"probably never really had autism in the first place"

[Anonymous]

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.

[Anonymous]

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.

I'm going to repost this on every SN thread where I get bashed for pointing out that in the super-close call cases with 'ASD' like behaviors, kids can and do wind up in the same place without $600,000 worth of 'intervention' from ages 22 mos. to 8 years. Nobody believes me, or wants to believe me I think, because skipping the 4x a week therapies is understandably viewed by loving, concerned parents as "not doing everything we can when early intervention Has Been Proven To Help."

and to repeat, I just said super. close. call. cases where the diagnostician has equivocal language in his (they're all 'he's') report.

[Anonymous]

Some of us don't want to risk it.

I have nephews whose parents refused to deal with issues such as:

- obsessions with objects
- not playing with other children
- inability to have a conversation, lacking give and take
- not engaged in class, etc.

They dealt with it by redshirting. No other interventions. They are both extremely bright but have relatively poor social skills and are doing ok: The 7 yr old is in kindergarten and the 5 yr old is in prek.

Some parents don't want the label even if it can make their child's life easier.

[Anonymous]

Anonymous wrote:Some of us don't want to risk it.

I have nephews whose parents refused to deal with issues such as:

- obsessions with objects
- not playing with other children
- inability to have a conversation, lacking give and take
- not engaged in class, etc.

They dealt with it by redshirting. No other interventions. They are both extremely bright but have relatively poor social skills and are doing ok: The 7 yr old is in kindergarten and the 5 yr old is in prek.

Some parents don't want the label even if it can make their child's life easier.

Some of us want the RIGHT label, but people are too busy cramming all kids under the autism label no matter what the true nature of their disability. This doesn't help anybody get the right help.

I know many parents who have gotten help for their children by using a more general developmental delay label that fades out at 7 or 8. Then they were caught up, and weren't caught under the weight of the autism label.

[Anonymous]

Please, please stop banging this kids with ASDs are misdiagnosed drum. There are far more children harmed by missing out on early diagnoses and early intervention than the other way around. All this post says is that there are cases where it just isn't clear if the children really did have an ASD and the interventions pushed them outside of the diagnostic criteria or whether they were misdiagnosed. There is no way to know unless you withhold interventions from a control group and that won't happen. Better to have the interventions and the early diagnosis.

I think you do some harm by harping on this idea that that kids with ASDs are misdiagnosed. First, you just reenforce parents' denial. Second, your reenforce this idea out there that many of who so have kids on the spectrum have to deal with, that we are somehow overreacting. It just doesn't help. No one wants to see children misdiagnosed but I am much more concerned about the kids who aren't getting diagnosed at all.

Your obsession with this issue just makes me think you are insecure about your own DC's issues. Why are you on the SN board if your child doesn't have SN? How is this supportive for those of us who do?

[Anonymous]

Anonymous wrote:

Anonymous wrote:Some of us don't want to risk it.

I have nephews whose parents refused to deal with issues such as:

- obsessions with objects
- not playing with other children
- inability to have a conversation, lacking give and take
- not engaged in class, etc.

They dealt with it by redshirting. No other interventions. They are both extremely bright but have relatively poor social skills and are doing ok: The 7 yr old is in kindergarten and the 5 yr old is in prek.

Some parents don't want the label even if it can make their child's life easier.

Some of us want the RIGHT label, but people are too busy cramming all kids under the autism label no matter what the true nature of their disability. This doesn't help anybody get the right help.

I know many parents who have gotten help for their children by using a more general developmental delay label that fades out at 7 or 8. Then they were caught up, and weren't caught under the weight of the autism label.

I understand. Of course everyone wants a correct diagnosis. However, they have no label and no help at all b/c the parents refuse to get them evaluated.

[Anonymous]

Please, please stop banging this kids with ASDs are misdiagnosed drum. There are far more children harmed by missing out on early diagnoses and early intervention than the other way around. All this post says is that there are cases where it just isn't clear if the children really did have an ASD and the interventions pushed them outside of the diagnostic criteria or whether they were misdiagnosed. There is no way to know unless you withhold interventions from a control group and that won't happen. Better to have the interventions and the early diagnosis.

I'm not sure if you're quoting me? (I'm 10:42). I want to make clear that I'm not making any assertions about correct diagnosis or misdiagnosis. Let's just agree that 100% of kids are correctly diagnosed.

What I am asserting -- and what's in the block quote below -- is that researchers with far more expertise than you or I know that some kids on the margins WILL wind up in the exact same place whether they have 7 years of "early intervention" or not. There is a "way to know," contrary to what you post above, because researchers look retroactively at sizeable groups of kids who had no treatment whatsoever and compare them to kids who did.

I also feel I should say the obvious, which is that I'm not urging anyone away from therapy, although I realize it sounds that way. What I AM saying is that, as a parent, if you decide for example that you don't have tens of thousands, even a hundred thousand, to spend on therapy for years on end .... that's OK for a lot of kids. They won't be worse for the wear, as shown by empirical evidence of large samples of subjects.

Few moms who are down in the weeds and who are choosing otherwise can admit this.

"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."

[Anonymous]

Who in their right mind would refuse to get their child needed help over fear of a "label". I know that therapy has helped my son tremendously. He still has challenges, but is so much better now than he was a few years ago. I don't think it's just from "maturing".

[Anonymous]

This entire thread just cracks me up. OP....when people notice that their child is not developing correctly, they go for help. who cares how they get it!!!!! Some use biomed, some use therapy. Some recover and others remain stimming in a corner for the rest of their lives. Either way, our kids are not your fucking science experiment.

[Anonymous]

Its not "OK for a lot of kids." It may be OK for a small number of kids. Until we know who those small number of kids are, this whole discussion is pointless.

[Anonymous]

My kid is "high functioning" whatever the H%$$ that means. He has Asperger's. It has crippled his life several times over the years. Yet you could meet him and not know that anything was "wrong." Or you could meet him and wonder what kind of horrible parents are raising him. Or you could meet him and think he was brilliant. Or you could meet him and feel sorry for him that he has to live with his demons. I admit that sometimes I have done therapies bc I was "supposed" to. Some of those (social skills) have been a monumental waste of time. Others have not. I have not spent nearly as much actual $ on therapy as I have on parenting him in a different way than most other kids are parented. I work part-time so I can pick him up at school every day and be on hand for every last meeting and issue. That costs money. He can't have normal babysitters or just be dropped at a friend's for a playdate so we can get out. That costs money (every once in a while we actually do have to get out of the house without him). We buy food he used to eat that will go untouched on his plate bc somehow it now offends his olfactory senses. That costs money (and yes, he would rather go to bed hungry than eat it). We have meds that I suppose he might be able to live without, but at what cost to his life, our lives, his sibling's life, his self-esteem and ability to attend school? With those meds go check-ups with the psychiatrist, of course only partially covered by insurance. Might he be alive and largely functional without any intervention? Possibly. Might he be ok if he had a mother who just went to work and left him in aftercare and didn't work as hard on him? Possibly. Would he grow up to be a functional member of society and have a job and a family? Possibly. I want what every other parent wants for her child. I want him to be happy NOW and happy as an adult. I want him to live to adulthood and not commit suicide bc he's so miserable at being different. I want not to be THAT parent at the classroom activities. I want him to have friends and the tools to deal with those friendships and future relationships (without them, a marriage will never work for him). I want him to have the job that he can achieve (scientist, teacher, mathematician, doctor) rather than something that pays the bills and puts up with him. I would like him to end up being someone who people think, "well, gee, I would never know he had autism." But believe me, he has it, we live it, and it's f&*#ing hard every single day. Not every hour, sometimes, but every day. I'm glad that we can make the necessary sacrifices to help him on his path.

[Anonymous]

What about those families with imperceptibly autistic boys who flat out cannot afford the $200 - $300 a week out of pocket for speech, OT, social skills and a nutritionist and supplements? 52 weeks a year, year after year?

They can't afford, no matter what, it because Dad's low-level IT job and mom's admin. job won't cover that.

Do they love their boys a little less, do you think?

[Anonymous]

Anonymous wrote:What about those families with imperceptibly autistic boys who flat out cannot afford the $200 - $300 a week out of pocket for speech, OT, social skills and a nutritionist and supplements? 52 weeks a year, year after year?

They can't afford, no matter what, it because Dad's low-level IT job and mom's admin. job won't cover that.

Do they love their boys a little less, do you think?

If you're speaking to me, PP with Aspie, no of course not. We can't afford it either. We have no therapy at all right now bc we can't afford it. Dad makes a very small amount of $ compared to people in this area and works 80 hours/week to make that happen. If we are lucky we will be able to "retire" (from working as we will never be able to retire from parenting our son) before we are too old to get to work anymore and won't live to 100 with some debilitating disease that we can't afford. We all do the best we can for our kids. Just wanted to point out how much work a more mildly autistic kid is, how much it takes for the family, and try to indicate, in my own way, that just bc a kid might grow up to be somewhat "normal" it may well not be the normal that you would want for your child without some help.

[Anonymous]

Anonymous wrote:What about those families with imperceptibly autistic boys who flat out cannot afford the $200 - $300 a week out of pocket for speech, OT, social skills and a nutritionist and supplements? 52 weeks a year, year after year?

They can't afford, no matter what, it because Dad's low-level IT job and mom's admin. job won't cover that.

Do they love their boys a little less, do you think?

My DS is more than mildly affected and although i DO have the means for this, I wont pay for out-of-pocket, private therapy. DS gets services at school with his IEP. After that, he gets to be a kid at home with his siblings. PLUS, if you really want your DS to have this kind of therapy but can't afford it, read a book or two and start doing things with your child on your own. You don't have to be a rocket scientist to do therapy with your kid. It's just interaction...with play, with words, with direction.

[Anonymous]

Anonymous wrote:

Anonymous wrote:What about those families with imperceptibly autistic boys who flat out cannot afford the $200 - $300 a week out of pocket for speech, OT, social skills and a nutritionist and supplements? 52 weeks a year, year after year?

They can't afford, no matter what, it because Dad's low-level IT job and mom's admin. job won't cover that.

Do they love their boys a little less, do you think?

My DS is more than mildly affected and although i DO have the means for this, I wont pay for out-of-pocket, private therapy. DS gets services at school with his IEP. After that, he gets to be a kid at home with his siblings. PLUS, if you really want your DS to have this kind of therapy but can't afford it, read a book or two and start doing things with your child on your own. You don't have to be a rocket scientist to do therapy with your kid. It's just interaction...with play, with words, with direction.

I don't think you should have to mortgage your life away and spend every last penny on therapy but it's a lot more than 'just interaction...with play, withwords, with directions', then it's no wonder you're not willing to go out of network. The services my kid receives at school are only to make him successful in an academic setting, they don't deal with much of his life outside that arena - such as developing enough strength and coordination to wipe his own butt, learning how to control and manage his emotional flooding. The 'in-network' therapists we've seen have, by and large, not been nearly as good as the out of network therapists. One may not be able to afford long term therapy but it's worth seeking out the best for a short while just to understand what you can't learn from the books.