Re: meltdown

[Guest guest]

How old are your children?

Subject: meltdownTo: aspires-relationships Date: Monday, September 29, 2008, 10:37 PM

Hi Everyone.. I just had a somewhat traumatic experience with my 8 year old AS guy. It's been soooo long since I was around (This is Usarian.. my wife usually deals with this since I'm at work when it happens) when one of my two autistic kids has had an autistic fit. On top of that, my 8 year old never really had them very often or very bad. My other one is younger and he was small when he would slip into it. He had nooo control.. he was already nonverbal at the time, and he hasn't had them in a year or more.. not like this. This time is was the older one. It was awfully severe.. kickign screaming, running around the house in the middle of the night. It had been a very good day for him in every way.. friend came over to play, made a pokemon card trade at school.. got out of doing homework, and other stuff. He started into one at school and calmed himself out of it, then

all hell broke loose at home at bedtime, and not over going to bed or anything rational.. complaining about noise and running and running and running around..

I did the cocooning thing after 40 minutes... hate doing that.. it still took another 25 minutes to come back to me and be human again.

I'm AS.. I have many of the same ticks and quirks as him, but I NEVER had these fits. Heck, HE never had fits like this, and he just keeps getting worse with it every month lately! e says I have been too.. I feel it honestly.. I can feel people's presence lately.. haven't had that in years and years.. I can function throug h it normally, but I feel it..

I don't know.. just.. what is going on?? What is it.. the moon?? Our lives arent stressful right now.. we usually attribute this stuff to stress, but we just had a relaxing week off last week. stayed home and did some nearby day trips. Very relaxing. I don't think I'm bringing stress home from work. School for the kids is going very well. e's not acting stressed.. I just don¢t get it.

Why is the "severely autistic" one getting better and better and the "aspergers" one getting worse (now to a point where he's almost to the point of the autistic guy was when he was diagnosed in the first place..)

This is crazy.

[Guest guest]

e here. ,AS, is 8. , autistic, 5. Don't know if this is any help but we also have a 6 year old, another 5 yr old (twins), and an almost 4 year old. I strongly suspect two of the other ones are on the spectrum but not diagnosed as their symptoms are much more mild.

e

From: Princess

Sent: Tuesday, September 30, 2008 12:43 AM

To: aspires-relationships

Subject: Re: meltdown

How old are your children?

From: Usarian <usarianbluebottle>Subject: meltdownTo: aspires-relationships Date: Monday, September 29, 2008, 10:37 PM

Hi Everyone.. I just had a somewhat traumatic experience with my 8 year old AS guy. It's been soooo long since I was around (This is Usarian.. my wife usually deals with this since I'm at work when it happens) when one of my two autistic kids has had an autistic fit. On top of that, my 8 year old never really had them very often or very bad. My other one is younger and he was small when he would slip into it. He had nooo control.. he was already nonverbal at the time, and he hasn't had them in a year or more.. not like this. This time is was the older one. It was awfully severe.. kickign screaming, running around the house in the middle of the night. It had been a very good day for him in every way.. friend came over to play, made a pokemon card trade at school.. got out of doing homework, and other stuff. He started into one at school and calmed himself out of it, then all hell broke loose at home at bedtime, and not over going to bed or anything rational.. complaining about noise and running and running and running around..

I did the cocooning thing after 40 minutes... hate doing that.. it still took another 25 minutes to come back to me and be human again.

I'm AS.. I have many of the same ticks and quirks as him, but I NEVER had these fits. Heck, HE never had fits like this, and he just keeps getting worse with it every month lately! e says I have been too.. I feel it honestly.. I can feel people's presence lately.. haven't had that in years and years.. I can function throug h it normally, but I feel it..

I don't know.. just.. what is going on?? What is it.. the moon?? Our lives arent stressful right now... we usually attribute this stuff to stress, but we just had a relaxing week off last week. stayed home and did some nearby day trips. Very relaxing. I don't think I'm bringing stress home from work. School for the kids is going very well. e's not acting stressed.. I just don¢t get it.

Why is the "severely autistic" one getting better and better and the "aspergers" one getting worse (now to a point where he's almost to the point of the autistic guy was when he was diagnosed in the first place..)

This is crazy.

[Guest guest]

Usarian and e, have you done any research and considered any

outside factors that are known to contribute to autism? Mercury

poisoning from vaccines and certain fish comes to mind. Also both

aspartame and MSG affect the brain cells in a bad way. Both are

found in so many foods now. There are also foods that help the

brain function such as the omega-3 essential fatty acids from fish.

I only mention these since you what you described came on suddenly

and without explanation. Because of this, I would look at what else

has changed in your circumstances, such as foods eaten, recent

vaccines, new dental fillings, recent pesticide use, a new

prescription medicine, new cookware with aluminum in it, any other

source of heavy metal contamination, etc. It might be helpful to

add some quality fish oil to your daily regimen. Verleen

>

> Hi Everyone.. I just had a somewhat traumatic experience with my 8

year old AS guy. It's been soooo long since I was around (This is

Usarian.. my wife usually deals with this since I'm at work when it

happens) when one of my two autistic kids has had an autistic fit.

On top of that, my 8 year old never really had them very often or

very bad. My other one is younger and he was small when he would

slip into it. He had nooo control.. he was already nonverbal at the

time, and he hasn't had them in a year or more.. not like this. This

time is was the older one. It was awfully severe.. kickign

screaming, running around the house in the middle of the night. It

had been a very good day for him in every way.. friend came over to

play, made a pokemon card trade at school.. got out of doing

homework, and other stuff. He started into one at school and calmed

himself out of it, then all hell broke loose at home at bedtime, and

not over going to bed or anything rational.. complaining about noise

and running and running and running around..

>

> I did the cocooning thing after 40 minutes.. hate doing that.. it

still took another 25 minutes to come back to me and be human again.

>

> I'm AS.. I have many of the same ticks and quirks as him, but I

NEVER had these fits. Heck, HE never had fits like this, and he just

keeps getting worse with it every month lately! e says I have

been too.. I feel it honestly.. I can feel people's presence lately..

haven't had that in years and years.. I can function throug h it

normally, but I feel it..

>

> I don't know.. just.. what is going on?? What is it.. the moon??

Our lives arent stressful right now.. we usually attribute this stuff

to stress, but we just had a relaxing week off last week. stayed

home and did some nearby day trips. Very relaxing. I don't think

I'm bringing stress home from work. School for the kids is going

very well. e's not acting stressed.. I just don't get it.

>

> Why is the " severely autistic " one getting better and better and

the " aspergers " one getting worse (now to a point where he's almost

to the point of the autistic guy was when he was diagnosed in the

first place..)

>

> This is crazy.

>

[Guest guest]

Hiya Usarian, just wanted to have a say on this, my Adam who is now 13 has grown out of his Autism rages, when he used to get them he had them bad! up to 3 even 4 a day! i was told to cocoon him as this was supposed to make him feel safe, well after a few punches from him i decided not to do that again, his dad tried but nearly got his head butted off his shoulders. Adam liked and still likes to cocoon himself by wrapping himself tight in a duvet/quilt and hiding in the large space behind his bed with a colour changing lamp. He told me he felt trapped and suffocated being cocooned by someone but felt safe and comfortable cocooning himself as he can control the pressure! My hubby has many traits and quirks as Adam and like you never had any of these fits of rage Adam got, i wouldn't be surprised

if all the rubbish added to food and the hidden sugars in food has something to do with it, i control Adam's diet and his behaviour has changed for the better. Mind you his rages became more frequent during the early puberty age, 8 to 12yrs was his worst time, obviously his brain wasn't coping with all the chemical and body changes bless him.

Elaine

meltdown

Hi Everyone.. I just had a somewhat traumatic experience with my 8 year old AS guy. It's been soooo long since I was around (This is Usarian.. my wife usually deals with this since I'm at work when it happens) when one of my two autistic kids has had an autistic fit. On top of that, my 8 year old never really had them very often or very bad. My other one is younger and he was small when he would slip into it. He had nooo control.. he was already nonverbal at the time, and he hasn't had them in a year or more.. not like this. This time is was the older one. It was awfully severe... kickign screaming, running around the house in the middle of the night. It had been a very good day for him in every way.. friend came over to play, made a pokemon card trade at school.. got out of doing homework, and other stuff. He started into one at school and calmed himself out of it, then

all hell broke loose at home at bedtime, and not over going to bed or anything rational.. complaining about noise and running and running and running around..

I did the cocooning thing after 40 minutes.. hate doing that.. it still took another 25 minutes to come back to me and be human again.

I'm AS.. I have many of the same ticks and quirks as him, but I NEVER had these fits. Heck, HE never had fits like this, and he just keeps getting worse with it every month lately! e says I have been too.. I feel it honestly.. I can feel people's presence lately.. haven't had that in years and years.. I can function throug h it normally, but I feel it..

I don't know.. just.. what is going on?? What is it.. the moon?? Our lives arent stressful right now.. we usually attribute this stuff to stress, but we just had a relaxing week off last week. stayed home and did some nearby day trips. Very relaxing. I don't think I'm bringing stress home from work. School for the kids is going very well. e's not acting stressed.. I just don’t get it.

Why is the "severely autistic" one getting better and better and the "aspergers" one getting worse (now to a point where he's almost to the point of the autistic guy was when he was diagnosed in the first place..)

This is crazy.

[Guest guest]

Several people recently have written about " meltdowns " in their

" autistic " children, about what " causes " those, and about what has or

has not " helped " alleviate the situation.

In terms of offering solace or support to one another here, these

anecdotes probably are useful. Even very useful.

They *shouldn't* be taken as " real evidence " that some action does or

does not " work " .

Why? Because there is NO _objective test_ for _anything_ " on the

spectrum " (autism-spectrum). It's all very subjective, heavily

influenced by the evaluators' particular biases and training (or lack

thereof).

Since there is NO reliable test for anything autistic, there can be

no *credible* connection between what is claimed to be an " autistic "

problem, and what is claimed to be a solution. Even if it *seems* to work.

If something actually DID work in a particular situation: There's still

no way to generalize from it; and a real possibility of harm through trying.

This *isn't just* academic / scientific / logical spouting. ...It's

just plain ol' *common sense*. Be careful, people. Please.

- Bill, 76, dx AS; ...careful academic

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

Bill,

What do *U* suggest this dad try to help alleviate his child's meltodowns?

just asking..

- Helen

At 10:48 AM 9/30/2008, Bill wrote:

>Several people recently have written about " meltdowns " in their

> " autistic " children, about what " causes " those, and about what has or

>has not " helped " alleviate the situation.

<etc. ... snipped>

[Guest guest]

Helen Foisy wrote:

> Bill,

> What do *U* suggest this dad try to help alleviate his child's meltodowns?

> just asking..

> - Helen

" This dad " is Usarian, I suppose? Can't answer that, 'counta 'cause

I've no way to know what his/their situation *is*, actually.

I am impressed though with how many people, *all* ages and *every*where

are responding to ...*something*.

It's near universal and it's getting worse. It's not just kids, not

even just autistic kids having meltdowns. " Well-adjusted " adults are

having something like. Not just my unschooled observation either. My

friends in the shrinkery trades tell me so.

And kids DO " pick up " on adults' vibes.

Apart from that, and speaking to situations *like* Usarian's:

I'm impressed with how little understanding parents today have about

what's *really* going on with their kids. What seems to an adult like a

" non-stressful " experience for a kid pretty frequently is *anything but*

from the kids' point of view. Consequences always surprise the parents.

Then too, many kids are pretty good at playing their parents like a

violin, to get something they want. So many parents are oblivious to

that possibility: " ...well, not in MY family they don't...! "

Were I giving advice, it'd be to *look beyond* the " obvious " explanation

of autistic behavior. Think!

Convince yourself, if you can, there's *nothing else* to explain your

kids' behavior.

- Bill, 76, AS; ...been there: father, grandfather, great-grandfather

>

> At 10:48 AM 9/30/2008, Bill wrote:

>> Several people recently have written about " meltdowns " in their

>> " autistic " children, about what " causes " those, and about what has or

>> has not " helped " alleviate the situation.

>

> <etc. ... snipped>

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

> I am impressed though with how many people, *all* ages and

> *every*where

> are responding to ...*something*.

> It's near universal and it's getting worse. It's not just kids,

> not

> even just autistic kids having meltdowns. " Well-adjusted " adults

> are

> having something like. Not just my unschooled observation either.

> My

> friends in the shrinkery trades tell me so.

Exactly. I kind of alluded to that at the end of my original post, but for me,

alas, I have no shrinker friends..

> And kids DO " pick up " on adults' vibes.

Yes they do. and this one in particular amplifys any stress in the house...

Something of a feedback loop possibly since he's the only one causing stress

right now.

> Apart from that, and speaking to situations *like* Usarian's:

> I'm impressed with how little understanding parents today have

> about

> what's *really* going on with their kids. What seems to an adult

> like a

> " non-stressful " experience for a kid pretty frequently is *anything

> but*

> from the kids' point of view. Consequences always surprise the

> parents.

Besides all that, my wife reads all of us like a book. She nails it every

single time. I was more expressing my own feelings, and we havent had a chance

to go over stuff, but she probably already knows what the real problem is with

him.

She's doing her talkuing me into stuff thing with hiomeschooling him now. She

had a bad experience with homeschooling (we both did really).. we alwasy figured

it just wasn't for us.. so she must have seen some big things recently that

swung her around like that.

> Then too, many kids are pretty good at playing their parents

> like a

> violin, to get something they want. So many parents are oblivious

> to

> that possibility: " ...well, not in MY family they don't...! "

>

> Were I giving advice, it'd be to *look beyond* the " obvious "

> explanation

> of autistic behavior. Think!

> Convince yourself, if you can, there's *nothing else* to explain

> your

> kids' behavior.

That is one thing we do. We try very hard to do more than assume something is

autism related. We've had to correct school officials for letting my kids get

away with murder since they assume all bad behavior is autism. He definately

has a way of starting out in a plain ole kid-not-getting-his-way, but he can

work it into a frenzy at will, then he loses control and slips across that line.

The weird part is that he.. I don't know how to describe it.. losses his

humanity. He simply isn't " there " inside that shell.. or if he is, it's soo

deept you can't even see " him " in his eyes.

Our neurologist called them seizures, but in a different part of the brain. I

don't want to go the medication route, but if anti-seizure medication, though

trapping him for life to a daily pill in all probability, it may be worth it if

it allows him to function. Not jumping on the bandwagon, but eying it warily.

> - Bill, 76, AS; ...been there: father, grandfather,

> great-grandfather

I truly love the ability to talk to people openly and plainly about this stuff.

To think around these issues and hear people able to identify and share about

their experiences, and debate with some.. at least personal " authority " .. or

experience ..

For three years it's been like.. a family member sees something on PBS about an

autistic kids that plays basketball, and suddenly they think they understand

autism at least as well as us who live with it every day.. or a group of parents

of autistic children crying over how they will do anything (they say " for " , I

say " to " ) their child to " cure " it.

[Guest guest]

Hi Bill

I agree with you that we all have to be careful in what advice and methods we use with our kids during a meltdown, however as a mother i think it is useful to hear of, and learn of as many ideas as we can so we can 'sift' through them and apply what we think may be suited to our child, or what we think our child could cope with, or respond to. What we use as a 'working' coping method today may not work next week or ever again for that matter, but at least it worked once to help our child. We all need as many 'tips' as we can get because of the unpredictability of our kids responses. We can only do our best. )

Elaine

Re: meltdown

Several people recently have written about "meltdowns" in their "autistic" children, about what "causes" those, and about what has or has not "helped" alleviate the situation.In terms of offering solace or support to one another here, these anecdotes probably are useful. Even very useful.They *shouldn't* be taken as "real evidence" that some action does or does not "work".Why? Because there is NO _objective test_ for _anything_ "on the spectrum" (autism-spectrum) . It's all very subjective, heavily influenced by the evaluators' particular biases and training (or lack thereof).Since there is NO reliable test for anything autistic, there can be no *credible* connection between what is claimed to be an "autistic" problem, and what is claimed to be a solution. Even if it *seems* to work.If something actually DID work in a particular situation: There's still no way to generalize from

it; and a real possibility of harm through trying.This *isn't just* academic / scientific / logical spouting. ...It's just plain ol' *common sense*. Be careful, people. Please.- Bill, 76, dx AS; ...careful academic-- WD "Bill" Loughman - Berkeley, California USAhttp://home. earthlink. net/~wdloughman/ wdl.htm

[Guest guest]

>>(I think) Usarian said: She's doing her talkuing me into stuff thing with hiomeschooling him now. She had a bad experience with homeschooling (we both did really).. we alwasy figured it just wasn't for us.. so she must have seen some big things recently that swung her around like that.<<

Just wanted to comment to the homeschool thing. I know quite a few people who had negative experiences with homeschool only to be much more enthused about it now. I think a big thing is society has changed so much that home school is much easier now. People in general are so much more open to it and helpful. There are so many more options for the actual school work... anything from complete curriculums (Sonlight Curriculum is great for this) all pre scheduled out, to internet school (even through the public school system), to just open ended unschooling. The internet is full of support groups, idea groups, free downloadable materials, etc. Also many, many stores will extend their teacher discounts to homeschoolers now. and Nobles, Joannes fabric, Office Depot, and Learning Palace are a few I can think of right off. Also homeschoolers can get all the benefits schools get from Scholastic Books. There are many homeschool social groups now so kids can get together with others but also many homeschool groups for a lot of the traditional activities kids are in. My daughters are in a homeschool karate class, Girl Scouts, and 4-H. In the past they were in a homeschool PE class. Anyway... all that to say that we have so much more opportunity in today's world to make homeschool fun, interesting, and able to encompass all the children's needs. To the extent that I think at this point for many kids it is better for the kid to homeschool, especially when dealing with kids with extreme talents in one or more areas. (But that's my opinion!) I think I talked about that before... Anyway, just wanted to put my two cents worth in about all the possibilities for homeschoolers. Good luck with this,

Jennie -AS homeschools 3 daughters 5, 8, and 11. I started when the 11 yr old was 5.

[Guest guest]

>>Just wanted to comment to the homeschool thing....(etc.)

I think homeschooling is really really good. I was homeschooled when it was still a fight legally, then again later. I have attended rural, suburban, and inner city public schools. I attended tiny private schools and homeschooled on two separate occasions for both primary and high school. I used Abeka book, and many other homeschool materials. My best friend was homeschooled his whole life with Calvert school, and my brother in law was homeschooled with an internet based one. I was a part of a homeschool group with PE, chemistry, and many other group classes and field trips.

But the one thing that homeschooling requires is a devoted parent. Not devoted to parenting or to the welfare of their kids, but devoted to the idea of homeschooling. You have to MAKE it work, and it's hard work to do it. It is exactly identical to running a business from home. You need a plan, and milestones, and control over the child. If the child is not compliant, especially if you have multiple children, this creates a very difficult situation that benefits no one.

..

[Guest guest]

Thanks for your response. I have been considering this option for . I think that since everything else we are trying ( yes, in response to Bill, we have considered these meltdowns are not related to Autism, for this very reason we have made an appointment with the neurologist) is not working. I would like to make the point that this is not the norm for . It has been in the past 6 to 8 months that we have seen the increase. Having spoke to other mothers ( granted we are not doctors) that have AS boys older than mine, they have all with out fail said 8-13 were very hard years on their sons. The point made about the physical and chemical changes that body goes through during this time seems a reasonable explanation to me. We do appreciate everyone's advice. It helps to compare notes with others who have experienced the same things and hear their solutions. It is true that there are strength in numbers. I have already implemented some of what was suggested and have seen changes for the better in our family.

e

From: Jennie Unknown

Sent: Tuesday, September 30, 2008 4:03 PM

To: aspires-relationships

Subject: Re: meltdown

>>(I think) Usarian said: She's doing her talkuing me into stuff thing with hiomeschooling him now. She had a bad experience with homeschooling (we both did really).. we alwasy figured it just wasn't for us.. so she must have seen some big things recently that swung her around like that.<<

Just wanted to comment to the homeschool thing. I know quite a few people who had negative experiences with homeschool only to be much more enthused about it now. I think a big thing is society has changed so much that home school is much easier now. People in general are so much more open to it and helpful. There are so many more options for the actual school work... anything from complete curriculums (Sonlight Curriculum is great for this) all pre scheduled out, to internet school (even through the public school system), to just open ended unschooling. The internet is full of support groups, idea groups, free downloadable materials, etc. Also many, many stores will extend their teacher discounts to homeschoolers now. and Nobles, Joannes fabric, Office Depot, and Learning Palace are a few I can think of right off. Also homeschoolers can get all the benefits schools get from Scholastic Books. There are many homeschool social groups now so kids can get together with others but also many homeschool groups for a lot of the traditional activities kids are in. My daughters are in a homeschool karate class, Girl Scouts, and 4-H. In the past they were in a homeschool PE class. Anyway... all that to say that we have so much more opportunity in today's world to make homeschool fun, interesting, and able to encompass all the children's needs. To the extent that I think at this point for many kids it is better for the kid to homeschool, especially when dealing with kids with extreme talents in one or more areas. (But that's my opinion!) I think I talked about that before... Anyway, just wanted to put my two cents worth in about all the possibilities for homeschoolers. Good luck with this,

Jennie -AS homeschools 3 daughters 5, 8, and 11. I started when the 11 yr old was 5.

[Guest guest]

>>e said: Having spoke to other mothers ( granted we are not doctors) that have AS boys older than mine, they have all with out fail said 8-13 were very hard years on their sons. The point made about the physical and chemical changes that body goes through during this time seems a reasonable explanation to me. e<<

I also had a much harder time when I hit puberty. I think this is typical of all kids but with AS kids perhaps it increases AS type behaviors as well as the standard stuff. (my speculation of course) I do know that even to this day hormones greatly affect my brain and how it works and since kids have less control over themselves than adults it would seem natural that they would have trouble dealing with hormone upheavals. I know that hormone surges can make my reactions much more AS like, I am more prone to some of the standard stuff like repetitive body movement as well as getting stuck on a line of thought or obsessive about something whenever my hormones are out of line.

Jennie AS

[Guest guest]

.... I believe that most parents who come to groups like this have already

given an honest exploration to every possibility, including the one where

they may have inadvertently escalated the meltdown. No parent is perfect!

But they are here because they are not " hiding " the problem.

They are looking for suggestions from those who have BTDT and have

" real world " solutions. Conventional methods have failed them.

They are looking for alternatives to medication, and other questionable

methods sometimes used by the school system and professionals.

So many parents are told " Well you just have to MAKE little ny

smarten up! " Parents of ASD children know that you don't MAKE little

ny do anything when he's escalating, unless he's a willing partner -

unless of course you resort to methods that invite the scrutiny of child

welfare authorities.

ASD children generally DO NOT respond to arbitrary limits placed upon

them while they are escalating. And physical intervention or correction

is like throwing a rock at a hornet's next. Whereas an NT child may at

this point pause to consider that the ante is getting just a bit too

high, for an ASD child in meltdown mode, anything that you put into it at

this point is fuel for the fire. The meltdown is NOT a means to an end

for the child - they aren't doing this to " get something " from

the parents as is mistakenly believed. But indeed, the meltdown can

become an end unto itself - a habit forming routine, until the ASD child

is taught appropriate coping tools.

Bystanders (usually the parents) become mentally exhausted throughout

this experience - almost like they have been the ones who were ranting

themselves for hours on end. They are drained and traumatized by it, and

repeated meltdowns can raise the parents panic levels - they may

experience a PTSD reaction themselves, when they see storm clouds brewing

for another meltdown. And again, professionals look at the wrong end of

the " chicken and egg " syndrome and think the parent's anxiety

is driving the child's meltdown, not the other way around. Parents of

course do need to be able to detach themselves psychologically, and here,

as I will suggest below, a behavioral psychology approach can also help

the parent to be able to control their own panic when their child goes

off like a rocket.

A common, unfortunate experience for parents of ASD children seeking

effective strategies to deal with meltdowns is that they often initially

face the ignorance of professionals who do NOT understand ASDs. They

often find the ball being thrown right back in their court. Parents of

ASD children are told everything under the sun - they are spoiling little

ny, being too strict a disciplinarian with little ny, modelling

bad behavior for little ny, not doing enough for little ny/doing

too much for little ny.

We try to support our members here. They get kicked around enough

" out there. " Parents who get kicked too often tend to slip into

denial, much the way parents of delinquent children do, and so then

little ny gets NO help.

Meltdowns are REAL. And they often happen with spectrum kids in the 8 -

12 age group. My theory, for what it's worth, is that it's pent up

anxiety and over stimulation. By age 8, smart ASD children are already

aware of how they differ from their peers. They want to " fit

in " and they are battling on a playing field that isn't level for

them. Many ASD children (like myself when I was young .. and even today)

are slower at integrating all incoming stimulus, and their little minds

are working overtime.

Even on good days - and especially on good days - it seems, perversely,

the child starts to escalate at the end of the day, and then he/she

blows. And then the parents are really baffled. Very high functioning ASD

children work their hardest to " hold it all in " when they are

in school or outside of the home, but at home, it's a " safe "

place, and often this is where they let it all out. Then professionals

suggest the parents are not dealing with the behaviors appropriately ....

<long sigh> ..... It's better than the old " refrigerator

mother " theory but professionals still don't *GET IT.*

Recalling that spectrum children can become over-stimulated more easily

than other children (ASD adults are too - even to this day, I can only

spend a limited amount of time in a noisy venue before I begin to become

disoriented) even if the stimulation is positive, it will still

eventually put them over the top. The child can't tell the parent what

they are feeling, they can't escape it, so in a sense the ranting and the

running around are an attempt to escape all that built up stimulation.

They need to learn appropriate ways of " venting. " They need to

learn the signs of when they are about to overload, and have appropriate

options for being able to " cool down. "

I do believe that AS are more inclined to meltdowns than more autistic

folks, who would tend to withdraw and " close off " and start to

stim and perseverate as self calming activities. AS tries to cope, but

they overload, and then the lid blows off.

The current methods to help kids deal with this are, in my opinion, not

very helpful. I favour a behavioral approach and by that I don't man CBT

- I mean behavioral psychology - as in applied behavioral analysis. I'm

talking about REAL behavioral analysis, not pseudo ABA as is often used

by para-professionals, or Lovaas style ABA that has been appropriated and

improperly used by para-professionals, and called ABA when it

isn't

I wish I could give more time to this topic as I am a believer of ABA

used in the right way. I'm going to patch together some old links that I

resurrect from time to time and post them here. I am a BIG fan of

behavioral psychology. I believe it is helpful for EVERYONE, and is the

best approach. Just MY opinion of course..... (read on for some links and

2 book recommendations)

- Helen

------------------------------------------------------------------------------------------------------------------------------

Here is a good meta site I found with lots of links on ABA. Created by

Saffran. It's a " must see " site.

ABA Resources for Recovery from Autism/PDD/Hyperlexia

http://rsaffran.tripod.com/aba.html

This is the official worldwide association of Behavioral Analysts.

Their headquarters is in Kalamazoo, Michigan.

http://www.abainternational.org/

Here is a link to an informational leaflet for the public. I think

it's written especially for those considering ABA for children (or

adults) with more profound difficultly than AS, but don't be put off by

that. ABA is for everyone. Many " normal " people with some

issues they want to move forward on ie. fear of dentists, bugs,

embarrassing tics etc. have found that ABA is very effective. ABA is not

ABA unless it's done by a certified ABA specialist. ABA sometimes gets a

bad rep. because of the stuff that is being done in its name which is

not, in fact, ABA.

Behavioral Consultants:

Who Are They and How Do I Find the Right One?

What is a “Behavioral Consultant” and How is This Different From a

Psychologist?

http://communitygateway.org/faq/behavioral.htm

Two EXCELLENT books on behavioral psychology. Written for college

students, very readable for the lay-person ....

This college text has a humorous presentation. But don't be fooled -

despite the " simple " way in which concepts are introduced, they

are presenting complex ideas.

Elementary Principles of Behavior, 4th Edition

W. Malott, E. Malott, A. Trojan

Published in 2000 by Prentice Hall

Some may prefer the style of this one. However, if possible, it would be

beneficial to read the book I recommend above, first, although this one

can be read on its own and be understood clearly:

Behavior Principles in Everyday Life, 4th Edition

D. Baldwin, Janice I. Baldwin

Published in 2001 by Prentice Hall

[Guest guest]

Helen,

I think you are a really good writer, plus

you are stuffed with knowledge.

Perhaps you should write a book.

Even if it was self published and

available online?

Kuddos to you!

Lori

[Guest guest]

Thanks so much for your input. I'm going to hit those links after the kids are all snuggled into bed. Your point about parents feeling emotionally exhausted after a meltdown is so true, especially when there is nothing you can do to prevent it. In this case the crickets outside were the "thing", if there is such a thing, that triggered . Short of hunting down every cricket in TX or at least the Dallas area there was nothing we could do. He was just to worked up to hear any of the distractions or advice that we could give. Unless a parent has experienced these there is no way they can understand. People try to compare them to tantrums a two year old may throw, but these are entirely different. Sometimes all you can do is make sure your child is safe and hold on for dear life until it is over. Last night was one of those nights. With your permission I would like to give a a copy of your message to my sons teacher. I have never heard or read anyone hit the nail on the head the way you have in this posting.

Thanks so much.

e

From: Helen Foisy

Sent: Tuesday, September 30, 2008 5:59 PM

To: aspires-relationships

Subject: Re: meltdown

..... I believe that most parents who come to groups like this have already given an honest exploration to every possibility, including the one where they may have inadvertently escalated the meltdown. No parent is perfect! But they are here because they are not "hiding" the problem. They are looking for suggestions from those who have BTDT and have "real world" solutions. Conventional methods have failed them. They are looking for alternatives to medication, and other questionable methods sometimes used by the school system and professionals.So many parents are told "Well you just have to MAKE little ny smarten up!" Parents of ASD children know that you don't MAKE little ny do anything when he's escalating, unless he's a willing partner - unless of course you resort to methods that invite the scrutiny of child welfare authorities.ASD children generally DO NOT respond to arbitrary limits placed upon them while they are escalating. And physical intervention or correction is like throwing a rock at a hornet's next. Whereas an NT child may at this point pause to consider that the ante is getting just a bit too high, for an ASD child in meltdown mode, anything that you put into it at this point is fuel for the fire. The meltdown is NOT a means to an end for the child - they aren't doing this to "get something" from the parents as is mistakenly believed. But indeed, the meltdown can become an end unto itself - a habit forming routine, until the ASD child is taught appropriate coping tools. Bystanders (usually the parents) become mentally exhausted throughout this experience - almost like they have been the ones who were ranting themselves for hours on end. They are drained and traumatized by it, and repeated meltdowns can raise the parents panic levels - they may experience a PTSD reaction themselves, when they see storm clouds brewing for another meltdown. And again, professionals look at the wrong end of the "chicken and egg" syndrome and think the parent's anxiety is driving the child's meltdown, not the other way around. Parents of course do need to be able to detach themselves psychologically, and here, as I will suggest below, a behavioral psychology approach can also help the parent to be able to control their own panic when their child goes off like a rocket. A common, unfortunate experience for parents of ASD children seeking effective strategies to deal with meltdowns is that they often initially face the ignorance of professionals who do NOT understand ASDs. They often find the ball being thrown right back in their court. Parents of ASD children are told everything under the sun - they are spoiling little ny, being too strict a disciplinarian with little ny, modelling bad behavior for little ny, not doing enough for little ny/doing too much for little ny. We try to support our members here. They get kicked around enough "out there." Parents who get kicked too often tend to slip into denial, much the way parents of delinquent children do, and so then little ny gets NO help. Meltdowns are REAL. And they often happen with spectrum kids in the 8 - 12 age group. My theory, for what it's worth, is that it's pent up anxiety and over stimulation. By age 8, smart ASD children are already aware of how they differ from their peers. They want to "fit in" and they are battling on a playing field that isn't level for them. Many ASD children (like myself when I was young .. and even today) are slower at integrating all incoming stimulus, and their little minds are working overtime.Even on good days - and especially on good days - it seems, perversely, the child starts to escalate at the end of the day, and then he/she blows. And then the parents are really baffled. Very high functioning ASD children work their hardest to "hold it all in" when they are in school or outside of the home, but at home, it's a "safe" place, and often this is where they let it all out. Then professionals suggest the parents are not dealing with the behaviors appropriately .... <long sigh> ..... It's better than the old "refrigerator mother" theory but professionals still don't *GET IT.*Recalling that spectrum children can become over-stimulated more easily than other children (ASD adults are too - even to this day, I can only spend a limited amount of time in a noisy venue before I begin to become disoriented) even if the stimulation is positive, it will still eventually put them over the top. The child can't tell the parent what they are feeling, they can't escape it, so in a sense the ranting and the running around are an attempt to escape all that built up stimulation. They need to learn appropriate ways of "venting." They need to learn the signs of when they are about to overload, and have appropriate options for being able to "cool down." I do believe that AS are more inclined to meltdowns than more autistic folks, who would tend to withdraw and "close off" and start to stim and perseverate as self calming activities. AS tries to cope, but they overload, and then the lid blows off. The current methods to help kids deal with this are, in my opinion, not very helpful. I favour a behavioral approach and by that I don't man CBT - I mean behavioral psychology - as in applied behavioral analysis. I'm talking about REAL behavioral analysis, not pseudo ABA as is often used by para-professionals, or Lovaas style ABA that has been appropriated and improperly used by para-professionals, and called ABA when it isn'tI wish I could give more time to this topic as I am a believer of ABA used in the right way. I'm going to patch together some old links that I resurrect from time to time and post them here. I am a BIG fan of behavioral psychology. I believe it is helpful for EVERYONE, and is the best approach. Just MY opinion of course..... (read on for some links and 2 book recommendations)- Helen------------------------------------------------------------------------------------------------------------------------------Here is a good meta site I found with lots of links on ABA. Created by Saffran. It's a "must see" site.ABA Resources for Recovery from Autism/PDD/Hyperlexia http://rsaffran.tripod.com/aba.htmlThis is the official worldwide association of Behavioral Analysts. Their headquarters is in Kalamazoo, Michigan. http://www.abainternational.org/Here is a link to an informational leaflet for the public. I think it's written especially for those considering ABA for children (or adults) with more profound difficultly than AS, but don't be put off by that. ABA is for everyone. Many "normal" people with some issues they want to move forward on ie. fear of dentists, bugs, embarrassing tics etc. have found that ABA is very effective. ABA is not ABA unless it's done by a certified ABA specialist. ABA sometimes gets a bad rep. because of the stuff that is being done in its name which is not, in fact, ABA. Behavioral Consultants: Who Are They and How Do I Find the Right One?What is a “Behavioral Consultant” and How is This Different From a Psychologist?http://communitygateway.org/faq/behavioral.htmTwo EXCELLENT books on behavioral psychology. Written for college students, very readable for the lay-person ....This college text has a humorous presentation. But don't be fooled - despite the "simple" way in which concepts are introduced, they are presenting complex ideas. Elementary Principles of Behavior, 4th Edition W. Malott, E. Malott, A. TrojanPublished in 2000 by Prentice HallSome may prefer the style of this one. However, if possible, it would be beneficial to read the book I recommend above, first, although this one can be read on its own and be understood clearly:Behavior Principles in Everyday Life, 4th Edition D. Baldwin, Janice I. BaldwinPublished in 2001 by Prentice Hall

[Guest guest]

BLCReports wrote (responding to Bill):

>> And kids DO " pick up " on adults' vibes.

>

> Yes they do. and this one in particular amplifys any stress in the house...

Something of

> a feedback loop possibly since he's the only one causing stress right now.

Yes. I was hoping someone would pick up on that.

Almost every video I've seen ( " ...see what autism DOES to kids... " )

shows the kid's meltdown preceded by something another person is doing

TO the child. Followed by some interpersonal escalation and THEN the

meltdown.

It's the not-unexpected consequence of frustration and powerlessness.

In my opinion.

The classic was in the widely broadcast TV " special " featuring Bill

Cosby. The very wealthy family was pitching their big gift to an

" autism " foundation.

One of their " see what Autism DOES... " segments showed grandmother

*clearly* chivying their kid, screeching at him. He was calm to

start; and she continued until he simply " lost it " . The s just

couldn't make the connection! Still haven't, I think.

[ snip ]

> The weird part is that he.. I don't know how to describe it.. losses his

humanity. He

> simply isn't " there " inside that shell.. or if he is, it's soo deept you can't

even see

> " him " in his eyes.

[ snip ]

I understand that very well, *deeply*, from frightening episodes when I

was much younger.

Check out again the bits on my " Asperger ... and me " page where I

talk about black-faced rage (and similar). It *is* a little bit like

losing one's humanity. For a very brief while, I was just ...alien.

- Bill, 76, dx AS; ...father, grandfather, great-grandfather

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

>> And kids DO "pick up" on adults' vibes.>> >>Yes they do. and this one in particular amplifys any stress in the house... Something of>> a feedback loop possibly since he's the only one causing stress right now.>>Yes. I was hoping someone would pick up on that.>Almost every video I've seen ("...see what autism DOES to kids...") >shows the kid's meltdown preceded by something another person is doing >TO the child. Followed by some interpersonal escalation and THEN the >meltdown.>It's the not-unexpected consequence of frustration and powerlessness. >In my opinion.>>The classic was in the widely broadcast TV "special" featuring Bill >Cosby. The very wealthy family was pitching their big gift to an >"autism" foundation.>One of their "see what Autism DOES..." segments showed grandmother > *clearly* chivying their kid, screeching at him. He was calm to >start; and she continued until he simply "lost it". The s just >couldn't make the connection! Still haven't, I think.

My point was that he stresses himself. We don't bother becoming emotionally escalated along with him any more. It does nothing for the situation obviously. Well.. I say this, and it's true, but, being AS myself.. I escalate MYSELF right along with him sometimes..

What I can't discern from your response is whether you are using the tv show reference as external evidence to something you see, or if you're making the statement that the "outside world" truly doesn't understand that autistic kids escalate by themselves regardless of parental intervention techniques...

Usarian

[Guest guest]

Usarian wrote:

> >> And kids DO " pick up " on adults' vibes.

> >>

> >>Yes they do. and this one in particular amplifys any stress in the

> house... Something of

> >> a feedback loop possibly since he's the only one causing stress

> right now.

> >

> >Yes. I was hoping someone would pick up on that.

> >Almost every video I've seen ( " ...see what autism DOES to kids... " )

> >shows the kid's meltdown preceded by something another person is doing

> >TO the child. Followed by some interpersonal escalation and THEN the

> >meltdown.

> >It's the not-unexpected consequence of frustration and powerlessness.

> >In my opinion.

> >

> >The classic was in the widely broadcast TV " special " featuring Bill

> >Cosby. The very wealthy family was pitching their big gift to an

> > " autism " foundation.

> >One of their " see what Autism DOES... " segments showed grandmother

> > *clearly* chivying their kid, screeching at him. He was calm to

> >start; and she continued until he simply " lost it " . The s just

> >couldn't make the connection! Still haven't, I think.

>

> My point was that he stresses himself.

In my limited experience, AS rarely if ever " stress themselves " wholly

and entirely without an external trigger. ...Something *outside*

themselves, animate or not, which begets frustration and anger at " I

can't make this stop! "

A few emails ago *crickets* were described as what I'd call a

trigger, which in fact led to a kid's meltdown.

*My* trigger, even in my dotage: loud sharp noises, most particularly

those rich in mid-high frequencies. " Brassy " women's voices, especially

in constricted spaces, drive me *right* up the wall; along with very

loud percussive sneezes.

I've never heard of AS " triggering " themselves; and I never have.

> We don't bother becoming

> emotionally escalated along with him any more. It does nothing for the

> situation obviously. Well.. I say this, and it's true, but, being AS

> myself.. I escalate MYSELF right along with him sometimes..

Interesting. I've never read/heard the parent/child interaction

described quite that way.

>

> What I can't discern from your response is whether you are using the tv

> show reference as external evidence to something you see,

Not " evidence " (though I think it is), so much as an example of " Almost

every video I've seen... " = the words I used by way of introduction.

Videos which stand as *surrogates* to live situations I've observed

(and you can never see) which would take pages and pages to describe

convincingly.

> or if you're

> making the statement that the " outside world " truly doesn't understand

> that autistic kids escalate by themselves regardless of parental

> intervention techniques...

As I said above, *I* don't " understand that... " ; and I'd argue I'm not

part of the " outside world " .

Parental intervention, technical or otherwise, was no part of what I

talked about.

I pleaded for parents to !think! about what was going on. Clearly,

some do already. Equally clearly, IMHO, some do not; ...yet.

- Bill, 76, dx AS; ...puzzled

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

>In my limited experience, AS rarely if ever "stress themselves" wholly >and entirely without an external trigger.

I will never ever buy into this line of thinking. AS meltdowns are 100% controlled and controllable by the individual melting down. A small child does not have the discipline or the maturity to have honed the skill yet, or understand his decision tree that adds up to a meltdown. I came to understand the process at around. I have tried to teach my boy, and he has "gotten" some of it, but he's far from "being there".

Boiled down, what I'm saying is that I can't imagine a high functioning AS person melting down unless they have made the decision to do so. I would say that there is something of an "age of accountability" to it with children, however. No grown adult could or should "get away" with that kind of behavior toward other people. We are responsible for our actions and I hope we continue to be in the eyes of both the culture and the law. If we become not responsible for our actions, then Aspergers in particular will have been (incorrectly) accepted as a mental illness as the final word.

Usarian

[Guest guest]

At 06:06 PM 9/30/2008, e wrote:

With your

permission I would like to give a a copy of your message to my sons

teacher. I have never heard or read anyone hit the nail on the head

the way you have in this posting.

Thanks so much.

e

Glad that I could help. <smile!> Yes, you may use the post but

please remove any identifying info. including the info. about our group

since this is a closed, confidential group.

An ASD meltdown is very different form a " temper tantrum. " It's

really hard for people who have not experienced it up close and personal

to understand that this is not " behavior " in a reasoned or

deliberate sense. It IS behavior all right, but a maladaptive response to

being overwhelmed.

Here is another link with lots of GOOD information about dealing with

meltdowns. Tho this is a site about Tourette's, these is often a

crossover with TS and AS, and the etiology of the TS meltdown is very

similar. This site has a wealth of info. and links on how to deal with

meltdowns in home and at school.

http://www.tourettesyndrome.net/

And here is another resource - a site for non-verbal learning

disabilities (of which AS is one.) It also has links on how to deal with

behaviors.

http://www.nldline.com/

I really don't want to throw too much at you at once, but at this

site when you click on " behavior problems " you will come across

a " functional behavioral assessment. " This does have some

value, though I think that after everything I've ever heard and read,

that behavioral analysis is still the way to go. You can look at all the

" why's " of meltdowns until the cows come home but you are still

going to get meltdowns until the child himself/herself can recognize the

warning signs, and have strategies to deal with it (eg. being able to

remove themselves, or self calming techniques.)

best regards,

Helen

[Guest guest]

At 06:37 PM 9/30/2008, Bill wrote:

>Almost every video I've seen ( " ...see what autism DOES to kids... " )

>shows the kid's meltdown preceded by something another person is doing

>TO the child.

The problem is, the producers almost always trot out the " freak

shows " - the most extreme examples - for the camera. And when you

think about it, most normal families would prefer to keep their

challenges PRIVATE. Presumably their kids are going to go out into

the world someday! But these folks, apparently, have no such

reservations or inhibitions about doing this. What you are seeing is

not representative of the average family with ASD, any more then

" Judge Judy " " Geraldo " or any of these daytime shows are

representative of what goes on in the homes of middle America. This is theatre.

I've watched some of these shows I usually come away very frustrated

at the distorted view the public will have about high functioning

autism. Maybe one out of ten times they might actually present

something that is more typical. The BEST EVER show I saw on AS was a

very early one on Fifth Estate. It had Henson, a former ASPIRES

member. I have the tape ... my sis actually ordered it from a media

outlet at the time. But you can no longer get it. It was from the

late '90's. Every now and then you get something that is balanced ..

unfortunately it probably does not sell much advertising, and quickly

disappears into obscurity.

I have witnessed real time meltdowns in homes of friends and believe

you me, though there were things that may have triggered the child,

it wasn't anything that occurred in the immediate.

Now here is a bit of a paradox. On the one hand you are saying that

meltdown is triggered by someone doing something *to* the child, you

are saying that a child does not " self trigger " - but then on the

other hand you are saying: <snip and paste from another post>

" Then too, many kids are pretty good at playing their parents like a

violin, to get something they want. So many parents are oblivious to

that possibility: " ...well, not in MY family they don't...! "

So which is it?

In my opinion, the meltdown is NOT a means to an end. It is THE end,

in and of itself; the child has reached the end of his or her rope

and is struggling to keep from falling into the abyss. It is a

behavior, it is a maladaptive response, but it isn't the same as a

" temper tantrum " - it's not being done for any gain.

>One of their " see what Autism DOES... " segments showed grandmother

> *clearly* chivying their kid, screeching at him. He was calm to

>start; and she continued until he simply " lost it " . The s just

>couldn't make the connection! Still haven't, I think.

You are preaching to the choir here. No doubt dysfunctional parents

do this but they aren't the ones coming to this list for advice.

Folks come here looking for ways to help their child learn functional

behaviors that don't alienate themselves from peers and invite abuses

from their teachers.

I have heard first person accounts of teachers aids watching in

frustration as a teacher escalates a student. I witnessed and

intervened in one instance myself when I was a classroom helper. As a

volunteer I have witnessed and intervened in numerous cases where an

adult was " baiting " a vulnerable child. In " real time " and in lists

like this, I hear all the time from parents who know this is what

goes on in the classroom. The child just wants to be left alone but

the teacher escalates it (eg. tells an ASD child who is having a

headache to take off his hoodie) and the child has a meltdown and the

police are called etc.

Parents have heard enough about the parental role in this. That's

usually the first thing they hear when they approach professionals

for help. The poor parents sit there in frustration as the

professional wastes valuable time telling them everything they

already know about triggers and escalating, but NOT telling it to the

folks who really need to hear it - the school principal and the

child's teachers. They come to groups like this begging others to

tell them " HOW can I get through to my child's teacher? "

>I understand that very well, *deeply*, from frightening episodes when I

>was much younger.

>Check out again the bits on my " Asperger ... and me " page where I

>talk about black-faced rage (and similar). It *is* a little bit like

>losing one's humanity. For a very brief while, I was just ...alien.

Just about all spectrum members here can relate relate to your

description of the aftermath of a meltdown. I recall feeling like

that as a child too. This isn't just a psychological manifestation -

there are chemical changes going on in the brain when this is

happening. It ain't good. It follows that the person being stressed

out and the person who is being stressed out AT would both be

experiencing these effects. New studies show that chronic stress

doesn't only increase cholesterol levels but could also contribute to

early dementia.

Folks not on the spectrum who witness meltdowns find it VERY

harrowing and draining. Some parents say they feel as if *they* were

crying for hours. This is normal reaction to some else's suffering -

especially if this is someone you really care about, like your spouse

or your own child.

Some parents experience long lasting effects from the repeated

meltdowns of loved ones - somewhere between profound, chronic fatigue

and PTSD. One former ASPIRES member said that she practically went

into PTSD herself just recalling the meltdowns many years later. And

this is a woman who had raised many children.

One foster mom I used to know in the northern community I lived in

told me that after her AS foster child was reunited with his parents,

and he came to visit her occasionally, she said she had forgotten how

" draining " it used to be when meltdowns happened on a regular basis.

At the time it's happening, she said, you go into crisis mode and

later you forget and move on, but it surprised her how intense and

draining these episodes were, when she looked back on them later on.

She said that one ASD child required the same energy and attention as

several more children who came from severely dysfunctional homes or

had fetal alcohol syndrome and who had to be watched 24/7 due to poor

decision making.

In order NOT to react to a meltdown, one would have to learn to be

fairly detached and dispassionate. This goes against the grain of

most normal people's thinking though; it takes training NOT to react.

Training, which, let's face it, is not usually available to the lay

person, and I dare say that most of the time it is not available to

professionals who should be knowing how to handle meltdowns, either.

Finally, If the parent happens to be on the spectrum themselves, all

the sensory issues involved in prolonged melting down of their child

is certainly going to affect them too. I think primarily it would be

very painful in a psychic level.

AS or NT, either way, it's very hard for bystanders as they aren't

inside of the minds of those having the meltdown. They have no idea

where this is going or how it will end. They feel responsible to do

.... something ..... but they know not what. It would be like

attending an accident scene that goes on for hours and hours and no

one knows what to do and no rescue vehicles come .. and this happens

several times a week .. and there is no resolution .. no one puts in

stop signs, or puts in street lights to illuminate the intersection

at night to reduce the collisions .. it just goes on, and on and on.......

It's even MORE upsetting to those who don't understand an ASD which

is why when it happens in a public place eg grocery store sometimes

the police are called. Police are called to schools even though

presumably " trained " professionals have been versed on how to deal

with meltdowns. We hear of police " takedowns " and very punitive

measures being applied to ten year olds that would normally be

reserved only for deranged gun-wielding adults! If you think that

sometimes parents get it wrong, the uninformed REALLY react to an ASD meltdown!

This is why families are sometimes " held hostage " of fear of another

meltdown, " walking on eggshells " so as to try not to " trigger " the

child... but in reality the child has his/her own triggers that may

NOT have anything to do with what's going on around them in their

immediate environment, and this is what is so baffling to parents.

In a research abstract that Newland posted years ago, Japanese

researchers found that autistic children experienced what they called

a " time slip phenomenon " where the child may be talking about

something in the present tense and others assume it happened

recently, when in fact it may have occurred years ago. I have

witnessed this with a brilliant, high functioning relative. (I

speculate they " hold on " to events that are confusing, until such

time that they have enough information to come to closure on the

issue) The other thing that these researchers theorized is that even

ordinary events could be traumatic to autistic children. We know that

and have talked about that at ASPIRES in the past.

So yes, maybe something happened hours ago as Lorelie pointed out

(and I say perhaps days, months or even years ago) but the parents

aren't privy to that information and often the child is not able to

articulate what was the trigger, if indeed the child is aware of

cause and effect at all. If they have been bullied on a daily basis

since they entered elementary school, the triggering incident, while

being upsetting to the child, may have at the same time been viewed

by the child as " normal. " Therefore he/she would not think to report

it to their parents.

Or .... they may have no vocabulary to describe what they are

feeling. I didn't when I was young. I could only describe very

instrumental things. I might have talked endlessly about a boy in a

higher grade who wore a striped shirt, but I could not articulate

that I saw him bully younger children and how they reacted or how it

made me feel seeing it. It remained for my parents to try to divine

that information. My mom was pretty good at it, actually. If she

noticed I was fixated on one particular child or incident she would

probe gently until she learned what she needed to know. I remember

she had a bully expelled from school after I witnessed him bullying a

kindergarten girl.

I think we all have a pretty good idea what not to do already. What

parents are asking for is concrete suggestions on what TO do in a

meltdown situation. Do you have any suggestions for them? What worked

for you as a child to help calm you? Others? Ron? ? ....

- Helen

[Guest guest]

i think bill said this:

>In my limited experience, AS rarely if ever "stress themselves" wholly >and entirely without an external trigger.

followed by Usarian response:

I will never ever buy into this line of thinking. AS meltdowns are 100% controlled and controllable by the individual melting down.

me here:an interesting observation, but approach it this way.

are AS meldowns uncontrollable?

I think they are...similar to seizures they are sudden onsets of a sensation of an emotion.

i am prone to audiogenic seizures where certain noises will trigger a meltdown.

I think the term meltdown implies a compariosn to a nuclear reactor and therefore a system is in place to prevent or control this event.

but i think "meltdowns" may convey better meaning of described as seizures. where one can be prevented from happening but once it occurs, then leave immediately. once initiated it cannot be controlled. and despite the best efforts to have a system of checks in place to prevent them, they still happen.

a seizure description may imply a degree of uncontrollability.......and un-preventability.

so meltdowns we can prevent but cant control.

seizures we can neither prevent or control.

you said:

A small child does not have the discipline or the maturity to have honed the skill yet, or understand his decision tree that adds up to a meltdown. I came to understand the process at around. I have tried to teach my boy, and he has "gotten" some of it, but he's far from "being there".

me here:

it may be possible to control an environment to become AS friendly

and therefore prevent a meltdown or external meldown triggers.

you said:

Boiled down, what I'm saying is that I can't imagine a high functioning AS person melting down unless they have made the decision to do so. I would say that there is something of an "age of accountability" to it with children, however. No grown adult could or should "get away" with that kind of behavior toward other people. We are responsible for our actions and I hope we continue to be in the eyes of both the culture and the law. If we become not responsible for our actions, then Aspergers in particular will have been (incorrectly) accepted as a mental illness as the final word.

me here:

we have moved from controlling and preventing meltdowns to a debate about free choice and conciosuness." Im responsible for all that happens to me and for all that i do to you" type argument.

let me sum this up succinctly for you all:

meltdowns can be prevented.

meldowns cannot be controlled.

anyone who tells you different is trying to sell you something.

37 m diagnosd AS.

[Guest guest]

I honestly think I need to fully backpedal here on the meltdown thing. You all

got me thinking.

To be fully honest here, I just had a meltdown a few days ago myself. Total

blowout. Came explosively out of nowehere and felt uncontrollable.

Problem is this: if it's uncontrollable, then my wife should up an leave and I

should bless her for doing so. I should not be around people and cannot be held

accountable for my actions. She and my family should not ever have to put up

with that unpredicability.

That is an unacceptable conclusion, therefore I MUST control myself. If I MUST

control myself, then I must be able to control myself, despite my recent failure

to do so.

BUT if this truly is both completely uncontrollable and completely

unpredictable...

maybe that's the point there. I say it's unpredictable, so it must be

controllable.

Others say it's uncontrollable, but is predictable.

Possibility, it is neither controllable OR predictable.

If that truly is the case, then the cure people and the mental illness people

must be correct.

Ugh.. I'm breaking my head.. somebody fix this logic for me.....

[Guest guest]

Usarian, quick note here ... I say it is controllable but the

autistic spectrum person must learn to be able to recognize the signs

of becoming overwhelmed, and the impending meltdown, and have

strategies to help them deal with it. Removing ones self from the

situation is the first line of defense but not always an option so

they need a variety of alternatives as well. Those close to autistic

person must also learn how to deal with it. These are simple

behavioral techniques, HOWEVER, since they are NOT " natural " - the

" natural " response is a swift, aversive reaction - folks have to be

taught these techniques.

Now.... out for the rest of the morning .. will catch up on rest of

emails later, I promise <grin!>

- Helen 53, self dx'd AS, dx'd ADD

PS - you are pretty bright .. and funny too. I'm still chuckling over

your " pscyho freedom " crack....But ur wife is a SAINT, too! <smile!>

At 10:24 AM 10/1/2008, you wrote:

<snipped>

>Possibility, it is neither controllable OR predictable.

>

>If that truly is the case, then the cure people and the mental

>illness people must be correct.

>

>Ugh.. I'm breaking my head.. somebody fix this logic for me.....