Anonymous
12/16/2011 07:33
Subject: Re: "probably never really had autism in the first place"
I agree with 21:02 and 21:08. We chose to pursue therapy because even though DS might have caught up on his own, his challenges were causing problems in the present, we didn't want him compensating in inappropriate ways and it was far more likely he would not be as successful without intervention. We weren't willing to risk suffering the consequences and missed windows of oppportunity by delaying therapy. He's also one of those kids for whom it wasn't clear if he had ASD but we educated ourselves, sought out excellent medical providers and made the best decisions we could with the information we had. That's what any parent should do.
Anonymous
12/15/2011 22:28
Subject: "probably never really had autism in the first place"
Anonymous wrote:Anonymous wrote:Anonymous wrote:I don't anyone can make the credible argument that doing nothing is the right approach when the majority of children will benefit. It would be one thing if we could determine which will not, but we can't. We give chemo to cancer patients who would be fine without it because we don't know which have micrometastasis and which don't. the downsides of not treating are far greater than the downsides of possibly overtreating.
Why would anyone put a child with an expressive language delay through ABA? That doesn't make sense unless the child has an ASD.
Because they've been told their child has autism and they are desperate for a cure. Or they don't understand their child just has an expressive delay, and they think ABA will be a cure.
I'm really curious why you are so obsessed with this idea that there are legions of children out there with expressive language delays being diagnosed with autism. I just don't se it. ASDs involve far more than language delays and I've never seen a child diagnosed when that was the sole issue. I have never, ever heard of a child who was misdiagnosed with an ASD and did ABA by mistake. ABA is not an easy thing to access or implement and generally the kids who are more severely affected are the ones who get it. Has there ever been a child who only had a speech delay but received ABA? Maybe, who knows? but if so it is a real rarity. Why are you so obsessed with this? What exactly is going on with your child that you have to harp on the idea that others are being misdiagnosed?
I think that the PP you are referring to can't stand the fact that the numbers have gone up so high regarding autism diagnosis. If she can convince people that their kids don't have autism and enough people re-label their kids, the autism rate lowers and everyone will more likely believe her "autism isn't an epidemic, it's always been this way" theory. Either way, she can go suck it!!
Anonymous
12/15/2011 21:51
Subject: "probably never really had autism in the first place"
Anonymous wrote:Anonymous wrote:I don't anyone can make the credible argument that doing nothing is the right approach when the majority of children will benefit. It would be one thing if we could determine which will not, but we can't. We give chemo to cancer patients who would be fine without it because we don't know which have micrometastasis and which don't. the downsides of not treating are far greater than the downsides of possibly overtreating.
Why would anyone put a child with an expressive language delay through ABA? That doesn't make sense unless the child has an ASD.
Because they've been told their child has autism and they are desperate for a cure. Or they don't understand their child just has an expressive delay, and they think ABA will be a cure.
I'm really curious why you are so obsessed with this idea that there are legions of children out there with expressive language delays being diagnosed with autism. I just don't se it. ASDs involve far more than language delays and I've never seen a child diagnosed when that was the sole issue. I have never, ever heard of a child who was misdiagnosed with an ASD and did ABA by mistake. ABA is not an easy thing to access or implement and generally the kids who are more severely affected are the ones who get it. Has there ever been a child who only had a speech delay but received ABA? Maybe, who knows? but if so it is a real rarity. Why are you so obsessed with this? What exactly is going on with your child that you have to harp on the idea that others are being misdiagnosed?
Anonymous
12/15/2011 21:10
Subject: "probably never really had autism in the first place"
Anonymous wrote:I don't anyone can make the credible argument that doing nothing is the right approach when the majority of children will benefit. It would be one thing if we could determine which will not, but we can't. We give chemo to cancer patients who would be fine without it because we don't know which have micrometastasis and which don't. the downsides of not treating are far greater than the downsides of possibly overtreating.
Why would anyone put a child with an expressive language delay through ABA? That doesn't make sense unless the child has an ASD.
Because they've been told their child has autism and they are desperate for a cure. Or they don't understand their child just has an expressive delay, and they think ABA will be a cure.
Anonymous
12/15/2011 21:08
Subject: Re: "probably never really had autism in the first place"
Anonymous wrote:I say this as someone who had a kid with lots of red flags for autism around age 1.5-2 and now by 3 it's clear that ASD is not what DC is dealing with, according to two dev peds and our school system.
As a parent with a delayed child, you basically have two options:
1. Therapy. You assume your child will not catch up naturally and you pursue therapy to help your child's development as much as you can in the early formative years.
2. No Therapy. You assume your child will catch up naturally.
When you make this decision, there is no way to know whether your child will catch up or not. You have to guess. For me, that guess was to do therapy. I am comfortable with the idea that I will never truly know if it was necessary. But, at the end of the day, I would rather look back and this time and laugh at myself for being too neurotic than look back and regret that I didn't do enough during this time. So, therapy it is.
Then a second issue comes into play when choosing which therapies to do. ABA is said to be great for kids with ASD, but less progressive forms of ABA can be too restricting for kids with other delays. So, again, you have to guess. For me, I have chosen to do the therapies suggested to me by our dev ped (speech, OT, and developmental preschool). If my dev ped had said ABA, I would have done it.
There are no easy answers.
I agree. I don't know many parents who chose option 2. Most did some sorts of therapy. But the second issue is so huge. As a PP brought up, how MUCH do you do? Do you empty out your bank accounts, declare bankruptcy, lose your house in endless treatment after treatment or to sustain ABA therapy? Do you force the school systems to pay for ABA like the parents in the LA Times story did? Do you try the unproven, possibly dangerous treatments?
That's why a good diagnosis, to figure out EXACTLY what you are facing, is so crucial. And I'm surprised at the amount of posters who say, "Just call it autism, so we can start therapy -- ANY therapy!"
Anonymous
12/15/2011 21:02
Subject: Re: "probably never really had autism in the first place"
I say this as someone who had a kid with lots of red flags for autism around age 1.5-2 and now by 3 it's clear that ASD is not what DC is dealing with, according to two dev peds and our school system.
As a parent with a delayed child, you basically have two options:
1. Therapy. You assume your child will not catch up naturally and you pursue therapy to help your child's development as much as you can in the early formative years.
2. No Therapy. You assume your child will catch up naturally.
When you make this decision, there is no way to know whether your child will catch up or not. You have to guess. For me, that guess was to do therapy. I am comfortable with the idea that I will never truly know if it was necessary. But, at the end of the day, I would rather look back and this time and laugh at myself for being too neurotic than look back and regret that I didn't do enough during this time. So, therapy it is.
Then a second issue comes into play when choosing which therapies to do. ABA is said to be great for kids with ASD, but less progressive forms of ABA can be too restricting for kids with other delays. So, again, you have to guess. For me, I have chosen to do the therapies suggested to me by our dev ped (speech, OT, and developmental preschool). If my dev ped had said ABA, I would have done it.
There are no easy answers.
As a parent with a delayed child, you basically have two options:
1. Therapy. You assume your child will not catch up naturally and you pursue therapy to help your child's development as much as you can in the early formative years.
2. No Therapy. You assume your child will catch up naturally.
When you make this decision, there is no way to know whether your child will catch up or not. You have to guess. For me, that guess was to do therapy. I am comfortable with the idea that I will never truly know if it was necessary. But, at the end of the day, I would rather look back and this time and laugh at myself for being too neurotic than look back and regret that I didn't do enough during this time. So, therapy it is.
Then a second issue comes into play when choosing which therapies to do. ABA is said to be great for kids with ASD, but less progressive forms of ABA can be too restricting for kids with other delays. So, again, you have to guess. For me, I have chosen to do the therapies suggested to me by our dev ped (speech, OT, and developmental preschool). If my dev ped had said ABA, I would have done it.
There are no easy answers.
Anonymous
12/15/2011 21:00
Subject: Re: "probably never really had autism in the first place"
Anonymous wrote:But therapy can be a necessity whether a child is ASD or not. It's better than doing nothing as the OP suggests and let it work itself out.
You and many others keep saying this, and yet science has proved this wrong for a percentage of kids. (I'm neither OP nor the PP you're addressing). It's just as good to do nothing, sometimes, according to statistically significant reams of hard data compiled by scientists with many letters after their names.
I don't know why that point keeps getting buried. ? I mean, is it painful to admit this as a parent? Are the people in denial on DCUM actually therapists who are posting anonymously?
Why can't we, as SN parents, admit that sometimes years of therapy does indeed help a condition in the long run, and sometimes years of therapy makes no difference whatsoever?
Have a little compassion, dude. Having a kid with ASD or other SN is scary as hell. Parents have so little control. It's painful to see your kid suffering and not be able to help him.
Anonymous
12/15/2011 20:57
Subject: "probably never really had autism in the first place"
I don't anyone can make the credible argument that doing nothing is the right approach when the majority of children will benefit. It would be one thing if we could determine which will not, but we can't. We give chemo to cancer patients who would be fine without it because we don't know which have micrometastasis and which don't. the downsides of not treating are far greater than the downsides of possibly overtreating.
Why would anyone put a child with an expressive language delay through ABA? That doesn't make sense unless the child has an ASD.
Why would anyone put a child with an expressive language delay through ABA? That doesn't make sense unless the child has an ASD.
Anonymous
12/15/2011 20:05
Subject: Re: "probably never really had autism in the first place"
But therapy can be a necessity whether a child is ASD or not. It's better than doing nothing as the OP suggests and let it work itself out.
You and many others keep saying this, and yet science has proved this wrong for a percentage of kids. (I'm neither OP nor the PP you're addressing). It's just as good to do nothing, sometimes, according to statistically significant reams of hard data compiled by scientists with many letters after their names.
I don't know why that point keeps getting buried. ? I mean, is it painful to admit this as a parent? Are the people in denial on DCUM actually therapists who are posting anonymously?
Why can't we, as SN parents, admit that sometimes years of therapy does indeed help a condition in the long run, and sometimes years of therapy makes no difference whatsoever?
Anonymous
12/15/2011 19:59
Subject: "probably never really had autism in the first place"
Anonymous wrote:From Day 3 of the Los Angeles Times autism series:
http://www.latimes.com/news/local/autism/la-me-autism-day-three-html,0,3438178.htmlstory
Families cling to hope of autism 'recovery'
An autism treatment called applied behavior analysis, or ABA, has wide support and has grown into a profitable business. It has its limits, though, and there are gaps in the science.
....
Such stories seem straightforward: A child is diagnosed with autism, receives ABA and gets better. But for scientists, they are difficult to interpret.
Children receive intensive treatment when their brains are already undergoing rapid change, making it difficult to sort out its effects from the gains that come with natural development. Studies that track autistic children over time show that some experience significant improvements in IQ and an easing of symptoms without any systematic treatment.
Dr. Bennett Leventhal, an autism specialist at the Nathan Kline Institute for Psychiatric Research in Orangeburg, N.Y., said that in rare cases an autistic child receiving therapy can improve enough to pass for normal.
But others who are deemed recovered "probably never really had autism in the first place," he said.
I just got done speaking with a woman who was getting the autism speech from the school teacher. So she had a comprehensive eval by a developmental pediatrician, who said -- no way.
So now she's on a totally different path than she would be if she thought it was autism. And that's just dealing with conventional treatments! It will totally save her from being tempted by all the unproven shams, like DAN, chelation, supplements, etc. But if she'd just taken the teacher's word for it, her kid would be looking at a totally different childhood.
Anonymous
12/15/2011 19:54
Subject: Re: "probably never really had autism in the first place"
Anonymous wrote:Anonymous wrote:And do you really think it's a good idea to spend 200 grand on a child with an expressive language delay, putting them into ABA treatment?
Ha ha! You can spend that amount on a non-ASD for speech therapy! Long live speech therapy 7 years and counting...
wow! I just ran through our numbers for speech therapy, and for twice a week for 7 years it would be under 50 grand, nowhere near $200,000. Those are very expensive speech sessions.
We did about 5 years of private speech therapy, but then dropped it for activities, which got the social language going.
Anonymous
12/15/2011 19:27
Subject: Re: "probably never really had autism in the first place"
Anonymous wrote:And do you really think it's a good idea to spend 200 grand on a child with an expressive language delay, putting them into ABA treatment?
Ha ha! You can spend that amount on a non-ASD for speech therapy! Long live speech therapy 7 years and counting...
Anonymous
12/15/2011 19:08
Subject: Re: "probably never really had autism in the first place"
More than half of children with expressive delays will catch up without any treatment by the time they hit K.
This is wrong. Developmental delays are lifelong. Kids with speech delays are more at risk for low tone, dyslexia, dysgraphia, ADHD.
No one is suggesting a one-size fits all to therapy. But therapy can be a necessity whether a child is ASD or not. It's better than doing nothing as the OP suggests and let it work itself out.
Anonymous
12/15/2011 18:19
Subject: Re: "probably never really had autism in the first place"
Anonymous wrote:OP, in some ways a developmental delay is a developmental delay. At the end of the day, it doesn't matter is your kid is ASD or has a expressive speech delay--they both will need speech therapy. So it won't really matter if by age 7 the kid doesn't need therapy any longer.
You seem to think people drag their kids to therapy like it's a hideous Jon-Bennet Ramsey style beauty pageant and the parents are just looking for something to do with their spare time. What is really tragic is that we don't have universal health care so parents don't have to go broke or go without just trying to help their kid survive in life.
And of course the science isn't there yet. We don't have a cure for cancer and researchers have been working on that one a lot longer than the reasons and treatment of autism. It wasn't that long ago that most kids exhibiting autistic behaviors would have been dumped in institutions to sit in their own feces for the rest of their lives. So really what is your point?
Actually, it makes ALL the difference if your child has an ASD vs. an expressive language delay. Therapies designed for autism can be a terrible setback to a child with another type of language issue. All the underlying assumptions are wrong.
And do you really think it's a good idea to spend 200 grand on a child with an expressive language delay, putting them into ABA treatment? More than half of children with expressive delays will catch up without any treatment by the time they hit K.
Anonymous
12/15/2011 18:01
Subject: Re: "probably never really had autism in the first place"
OP, in some ways a developmental delay is a developmental delay. At the end of the day, it doesn't matter is your kid is ASD or has a expressive speech delay--they both will need speech therapy. So it won't really matter if by age 7 the kid doesn't need therapy any longer.
You seem to think people drag their kids to therapy like it's a hideous Jon-Bennet Ramsey style beauty pageant and the parents are just looking for something to do with their spare time. What is really tragic is that we don't have universal health care so parents don't have to go broke or go without just trying to help their kid survive in life.
And of course the science isn't there yet. We don't have a cure for cancer and researchers have been working on that one a lot longer than the reasons and treatment of autism. It wasn't that long ago that most kids exhibiting autistic behaviors would have been dumped in institutions to sit in their own feces for the rest of their lives. So really what is your point?
You seem to think people drag their kids to therapy like it's a hideous Jon-Bennet Ramsey style beauty pageant and the parents are just looking for something to do with their spare time. What is really tragic is that we don't have universal health care so parents don't have to go broke or go without just trying to help their kid survive in life.
And of course the science isn't there yet. We don't have a cure for cancer and researchers have been working on that one a lot longer than the reasons and treatment of autism. It wasn't that long ago that most kids exhibiting autistic behaviors would have been dumped in institutions to sit in their own feces for the rest of their lives. So really what is your point?