Growing Old With Autism

[Jamies Mommy]

Absolutely heartbreaking...
http://www.time.com/time/magazine/article/0,9171,1898322,00.html

[RathyKay]

I've been wondering what happens when this generation grows up. Mr. Kay and I are pretty sure Tom will live with us until we're unable to care for him and ourselves.

[peglem]

Prot posted this same article yesterday. My response:

Thanks, Prot. I realy felt myself identifying with the situation in that article. Already, at age 14, I'm having great difficulty finding help for my daughter (a Lovaas flunkie). Every program or group is geared toward the younger or the more abled.

Funny how the peer reviewed, scientific research on ABA makes little mention of those for whom it doesn't work...or it would be funny if I didn't feel so victimized by it.

[Jamies Mommy]

Jamie turns 13 next week so it is definetly something thats on my mind.

[milivica]

The fear of what Vince would ever do without us caused me more grief than anything else about autism, dominated my thoughts always. Fearing what his existence would be without us, his quality of life...would he have any? He had little enough quality even with us, he had existence walking around with his tree branches and his fascination with pouring water.

I love the saying Lovaas flunkies, yeah Vince being one of them. I remember swearing by ABA, believing if he could act nt he'd be ok. It was a different time then.

Really urks me ABA is still being used for autism, it's like using ABA for bipolar or depression or OCD, comply comply comply...act this way, good boy, here's your reward, act this way and you are this way - not.

If I had a wish I could actually make come true, it would be to take every adult autistic, as well as every young autistic and their families into some huge community of loving RDI caregivers and poof in a year they'd be on their way to a new beginning, on their way to the life and choices in their life they deserve.

[peglem]

I think maybe, for some kids, ABA may be a sort of catalyst to get them back to interaction. If done properly (and like RDI, it has evolved into a program that is less discreet trial and more integrated into the environment), I can see how kids would start to feel like they were more competent, especially if you can get them to the stage of being not prompt dependent.

That being said, I've heard lots from autistic people about how ABA turned out to be a very negative thing for them. I've never heard from an autistic person who had anything good to say about ABA...makes me wonder if they are out there.

[milivica]

I never had ABA officially, but it's definitely what was done when I was little...seems to come naturally to nuns, lol. Also when in the institutions, it was all about learning to act 'normal' so you could get out. So, ABA did help me in the beginning of everything...getting jobs, meeting people, etc...but only a few minutes into my job or new person I'd met it all came crashing down around me, cause I couldn't do all the 'gray area' stuff, the majority of everything.

I don't hate ABA believe it or not, I just don't see how it helps a person with gray area stuff, or reading body language on that changing moment to moment basis like what happens in real life. But I did buy into it, hook line and sinker at one time.

I'm sure it's good for some things, maybe getting a kid to bring up their report card grades or something, I dunno. I'm sure there's aba in just typical parenting, but not 40 hours a week of it.

[roadracer]

I never had ABA officially, but it's definitely what was done when I was little...seems to come naturally to nuns, lol. Also when in the institutions, it was all about learning to act 'normal' so you could get out. So, ABA did help me in the beginning of everything...getting jobs, meeting people, etc...but only a few minutes into my job or new person I'd met it all came crashing down around me, cause I couldn't do all the 'gray area' stuff, the majority of everything.


I am not really sure what ABA is, and I dont think I had anything like that for treatment. But what you said is so true, all the help I have ever got was to act normal, never why to do the stuff or understanding givin so I could understand it more, more like "just do this and dont ask any questions" like training a dog, 'sit, stand, roll over'. So I am left with knowing so many things to do and things not to do in social situations, but not much understanding WHY for a lot of those. One of my first jobs, I worked at for awhile, I had a boss who had a autistic daughter, and I think she used these methods on me. She taught me so much about how to act while at work, all these unwriten rules people go by, but then we got a new boss and I got fired soon after, lol.

[peglem]

I think perhaps, too, that ABA tends to work better for kids who developed normally through infancy and then regressed into autism because they already developed those early neural connections. But, for my child, those connections are just not there (yet). Socially/emotionally she is responding like an infant to frustration and hardship and the connection for mommy to make it okay, while not completely absent, is considerably impaired.

[Aspigander]

Keep in mind I was presumed NT, so of course I was expected to act "normal", but yes, I did get a lot of act normal without understanding why (as Roadracer was talking about).

Somehow this reminds me of a boat story from last summer. Actually, it was the reason for one of my very first threads here. Mili really helped me understand the situation. Does anyone remember? This guy who is docked next to our boat has trouble docking his boat. My dad and I are in a group of people, my dad sees this guy is headed in, and makes a comment to get all women and children off the dock. Well I followed my dad as he went to help the guy dock (i.e. grab his boat and help guide it into the slip so it didn't hit stuff). Once in the slip, the guy thanked my dad, acknowledging that he has trouble docking. I open my big mouth and say (trying to be humorous, like my dad was): "Yeah, my dad announced your impending arrival by ordering all women and children off the dock." My dad was very unamused, and I kept trying to ask why. I just wasn't getting why he was unhappy with my repeating the joke that was originally his. I was so confused. He said it was insulting, but I just couldn't figure out why and kept trying to ask what was insulting about it. His response? "Think about it." I thought and thought and thought and thought and couldn't figure it out.

Mili actually helped me understand a bit better. Does anybody remember me posting about that?

In my experience, just being told to act normal but not why, and not understanding why, only leads to confusion and frustration.

[Jamies Mommy]

I think perhaps, too, that ABA tends to work better for kids who developed normally through infancy and then regressed into autism because they already developed those early neural connections. But, for my child, those connections are just not there (yet). Socially/emotionally she is responding like an infant to frustration and hardship and the connection for mommy to make it okay, while not completely absent, is considerably impaired.

I actually think just the opposite, the kids I 've met who regressed and became autistic are the ones who flunked ABA but the ones who were that way from the beginning and started on ABA at an early age ( like 15 months) are doing well. I was thinking because the brain was still develop-ing and those things were able to reroute and find a different pathway.

[Nikabee]

You've all just nailed the problems I've been having with ABA. I can teach my son by rote what to do in a certain situation, but if he doesn't understand why then he can't generalize that information and apply it to other, similar circumstances. So, instead of teaching one rule that could apply in several situations, I have to teach 15 very similar rules to cover all contingencies. I just can't seem to keep up! Life evolves, but ABA rules can't. And I totally agree with the "dog training" analogy... in fact, that was how it was described to me in the beginning and made me feel like his chances of living a full, happy life would be slim to none.

I'm just now starting to discover other ways to help him, thanks to everyone on this, and other, forums. I think now, I'm feeling some hope and that's really motivating. Thanks everyone! :)

[Isabelle]

"Over the years, we noticed that each time we visited, Noah had a new scar, a black eye or a chipped tooth. In clinical parlance, these were Noah's "unobserved, self-inflicted injuries" — or USIs. One day, Noah had a dozen thick, black stitches on his forehead. As Noah's medications increased, so too did the number of USIs he suffered. Noah was already on Trileptal, Zyprexa and oral and injected Ativan. The collective side effects of these three drugs filled three pages of his IPP. I've looked and never been able to find a study of how they interact in "normal" individuals or the autistic. Because Noah had reached the maximum legal dosage for each of these medications, the Fairview staff urged another new medication, the antidepressant Remeron. (It is important to note that Noah suffers from no other physical illness, ailment or handicap. His problems are entirely neurological.)"

[Isabelle]

"The program has made some real progress in weaning Noah from some of the medications he had been taking, cutting him down to two drugs from four. And the mysterious scars and bumps and bruises he was getting, what Fairview termed USIs, have largely ended. So far, Noah's assisted-living program represents a great improvement over Fairview, and my parents and I are thankful every day for this change in Noah's circumstances."

again another parent corroborate in detail what was done to my son.....
indeed, very heart breaking :(
as i said the use of neurotoxic "meds" on the non-verbal autistic should be banned....

[Kristen (ColeysMom)]

I actually think just the opposite, the kids I 've met who regressed and became autistic are the ones who flunked ABA but the ones who were that way from the beginning and started on ABA at an early age ( like 15 months) are doing well. I was thinking because the brain was still develop-ing and those things were able to reroute and find a different pathway.

I used to think that Coley regressed after some insults...whether to blame those insults, I could never quite do...maybe just speculate that it was possible...but without knowing for sure what actually caused his 'flare-up' of symptoms...in other words not knowing the cause of autism...I just couldn't say 'that's it'...or it's a coincidence or maybe a catalyst or something...

kinda doesn't matter now...Audrey has shown me that it was there all along, it just got more noticable when those 'neurological impairments' resulted in more obvious 'deficits'...

So, did Coley regress or was he born with perhaps a 'milder' case...dunno...

Either way, he FLUNKED ABA...in grand style. The good thing for us though...thank god for small miracles, even when you don't know that's what they are when they occur...is that his ABA therapist was very flexible in her approach. She knew these things were important to 'accomplish' but she also knew Coley wasn't about to do dog-tricks. So she morfed ABA with floor-time and for all intense purposes 'tricked' Coley into demonstating mastery in things so she could document it.

So not sure what that says, other than high functioning, low functioning...regressive, whatever...I think ABA flunkies span the population. ABA is not the be all end all...course I know that's not a revolutionary notion here...but it does beg the question: Where to go after ABA fails? It can't be to a place where you give up...but there aren't too many options are there?

Sad!