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I hope this helps as many children out there as possible. But I'm actually more worried that this, left as it is, is just going to be used by mothers and fathe

by mpyne 12y ago

I hope this helps as many children out there as possible. But I'm actually more worried that this, left as it is, is just going to be used by mothers and fathers of children with autism, or the adults around them, as an indictment that they weren't "good enough parents". This was a common refrain leveled at mothers of children with mental illnesses not that long ago, and it would be unfortunate indeed if we let that type of accusation creep back into popular wisdom, to the extent that it's unfounded.

tokenadult 12y ago
Your concern is well founded, insofar as onlookers of other people's parenting are all too quick to blame parents for all bad characteristics of the children. But if further research shows parents whose infants are at risk for development of autistic signs how to nudge the children's development in the direction of more communication and ability to engage in self-care, I think most parents can be trusted to take research-based advice to help their children. AFTER EDIT: Here are some more links with news about the currently reported study. http://www.sacbee.com/2014/09/09/6690500/uc-davis-study-breaks-ground-on.html http://www.sacbee.com/2014/09/09/6690500/uc-davis-study-brea... http://time.com/3305027/autism-symptoms-disappeared-with-behavioral-therapy-in-babies/ http://time.com/3305027/autism-symptoms-disappeared-with-beh... The link below is a PubMed link to an earlier journal publication by the same research group. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023017/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023017/
- mpyne 12y ago
  I am 100% not trying to say we shouldn't pursue better remedies (or even cures). I am trying to say that we should be careful in how we phrase (and understand) these success stories. For instance there were 6 success out of a group of 7, which is wonderful news. But that still means there was 1 "failure"... were the parents to blame? Did they apply the "cure" wrong? Or was this an instance of a technique not having 100% applicability. This technique is far too late for my autistic child, but this is exactly the kind of question I would think a parent of autistic children would have, not to mention their friends and relatives who usually have even less insight into the state of autism research but who do remember headlines involving "cures for autism".
jerf 12y ago
"But I'm actually more worried that this, left as it is, is just going to be used by mothers and fathers of children with autism, or the adults around them, as an indictment that they weren't "good enough parents"." That's already something parents with autistic kids get to live with. You may get to choose your friends, but you don't choose your relatives, and some relatives have a hard time dealing with autistic grandkids/nephews/nieces/etc. Denial is a popular option. It would be stupid to even think about holding back a treatment because of this concern. I'm also frankly astonished that we have to preface stories about autism treatments with how wonderful autistic people are and how we're not trying to "eliminate their uniqueness". My autistic son is only lightly autistic, but believe me, this is a disability. It's great, it's truly great that many people manage to live with it and their lives aren't entirely ruined, but believe me, it's still a disability. If you can mitigate it, do so.
- jimmaswell 12y ago
  It's not always really a disability. Some have it light enough that it's not really a hinderence moreso than a difference. I had a minor diagnosis of it and so have others I know, and I don't feel like it negatively impacts my quality of life. I'm not alone in this and your one data point doen't disprove this. This doesn't mean it shouldn't me midigated but you shouldn't make such sweeping claims about it.
  - jerf 12y ago
    I am well aware of that. My point is, in some sense, the exact opposite... the fact that some people like you have it to a very minor degree shouldn't result in researchers having to half-apologize for trying to find treatments for it. Autism runs from barely-present all the way to total incapacitation and institutionalization... the idea that researchers have to defend themselves from people for trying to help cure it is crazy. The fact that they may or may not cure it someday, or mitigate it, or change it, none of that affects the humanity of the individuals, or who they are, or is a denial of anything about them, or anything like that, and I sincerely hope nobody ever so much as stalls a research application as a result of logic like this.
- 12y ago
makomk 12y ago
Yeah, I think we've even been here before with autism specifically: http://en.wikipedia.org/wiki/Refrigerator_mother_theory http://en.wikipedia.org/wiki/Refrigerator_mother_theory
deleted 12y ago
[deleted]

by mpyne 12y ago

tokenadult 12y ago

Your concern is well founded, insofar as onlookers of other people's parenting are all too quick to blame parents for all bad characteristics of the children. But if further research shows parents whose infants are at risk for development of autistic signs how to nudge the children's development in the direction of more communication and ability to engage in self-care, I think most parents can be trusted to take research-based advice to help their children. AFTER EDIT: Here are some more links with news about the currently reported study. http://www.sacbee.com/2014/09/09/6690500/uc-davis-study-breaks-ground-on.html http://www.sacbee.com/2014/09/09/6690500/uc-davis-study-brea... http://time.com/3305027/autism-symptoms-disappeared-with-behavioral-therapy-in-babies/ http://time.com/3305027/autism-symptoms-disappeared-with-beh... The link below is a PubMed link to an earlier journal publication by the same research group. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023017/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023017/

mpyne 12y ago
I am 100% not trying to say we shouldn't pursue better remedies (or even cures). I am trying to say that we should be careful in how we phrase (and understand) these success stories. For instance there were 6 success out of a group of 7, which is wonderful news. But that still means there was 1 "failure"... were the parents to blame? Did they apply the "cure" wrong? Or was this an instance of a technique not having 100% applicability. This technique is far too late for my autistic child, but this is exactly the kind of question I would think a parent of autistic children would have, not to mention their friends and relatives who usually have even less insight into the state of autism research but who do remember headlines involving "cures for autism".

jerf 12y ago

"But I'm actually more worried that this, left as it is, is just going to be used by mothers and fathers of children with autism, or the adults around them, as an indictment that they weren't "good enough parents"." That's already something parents with autistic kids get to live with. You may get to choose your friends, but you don't choose your relatives, and some relatives have a hard time dealing with autistic grandkids/nephews/nieces/etc. Denial is a popular option. It would be stupid to even think about holding back a treatment because of this concern. I'm also frankly astonished that we have to preface stories about autism treatments with how wonderful autistic people are and how we're not trying to "eliminate their uniqueness". My autistic son is only lightly autistic, but believe me, this is a disability. It's great, it's truly great that many people manage to live with it and their lives aren't entirely ruined, but believe me, it's still a disability. If you can mitigate it, do so.

jimmaswell 12y ago
It's not always really a disability. Some have it light enough that it's not really a hinderence moreso than a difference. I had a minor diagnosis of it and so have others I know, and I don't feel like it negatively impacts my quality of life. I'm not alone in this and your one data point doen't disprove this. This doesn't mean it shouldn't me midigated but you shouldn't make such sweeping claims about it.
- jerf 12y ago
  I am well aware of that. My point is, in some sense, the exact opposite... the fact that some people like you have it to a very minor degree shouldn't result in researchers having to half-apologize for trying to find treatments for it. Autism runs from barely-present all the way to total incapacitation and institutionalization... the idea that researchers have to defend themselves from people for trying to help cure it is crazy. The fact that they may or may not cure it someday, or mitigate it, or change it, none of that affects the humanity of the individuals, or who they are, or is a denial of anything about them, or anything like that, and I sincerely hope nobody ever so much as stalls a research application as a result of logic like this.
12y ago

makomk 12y ago

Yeah, I think we've even been here before with autism specifically: http://en.wikipedia.org/wiki/Refrigerator_mother_theory http://en.wikipedia.org/wiki/Refrigerator_mother_theory

deleted 12y ago

[deleted]