Need help.
Sep. 21st, 2005 02:59 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
conuly
One of my friends (who's neither confirmed nor denied that this is okay, so I'm saying this vaguely) needs a bit of help. She's looking into schooling/therapy options for her young son who is very likely (but not confirmed) autistic. Big issue right now is communication. She understands him to some extent, but he's not talking or signing or anything like that.
I'm hardly the expert on autistic education here, so if people who know more than I could just give a quick rundown of things she wants to look out for because they're Very Very Bad, and provide links on what they think is more useful, that'd be good.
Thanks. Most of my friends who know about this know more than I do, so I'm really counting on youse guys to help.
I'm hardly the expert on autistic education here, so if people who know more than I could just give a quick rundown of things she wants to look out for because they're Very Very Bad, and provide links on what they think is more useful, that'd be good.
Thanks. Most of my friends who know about this know more than I do, so I'm really counting on youse guys to help.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2005-09-21 07:38 pm (UTC)Avoid anyone gunning for treatments right now before they know what they're dealing with. Though I have nothing but good things to say about our experiences with speech therapy which went far beyond the physical issues of forming sounds.
She should also look into what level of coverage her insurance provider gives -- these kinds of therapies can be expensive if they're not covered by insurance. And expect to have long waits on getting approved for therapy by the doctors, therapists and providers.
Official diagnosis for autism took years. We got our first referral for further study and hearing test when youngest was two. Officially listed as autistic when she was six. Fortunately, she qualified for treatment during the interim.
no subject
Date: 2005-09-21 07:47 pm (UTC)However, since it can take a while to get the hearing test done, there's no harm in finding out options on autism, since it does look like a strong possibility for her kid.
no subject
Date: 2005-09-22 03:04 am (UTC)Or there could be something I simply don't know about? I don't know. Tomorrow is the first step in what I imagine will be a number of visits, an audiologist is probably next as is a visit with the developmental pediatrician I had recommended to me. But first, the pediatrician I have for all my kids and that I trust.
no subject
Date: 2005-09-22 04:31 am (UTC)My son was screened at 18 months then 2, again at 4, another time around 5.5 and last one was at 7 I think. He's not autistic though was screened for it and genetic disorders. He does mimic some of the traits of autism though. He was nonverbal til 2. I took 2 parent training courses(Hanen program) to teach him how to speak, along with using PECS and signs. He had OT and PT too. And he was being watched by a psychologist under a severely behaviourally disabled program. Since about 6 he's been quite mellow and is a good boy. Some typical challanging teen behaviour now though(he's 13). Early intervention can make a heck of a difference and that is labels aside. I have seen kids with many labels benifit from similar methods as far as speech, ot/pt, and working on behaviour type stuff. *shrug*
Local groups covered what insurance or government programs didn't. Alot of non profit groups may provide funds or other help.
Btw my son has articulation disorder, expressive/receptive language disorder, Auditory Processing disorder, and poor auditory memory. I have aphasia, dysnomia, and CAPD myself. So I've been through the oral motor exercises with my son. He's orally hypotonic(actually full body) and lacks some sensation in his mouth he also has thickening of his upper lip. He sounds some what like Elmer Fudd talking but he talks up a storm now(even if it's unclear)... I joke my mom is getting grandparents revenge. ;)
Best place for a kid to go for diagnostics that has "something but I don't know what" is to see a developmental pediatrician. They will do blood tests and other things. It's best if that pediatrician is on a screening team. My son had to wait awhile to get into Sunny Hills program but it was worth it. He'd seen 3 other pediatricans before that. One who just wanted to push pills and treat parents as clueless. Another who believed if there was any issue between parents you couldn't resolve issues with the child... also my son tore appart his office. And a rather nice one my other kid had had but who didn't believe in early intervention programs.(he never said why and he was like that with all patients)
no subject
Date: 2005-09-21 08:38 pm (UTC)Linking her over to AutAdvo would probably also be a good idea.
ABA any form = bad
DAN = bad
PECS (picture communication) can be taught without ABA, but very few 'experts' will realize that. That's probably the way to go...labeling everything in the house with both words and pictures, then gradually introducing the idea of the kid taking the card along with whatever he wants, leading up to the kid giving or pointing at the card, is what seems to usually work. (It's similar to Jypsy's approach with Alex.)
Floortime *can* be very good, but only if it's done in a non-invasive non-aggressive manner that lets the kid choose to be alone, too. (There are two modes of handling Floortime -- one never lets the kid be alone, has the adult constantly taking things away from them, and generally seems to be a case of "let's force interaction through driving the autisic nuts" which is bad... The respectful/good type is more a case of parallel play following what the kid chooses to do, talking quietly by commenting on things or naming them, offering things the kid might be interested in, and only lasts for short bursts of time each day so the child looks forward to it rather than hating it!)
The parent might read "Not Even Wrong" by Paul Collins, which wasn't great but did describe teaching PECS, and certainly should read the various books from the autistic point of view so they can get an idea of what the child is experiencing (thus what might be causing upset or interest).
no subject
Date: 2005-09-21 09:21 pm (UTC)What I told her about ABA is that some aspects of ABA are used with most children, and aren't in and of themselves bad - but that the attitudes generally associated with ABA are harmful, in a very real sense. That's what she's being directed towards, and I don't know enough about the specifics to say "see, this, this here? BAD! But this is okay, because *everybody* uses this to learn, just about. But this? BAD!"
no subject
Date: 2005-09-21 09:29 pm (UTC)no subject
Date: 2005-09-22 05:05 am (UTC)Or the person who tried telling me that nobody gets bullied because they're autistic.
...that one made my head hurt a little because of how stupid it is.
no subject
Date: 2005-09-22 03:08 am (UTC)It didn't seem bad, didn't seem outrageous, seemed to make sense...a more basic and broken down way that many people learn? I am, of course, willing to listen. My goal is the same as for all my kids -- happiness/contentment, and independence, at the very least.
And what is floortime, exactly? What I read is about what I do now, commenting and naming things, I ask him to name things if he wants, and if he gets squirmy I let him go (or not even that point, he shuts his eyes when he has had enough of something).
no subject
Date: 2005-09-22 04:47 am (UTC)The lovaas ABA on the other hand I take a dim view of. One of my friends who has since passed away at a young age from a bad heart had post traumatic stress disorder from having ABA performed on him in the mid 80's. He described to me in great detail the after effects of that therapy. Another person that if you check around some groups or irc channels you may hear of is Dianne. Her son was recieving lovaas aba and they were starting to get concerns. Well they didn't take action soon enough as the therapist when restraining her son killed him. A friend who used the same therapist planted a camera and caught the "therapy" and fired the guy. Both women filed a lawsuit against the man who was a licensed and supposedly recommended ABA therapist. I'm not saying all lovaas therapists are absolute monsters but some by my own encounters with people that had first hand experience(either as an autistic or a parent who had something horribly go wrong) makes me look at it with extream caution. Lovaas method has been fought for here in BC where I live. It isn't funded but they can't deny the children having it. The government doesn't like the methodolgy so they don't want to fund it. They do fund some of the variants put out by Laurel Group and Gateway Services. They also provide private one on one therapy and psychologist time.
I suggest you pick up a book on early autism treatment. You will see years ago too that lovaas was involved in shock treatment which included cattle prods and electified floors. I had a talk with my mom about things done in those days as I was dx in the 70's. She was horrified when I mentioned a supposedly less bad varient is still around by that man. My 79 yr old mother actually said "they didn't know as much back in those days but these days they know alot more. They don't seem to think people are human if they are treating them like that." Yes for some kids treats to respond might work. But for a child that doesn't know why they will mimic for a treat and eventually drop it. They will develop other things in reaction to adversives. I know because they did forced eye contact on me and forced socialization. I ended up sucking my thumb until I was 17, and doing self injurous behaviour when nobody was looking.
There are alot of ways out there to deal with things. Best is to go with your gutt instincts. But realize even if we don't look like we are paying attention sometimes we are, we sometims hear and grasp more than people give us credit for. Also people shouldn't always fight our stuff and pronounce them evil. Somethings you can use positively. You have to look from another angle. Need for sameness potty trained my son and got him to finally eat more than mac and cheese with tons of ketchup. Often I think kids need an multi angle approach. When your little your dealing with alot of things sensory wise, language wise, etc and your coping skills aren't the greatest because you lack life experience to understand somethings or to know what to do about them.
I'm not sure on the floortime but I think it's pinning. I was taught to do sitting time outs with my son when he got violent and agressive. I'd sit with him in my lap so he couldn't attack me and had him in a quiet place saying soothing things. Usually this happened if he was trying to socialize before he was 5. Often though when he was out of control I'd put him in his room quietly(not much on walls to overwhelm him). As he threw stuff I'd take it out. Can't throw it if you don't have it and if you miss it you learn to not throw it. He'd eventually calm down and fall asleep.
Btw I used no specific method with my son. And while my parents were passed suggestions by the various professionals that saw me they didn't follow one either. They actually stood up and said no they wouldn't institutionalize me and I was going to be in the public school system. I went in with no aides, my parents had no special programs or funding. We survived.
no subject
Date: 2005-09-22 05:05 am (UTC)no subject
Date: 2005-09-22 03:09 am (UTC)no subject
Date: 2005-09-22 03:02 am (UTC)no subject
Date: 2005-09-22 02:03 pm (UTC)Looking back, some of the things that I wish I'd known were danger signs were echolalia, digestive problems (Colin seemed to always have diarrhea or constipation, sometimes both at once), and an absolute determination to wear the same thing every day. As a means of coping with that, I'd take him shopping, see which shirt he hugged, and try and buy two or three or four of them. I also had a pediatric neurologist tell me, unofficially, that most of the autistic children he'd seen were at least in the 90% growth percentile without being overweight: they weren't obese, they were simply big children and usually beautiful.
I've read that I'm very lucky that he didn't object to being touched, and that I could leave tags in his clothes. And that his preferred diet was more than six things.
I don't know what ABA or DAN are.
How old is the boy in question? My son, when he was three, was extremely echolalic and refused (was unable to? I honestly don't know) to make eye contact or respond to anyone who wasn't me or his stepfather. He was, however, very gifted with legos and would sometimes "make dinner" to let me know he was hungry and what he wanted to eat. He would also quote movie lines to let me know various needs. How does she communicate with her son?
no subject
Date: 2005-09-21 07:38 pm (UTC)Avoid anyone gunning for treatments right now before they know what they're dealing with. Though I have nothing but good things to say about our experiences with speech therapy which went far beyond the physical issues of forming sounds.
She should also look into what level of coverage her insurance provider gives -- these kinds of therapies can be expensive if they're not covered by insurance. And expect to have long waits on getting approved for therapy by the doctors, therapists and providers.
Official diagnosis for autism took years. We got our first referral for further study and hearing test when youngest was two. Officially listed as autistic when she was six. Fortunately, she qualified for treatment during the interim.
no subject
Date: 2005-09-21 07:47 pm (UTC)However, since it can take a while to get the hearing test done, there's no harm in finding out options on autism, since it does look like a strong possibility for her kid.
no subject
Date: 2005-09-22 03:04 am (UTC)Or there could be something I simply don't know about? I don't know. Tomorrow is the first step in what I imagine will be a number of visits, an audiologist is probably next as is a visit with the developmental pediatrician I had recommended to me. But first, the pediatrician I have for all my kids and that I trust.
no subject
Date: 2005-09-22 04:31 am (UTC)My son was screened at 18 months then 2, again at 4, another time around 5.5 and last one was at 7 I think. He's not autistic though was screened for it and genetic disorders. He does mimic some of the traits of autism though. He was nonverbal til 2. I took 2 parent training courses(Hanen program) to teach him how to speak, along with using PECS and signs. He had OT and PT too. And he was being watched by a psychologist under a severely behaviourally disabled program. Since about 6 he's been quite mellow and is a good boy. Some typical challanging teen behaviour now though(he's 13). Early intervention can make a heck of a difference and that is labels aside. I have seen kids with many labels benifit from similar methods as far as speech, ot/pt, and working on behaviour type stuff. *shrug*
Local groups covered what insurance or government programs didn't. Alot of non profit groups may provide funds or other help.
Btw my son has articulation disorder, expressive/receptive language disorder, Auditory Processing disorder, and poor auditory memory. I have aphasia, dysnomia, and CAPD myself. So I've been through the oral motor exercises with my son. He's orally hypotonic(actually full body) and lacks some sensation in his mouth he also has thickening of his upper lip. He sounds some what like Elmer Fudd talking but he talks up a storm now(even if it's unclear)... I joke my mom is getting grandparents revenge. ;)
Best place for a kid to go for diagnostics that has "something but I don't know what" is to see a developmental pediatrician. They will do blood tests and other things. It's best if that pediatrician is on a screening team. My son had to wait awhile to get into Sunny Hills program but it was worth it. He'd seen 3 other pediatricans before that. One who just wanted to push pills and treat parents as clueless. Another who believed if there was any issue between parents you couldn't resolve issues with the child... also my son tore appart his office. And a rather nice one my other kid had had but who didn't believe in early intervention programs.(he never said why and he was like that with all patients)
no subject
Date: 2005-09-21 08:38 pm (UTC)Linking her over to AutAdvo would probably also be a good idea.
ABA any form = bad
DAN = bad
PECS (picture communication) can be taught without ABA, but very few 'experts' will realize that. That's probably the way to go...labeling everything in the house with both words and pictures, then gradually introducing the idea of the kid taking the card along with whatever he wants, leading up to the kid giving or pointing at the card, is what seems to usually work. (It's similar to Jypsy's approach with Alex.)
Floortime *can* be very good, but only if it's done in a non-invasive non-aggressive manner that lets the kid choose to be alone, too. (There are two modes of handling Floortime -- one never lets the kid be alone, has the adult constantly taking things away from them, and generally seems to be a case of "let's force interaction through driving the autisic nuts" which is bad... The respectful/good type is more a case of parallel play following what the kid chooses to do, talking quietly by commenting on things or naming them, offering things the kid might be interested in, and only lasts for short bursts of time each day so the child looks forward to it rather than hating it!)
The parent might read "Not Even Wrong" by Paul Collins, which wasn't great but did describe teaching PECS, and certainly should read the various books from the autistic point of view so they can get an idea of what the child is experiencing (thus what might be causing upset or interest).
no subject
Date: 2005-09-21 09:21 pm (UTC)What I told her about ABA is that some aspects of ABA are used with most children, and aren't in and of themselves bad - but that the attitudes generally associated with ABA are harmful, in a very real sense. That's what she's being directed towards, and I don't know enough about the specifics to say "see, this, this here? BAD! But this is okay, because *everybody* uses this to learn, just about. But this? BAD!"
no subject
Date: 2005-09-21 09:29 pm (UTC)no subject
Date: 2005-09-22 05:05 am (UTC)Or the person who tried telling me that nobody gets bullied because they're autistic.
...that one made my head hurt a little because of how stupid it is.
no subject
Date: 2005-09-22 03:08 am (UTC)It didn't seem bad, didn't seem outrageous, seemed to make sense...a more basic and broken down way that many people learn? I am, of course, willing to listen. My goal is the same as for all my kids -- happiness/contentment, and independence, at the very least.
And what is floortime, exactly? What I read is about what I do now, commenting and naming things, I ask him to name things if he wants, and if he gets squirmy I let him go (or not even that point, he shuts his eyes when he has had enough of something).
no subject
Date: 2005-09-22 04:47 am (UTC)The lovaas ABA on the other hand I take a dim view of. One of my friends who has since passed away at a young age from a bad heart had post traumatic stress disorder from having ABA performed on him in the mid 80's. He described to me in great detail the after effects of that therapy. Another person that if you check around some groups or irc channels you may hear of is Dianne. Her son was recieving lovaas aba and they were starting to get concerns. Well they didn't take action soon enough as the therapist when restraining her son killed him. A friend who used the same therapist planted a camera and caught the "therapy" and fired the guy. Both women filed a lawsuit against the man who was a licensed and supposedly recommended ABA therapist. I'm not saying all lovaas therapists are absolute monsters but some by my own encounters with people that had first hand experience(either as an autistic or a parent who had something horribly go wrong) makes me look at it with extream caution. Lovaas method has been fought for here in BC where I live. It isn't funded but they can't deny the children having it. The government doesn't like the methodolgy so they don't want to fund it. They do fund some of the variants put out by Laurel Group and Gateway Services. They also provide private one on one therapy and psychologist time.
I suggest you pick up a book on early autism treatment. You will see years ago too that lovaas was involved in shock treatment which included cattle prods and electified floors. I had a talk with my mom about things done in those days as I was dx in the 70's. She was horrified when I mentioned a supposedly less bad varient is still around by that man. My 79 yr old mother actually said "they didn't know as much back in those days but these days they know alot more. They don't seem to think people are human if they are treating them like that." Yes for some kids treats to respond might work. But for a child that doesn't know why they will mimic for a treat and eventually drop it. They will develop other things in reaction to adversives. I know because they did forced eye contact on me and forced socialization. I ended up sucking my thumb until I was 17, and doing self injurous behaviour when nobody was looking.
There are alot of ways out there to deal with things. Best is to go with your gutt instincts. But realize even if we don't look like we are paying attention sometimes we are, we sometims hear and grasp more than people give us credit for. Also people shouldn't always fight our stuff and pronounce them evil. Somethings you can use positively. You have to look from another angle. Need for sameness potty trained my son and got him to finally eat more than mac and cheese with tons of ketchup. Often I think kids need an multi angle approach. When your little your dealing with alot of things sensory wise, language wise, etc and your coping skills aren't the greatest because you lack life experience to understand somethings or to know what to do about them.
I'm not sure on the floortime but I think it's pinning. I was taught to do sitting time outs with my son when he got violent and agressive. I'd sit with him in my lap so he couldn't attack me and had him in a quiet place saying soothing things. Usually this happened if he was trying to socialize before he was 5. Often though when he was out of control I'd put him in his room quietly(not much on walls to overwhelm him). As he threw stuff I'd take it out. Can't throw it if you don't have it and if you miss it you learn to not throw it. He'd eventually calm down and fall asleep.
Btw I used no specific method with my son. And while my parents were passed suggestions by the various professionals that saw me they didn't follow one either. They actually stood up and said no they wouldn't institutionalize me and I was going to be in the public school system. I went in with no aides, my parents had no special programs or funding. We survived.
no subject
Date: 2005-09-22 05:05 am (UTC)no subject
Date: 2005-09-22 03:09 am (UTC)no subject
Date: 2005-09-22 03:02 am (UTC)no subject
Date: 2005-09-22 02:03 pm (UTC)Looking back, some of the things that I wish I'd known were danger signs were echolalia, digestive problems (Colin seemed to always have diarrhea or constipation, sometimes both at once), and an absolute determination to wear the same thing every day. As a means of coping with that, I'd take him shopping, see which shirt he hugged, and try and buy two or three or four of them. I also had a pediatric neurologist tell me, unofficially, that most of the autistic children he'd seen were at least in the 90% growth percentile without being overweight: they weren't obese, they were simply big children and usually beautiful.
I've read that I'm very lucky that he didn't object to being touched, and that I could leave tags in his clothes. And that his preferred diet was more than six things.
I don't know what ABA or DAN are.
How old is the boy in question? My son, when he was three, was extremely echolalic and refused (was unable to? I honestly don't know) to make eye contact or respond to anyone who wasn't me or his stepfather. He was, however, very gifted with legos and would sometimes "make dinner" to let me know he was hungry and what he wanted to eat. He would also quote movie lines to let me know various needs. How does she communicate with her son?