was small changes, but when i moved things were hard for a while, i needed a whole new routine, i cant stand unpredictability, and moving may have been the best thing for me, around the age of 8, so i can learn and adapt with the world.

Your kids probably hate change because they need to be able to predict the future, sounds crazy yes, but even to this day, the reason i say that is because i thrive on predictability. It was Ben Franklin who said somethin like an insane person expect different results out of the same circumstances. To this day I plan ahead, a whole week, i know on weekends i need to be spontanious as their r random parties, or camping trips that come up, but mon-fri i have work, which means i wake up, stay home, have no fun and go to work, and if someone comes over or i am forced to leave my house to do somethin on a mon-fri im screwed up all day, i hate it, and the ppl around me r receptive to it to because they will wonder why i pace, or look nervous, i hate it, i need constant structure, at least mon-fri, i thrive on scedualing, and your kids im willing to bet will be like me, maby more or less rigid, only time will tell.

Its not a bad thing, im very punctual, i keep track of time well, im on time or early for appointments and can time things perfectly, taking a variety of veriables and using them as part of the equation that i need to figure out what time things need to be done.

Breaking routine ruins my day, the best thing i can tell ya is for big changes (moving, new school, friends or family over) tell them in advance, for the small stuff, well... they need to understand that these happen, and without warning. For me HFA is a blessing and a curse (im more aspie now i belive, but never lost my HFA label from childhood). I constantly worry about the future and because of this am more (not trying to gloat) successful then my other 24 year old peers, as i own a house at a young age, but bad because i dont have a ton of friends or ppl i like to hang with, am considered eccentric and some stay away, or sometimes i insult ppl without knowing.

It sounds like your kids will do better then I did, childhood was hard for me, but it can be easier for your kids because u have the information that my parents lacked, so i had to, half the time, just learn things the hard way, where as u can see the sighns and provide the help i or others my age could never have received, i cant beleive im as successful as I am, but fear ill never acheive beyond what I have now

sorry for rambling on...

As Tzoya put it, autism is like riding a roller coaster backwards. It's nice to know when the bumps and curves are coming, so predictability is helpful.

I once read a book by Brazelton about how toddlers are strugging to be "big kids" all day long, but can't sustain it all day, and revert to being more babyish at home later in the day. I believe this is true of all kids, also older kids and special needs kids.

It's great that you're seeing such a dramatic change in the girls' rigidity.

Woodsman25 Again I really like your feedback! Really helps to know we are all on the right track with out kids. Fred. Yes my son also was really routine needy. Now he copes much better. He still has him moments though over little things. We try not to keep too strong of a routine at home. Just your basic loose household flow. He's also getting better with things like to doctor, dentist, haircuts etc. His stomach is on an 11:30 luch schedule and we can't break it. Thankfully school has lunch at that time. As long as things are onward and upward I think we're all doing really well as parents.

woodsman, sometimes I wonder if knowing what we know (as parents) is really a good thing or not. There's something to be said for letting the kid go out there and have to adapt if they're going to do well in our culture and society. Sometimes, I think I try to sheild all of my kids too much. Their mother is much better at pushing them out there and letting the sink or swim (and they end up swimming more often than not). And you are doing exceptionally well - home ownership at 24 years old is awesome. I didn't own my first house until I was nearly 30.

Sarah is starting this at a late age of almost 7 and I see so much of this in my husband that it's weird...he loses his mind if I change anything in the house or move something...I dont want Sarah to be like this as an adult so I and her teen sister have no problem letting her know that life is ever changing and she cant expect it to stay the same..I fear of all the potential friends she may get that will leave her the minute she pushes her rules on them

Good luck:)

I LOVE the silliness, Mamakat!

Best part is ... I think it is good for the PARENTS, too!

[QUOTE=MamaKat]

On the advice of my dev. ped. (who is also a parent to two ASD boys), I
started a campaign of silliness, "wrongness", and downright
unpredictability in our home

I started gently...
I pretended to mess up our pattern and laughing about it.

At first, these things were very upsetting to J, and I kept it fun and simple

It has paid off in spades. He has learned about jokes, silliness, and how to deal with the "unexpected" He can still get panicky sometimes, but he
has also developed an ability to laugh about it sometimes.

I over exaggerate responses to things like the puzzle piece on the floor,
sometimes breaking into "full emergency response" with sound effects
and lots of silliness. I chase him around with it saying things like "watch
out for the puzzle piece!!!" A year ago these type of antics would have
been unimaginable and not very respectful. But I built it slowly, and now
he really gets it. At the end of all the hoopla, we usually talk a bit about how he could cope with the offending puzzle piece in the future, and
makes sure he knows that his "big feelings" about the puzzle piece are
okay. I show alot of empathy for his problem and laugh about it at the
same time.

It was a practical and knowing suggestion from the ped., and it has
worked for us as well as being a fun way to help my son deal with the
unexpected.

[/QUOTE]

NOW this is a method you don't learn from books. It takes one who has done it to know it. In this case, from the Dev. Ped (with 2 ASD boys) to MamaKat.

To everyone out there still struggling with rigid routines... A BREAK is GOOD for our own sanity.... BUT HOW WE DO IT is equally important, lest we provoke an even greater reaction....

But yet as woodsman says it, routine is good.... but exposure to flexibility is eventually rewarding...

P.S. MamaKat, I hope you don't mind me highlighting your post. The bolded ones btw are the same things I do with my boy....especially the "emergency response" ... On the advice of my dev. ped. (who is also a parent to two ASD boys), I
started a campaign of silliness, "wrongness", and downright
unpredictability in our home.
Obviously, we have a stable homelife, and a general routine to our days,
but I'm talking about the small ways I interact with J.

I started gently by telling him to come outside because it was raining
jellybeans.
I told him we were having sticks and leaves for dinner.
I pretended to mess up our nightly, "Nighty night, night night night." with
messing up the pattern and laughing about it.

At first, these things were very upsetting to J, and I kept it fun and simple

It has paid off in spades. He has learned about jokes, silliness, and how
to deal with the "unexpected" He can still get panicky sometimes, but he
has also developed an ability to laugh about it sometimes.

I over exaggerate responses to things like the puzzle piece on the floor,
sometimes breaking into "full emergency response" with sound effects
and lots of silliness. I chase him around with it saying things like "watch
out for the puzzle piece!!!" A year ago these type of antics would have
been unimaginable and not very respectful. But I built it slowly, and now
he really gets it. At the end of all the hoopla, we usually talk a bit about
how he could cope with the offending puzzle piece in the future, and
makes sure he knows that his "big feelings" about the puzzle piece are
okay. I show alot of empathy for his problem and laugh about it at the
same time.

It was a practical and knowing suggestion from the ped., and it has
worked for us as well as being a fun way to help my son deal with the
unexpected.wow - fantastic responses all around, folks - thanks!We resist all the ritual things with our son. We change up who takes a bath first, if his shirt or pants go on first, who puts him to bed, where he sits at the table/car, toys that are out to play with and basically everything I can think of. I consciously change up or daily routines/places we go and the above things etc to purposely make him deal with changes in his environment. Our developmental pediatrician told us it was best to do so. He's come a long way in his coping skills and what used to be a two hour meltdown is simply me telling him no we're going to do this or do it this way then he looks at me and I say "it's ok" hug him and we move on with no fuss at all. It was so hard in the beginning but so worth it because I was beginning to feel like a hostage the other way.

To me the self directed ritualism seems to stem from an intrinsic motivation rather than an external action of a parent based routine. If you have limited ways of understanding of what�s going on and what�s going to happen next, and can�t ask questions, creating a self directed routine is reassuring. It minimizes the need to be alert and the anxiety of what�s next.

It sounds like the catalyst of change is likely your girls greater understanding of language and the world in general. They could be more aware and understand more of the �what�s next.�

But, you may encounter self directed rituals at times when they are unfamiliar with an event, object, or person etc. There is no consistency to night it is very abstract and internal.

I would look at it from the perspective of anxiety and deal with it from the perspective of �white knuckle� coping. (someone else may be able to explain this better but I'll try) For example the ritual represents say a middle lane on the highway. There is a lane on your right and left which you can�t see well at any distance because fog quickly cuts down your visibility; cars and trucks are barrelling by. You manage to get into the turnoff lane and back home. You are thrilled and relieved you survived. Whatever method you used that kept you safe is likely the one you will use again. Unfortunately, you thought traffic flow in lanes corresponded to turning the radio knob but it worked! Now this is how you think you should drive. So the second time on the highway you're directing your wife to turn the radio knob so you can change lanes.

The pp suggestion of fun and silliness is great because it presents the idea that there are other options and conclusions to the same situation without being threatening. As well it can help minimize the anxiety that comes from the expectation performing in an unfamiliar way.