Post by itt2 on Nov 14, 2015 21:30:31 GMT
I am not starting this thread to argue about whether or not autistics can be "cured" or "recovered." My personal opinion is that right now we are lumping a whole bunch of underlying conditions with a variety of etiologies into the category of "autism" and I cannot say for certain whether or not any of them can be cured or recovered. I suspect most of them cannot be.
But that is not my purpose of this discussion.
When my daughter was first diagnosed, she fell in the moderate-severe range of classic autism. She was pre-verbal, had varying degrees of disconnection, was failing to develop socially, stimmed, engaged in repetitive behavior, had sensory issues, and had some headbanging.
8 years later, at first glance she looks like any other 10 year old. I think that if I was a parent who believed she could be recovered, I would call her recovered.
But I think this would be an enormous mistake.
It would be a mistake, because for however well-compensated she is most of the time, her wiring is still evident. For as "normal" as she looks initially, she still tends toward rigidity. She has difficulty dealing with novel situations. She shuts down when she is overwhelmed. She fails to read social cues effectively on a consistent basis. She still needs to be prepared and to have scripts. When she is not overloaded and when she is in a comfortable/familiar situation or environment, she does very well. Sometimes she does "well" for so long that I almost forget. Almost.
Then something happens and all of her compensatory mechanisms become too strained and they unravel. And she looks like a completely different kid. Like a kid who is rigid. Like a kid who is socially inept. Like a kid who has impaired communication.
The reason I think think the concept of "recovery" is dangerous, is because if I believed she was "cured" or "recovered," I would likely see these instances as evidence that she was misbehaving, or not trying hard enough. If I thought she was cured or recovered, I would hold expectations that are unrealistic, perhaps even damaging.
Instead, I think it is important for parents to remember that their kid is compensating well. They have learned how to function effectively. It is a wonderful thing, to be sure. But none of it is hardwired. None of it comes naturally. The autistic hardwiring is still the underlying neurology. That needs to be respected so that the effort that it takes to appear "normal" will always be appreciated. So that when their ability to compensate unravels, they will be treated with care, not criticism.
I believe all kids should be pushed and supported to their highest level of functioning. I am not talking about giving my daughter an "autism pass." I actually have high expectations, and she amazes me with her ability to meet and surpass them on a regular basis. But I will never forget or dismiss the extra effort it takes her.
What do others think? Again, I don't want to start a debate about cure/no cure, etc. I am more interested to hear the perspectives of others (either parents of kids who "pass" or adults who "pass").
ETA: or anyone else who has an opinion they would like to share.
But that is not my purpose of this discussion.
When my daughter was first diagnosed, she fell in the moderate-severe range of classic autism. She was pre-verbal, had varying degrees of disconnection, was failing to develop socially, stimmed, engaged in repetitive behavior, had sensory issues, and had some headbanging.
8 years later, at first glance she looks like any other 10 year old. I think that if I was a parent who believed she could be recovered, I would call her recovered.
But I think this would be an enormous mistake.
It would be a mistake, because for however well-compensated she is most of the time, her wiring is still evident. For as "normal" as she looks initially, she still tends toward rigidity. She has difficulty dealing with novel situations. She shuts down when she is overwhelmed. She fails to read social cues effectively on a consistent basis. She still needs to be prepared and to have scripts. When she is not overloaded and when she is in a comfortable/familiar situation or environment, she does very well. Sometimes she does "well" for so long that I almost forget. Almost.
Then something happens and all of her compensatory mechanisms become too strained and they unravel. And she looks like a completely different kid. Like a kid who is rigid. Like a kid who is socially inept. Like a kid who has impaired communication.
The reason I think think the concept of "recovery" is dangerous, is because if I believed she was "cured" or "recovered," I would likely see these instances as evidence that she was misbehaving, or not trying hard enough. If I thought she was cured or recovered, I would hold expectations that are unrealistic, perhaps even damaging.
Instead, I think it is important for parents to remember that their kid is compensating well. They have learned how to function effectively. It is a wonderful thing, to be sure. But none of it is hardwired. None of it comes naturally. The autistic hardwiring is still the underlying neurology. That needs to be respected so that the effort that it takes to appear "normal" will always be appreciated. So that when their ability to compensate unravels, they will be treated with care, not criticism.
I believe all kids should be pushed and supported to their highest level of functioning. I am not talking about giving my daughter an "autism pass." I actually have high expectations, and she amazes me with her ability to meet and surpass them on a regular basis. But I will never forget or dismiss the extra effort it takes her.
What do others think? Again, I don't want to start a debate about cure/no cure, etc. I am more interested to hear the perspectives of others (either parents of kids who "pass" or adults who "pass").
ETA: or anyone else who has an opinion they would like to share.
