5 ms·

I couldn't get through the whole article... Partially because I am working and partially because the issue of Autism is difficult for me to read about. My daug

by hoopism 12y ago

I couldn't get through the whole article... Partially because I am working and partially because the issue of Autism is difficult for me to read about. My daughter was diagnosed at 16 months. She is now 20 months, so this is all very new to us. The one thing I have learned is that if you have met one person with Autism then you have met one person with Autism. It's important to realize that Autism is a spectrum and therefore the needs of an individual can be very different and varied. The other thing I would like people who are fortunate enough to not have encountered Autism is that early and intense therapy is ABSOLUTELY crucial. If you are a parent and suspect something, DO NOT hesitate. If you see legislation that adds support for young children then support it. In the long run society will save a lot more money and lives if we address this early rather than later.

fecak 12y ago
My daughter just turned 11, and she was diagnosed just after she turned 2. Catching it at 16 months is a big advantage in the long run. A lot can change over time, and we've seen kids lose their diagnosis or have it altered. If you aren't yet involved with any parent groups, consider that option. I've found the community to be warm, helpful, and willing to share information or services, resources, programs, etc. Good luck to you and your daughter.
- hoopism 12y ago
  We're fortunate that we have the support (family and education) to allow us to explore opportunities. We are very engaged with the community and are engaged in every therapy available to us. My mind though, when not consumed with doing all we can for my daughter, drifts to those parents who don't have families to help. Parents who can't afford to have one parents stay at home (my wife left her career as a Pharmacist, a big part of who she is). It's crushing to think that there are kids who could lose a diagnosis if they had the opportunities my child has. My daughter spends 30 hours a week in various therapies between speech, OT, PT and ABA. She's making amazing progress... but how do you scale that for a general population? My perspective on society and the services that ought to be a right has changed drastically. It's a shame it took something like this for me to see it.
jMyles 12y ago
What sorts of therapy are useful for a child at that age?
- fecak 12y ago
  They usually start with ABA (applied behavior analysis) and perhaps occupational therapy and speech therapy. It's fairly intensive at an early age because early intervention can make a huge difference. Therapists are coming in and out of your house or child's classroom a few times a day.
  - hoopism 12y ago
    The key is that < 3 years your brain has a lot of elasticity. If you are able to address the social and joint attention skills early it can make all the difference. Rather than training a child you can actually make it natural for them. Even after 3 there is a tremendous value to these therapies... it's never too late.
    - jstoiko 12y ago
      My wife is BCBA certified. She told me once that for certain kids, early therapy can make the difference between a kid going to University and a kid having to be institutionalized.
- hoopism 12y ago
  Depends on their deficiency. Most the time they have several delays developmentally. Our daughter has difficulty in path planning (fine motor). She was delayed walking and as a result had low muscle tone. Her attention (eye contact, joint attention) was also poor, which made learning other skills difficult. Since very young she would hyper focus on objects like strings and would tantrum when you try to transition her to new task or object. The objects were usually not appropriate or typical and her interaction with them was not considered typical (repetitive behavior). She now walks, has great eye contact and joint attention and is learning new words everyday (though still has some speech issues). She also plays more creatively and appropriately with toys... it's really opened up so much for her. Mostly these are play based therapies. The difference is the way that tasks are broken down. For a lot of kids you have to master and work on REALLY basic steps for a long time before moving to even basic things (like stacking rings or requesting an object). Any kid would benefit from these therapies, there is no magic to them. It's time and observation. We set goals for her then work with specialists to break down the operations and work with her to master fundamentals. Each new skill tends to unlock all sorts of other skills. ABA is a trial based therapy that has a lot of good and bad information out there about it. It is basically what I just described but in a much more structured and documented manner. It's one of the more researched methods of treatment and has been proven to be highly effective. It's again tailored to the child, so there is no good way of describing other than to say that it emphasizes mastery of skills, errorless learning (no negative responses for wrong behavior) and intense hours (some kids do 40 hours of ABA a week alone). As I mentioned, each kid really has their own set of issues, so it's tough to say what will work for each kid. I read a few Behaviorist books when she was diagnosed. A lot of the therapies/techniques are really just good parenting advice.
deleted 12y ago
[deleted]
saddington 12y ago
Just wanted to encourage you that autists can still have very meaningful and fulfilling lives... i am proof of that. http://john.do/autism/ http://john.do/autism/ i mean... shit... even this autistic adult got on the front page of hacker news! fuck yeah. http://john.do/fp-hn/ http://john.do/fp-hn/ and i did it twice in the same week... :)
- dyscrete 12y ago
  I just read your post, and though it may be hard sometimes just remember we are all unique and you shouldn't use autism to define you as a person. A lot of intelligent people experience these symptoms and psychs are always looking for your weaknesses to put labels on and prescribe pills for (I've been diagnosed differently 3 times, once with Aspergers). You are a smart individual, you don't need Aspergers to tell you that. Good read nonetheless, thank you for sharing. EDIT: changed some wording
  - mst 12y ago
    I know some people who consider it an important part of their identity - because, as exch says upthread, "All the weird and inexplicable things I saw in my past, suddenly fit. Like a giant puzzle you've been trying to solve for 30 years and in a matter of weeks, every piece just falls into place." I also know plenty of people who're diagnosed and consider it one fact among many and not worth much mention. So I'm not sure "shouldn't" is quite accurate. Maybe "even if autism is, to you, an important part of your identity, remember that a diagnosis is meant to enable you instead of restrict you" better expresses the meaning I -think- the rest of what you're saying implies you were aiming for?
    - comex 12y ago
      On a related note, here is an essay written by a high-functioning autistic person which I read once and found illuminating on the identity issue: https://www.fysh.org/~zefram/allism/allism_intro.txt https://www.fysh.org/~zefram/allism/allism_intro.txt
_almosnow 12y ago
How can autism be diagnosed so early?
- fecak 12y ago
  There are some tell-tale signs to be aware of in children or infants. Lack of speech, lack of eye contact, non-reactive to environment (seems deaf), no pointing. Repetitive behaviors and obsessions/compulsions can start to show early as well. Even things like toe-walking are very common (though toe-walking isn't exclusive to autism, but can be an indicator).
- hoopism 12y ago
  A Neuropsychologist will usually administer several standard tests. At this age the tests are very unreliable. There are other signs of behavior they looks for. Admittedly, we went into it thinking "maybe it's Autism, maybe it's not... but we can't get therapy for the delays unless we get the diagnosis". Having read substantially more and seen more children on the spectrum it's pretty clear. But it's a good question and by no means an exact science. I recall a study that was done on early intervention (12 months I believe) where the majority of children diagnosed with Autism were able to shed their diagnosis by age 3 (or something like that). The trouble is that the initial diagnosis may have just been wrong... it may have just been a delay caused by something else. The good thing is that the therapy is beneficial for anyone... so there's little need (beyond monetarily) to be concerned with misdiagnosis. EDIT: fecak's list is spot on.
- eutropia 12y ago
  More promising on young children than tricky psychological evaluations, a professor at my university has shown that there are ways to diagnose autism from structural differences in the brain using MRI images and image processing techniques. http://dx.doi.org/10.1109/ISBI.2007.356861 http://dx.doi.org/10.1109/ISBI.2007.356861 http://dx.doi.org/10.1109/ISBI.2007.357110 http://dx.doi.org/10.1109/ISBI.2007.357110 http://dx.doi.org/10.1007/s10803-008-0681-4 http://dx.doi.org/10.1007/s10803-008-0681-4 http://dx.doi.org/10.1007/978-3-540-75759-7_107 http://dx.doi.org/10.1007/978-3-540-75759-7_107 http://dx.doi.org/10.1177/1362361310386506 http://dx.doi.org/10.1177/1362361310386506
innguest 12y ago
Check out what Dr Greg Siegle has to say about autism. He was a geek in IT prior to becoming a neuroscientist. He addresses autism in the last 20 minutes of this talk: https://www.youtube.com/watch?v=AjqrNPomIzg https://www.youtube.com/watch?v=AjqrNPomIzg

by hoopism 12y ago

fecak 12y ago

My daughter just turned 11, and she was diagnosed just after she turned 2. Catching it at 16 months is a big advantage in the long run. A lot can change over time, and we've seen kids lose their diagnosis or have it altered. If you aren't yet involved with any parent groups, consider that option. I've found the community to be warm, helpful, and willing to share information or services, resources, programs, etc. Good luck to you and your daughter.

hoopism 12y ago
We're fortunate that we have the support (family and education) to allow us to explore opportunities. We are very engaged with the community and are engaged in every therapy available to us. My mind though, when not consumed with doing all we can for my daughter, drifts to those parents who don't have families to help. Parents who can't afford to have one parents stay at home (my wife left her career as a Pharmacist, a big part of who she is). It's crushing to think that there are kids who could lose a diagnosis if they had the opportunities my child has. My daughter spends 30 hours a week in various therapies between speech, OT, PT and ABA. She's making amazing progress... but how do you scale that for a general population? My perspective on society and the services that ought to be a right has changed drastically. It's a shame it took something like this for me to see it.

jMyles 12y ago

What sorts of therapy are useful for a child at that age?

fecak 12y ago
They usually start with ABA (applied behavior analysis) and perhaps occupational therapy and speech therapy. It's fairly intensive at an early age because early intervention can make a huge difference. Therapists are coming in and out of your house or child's classroom a few times a day.
- hoopism 12y ago
  The key is that < 3 years your brain has a lot of elasticity. If you are able to address the social and joint attention skills early it can make all the difference. Rather than training a child you can actually make it natural for them. Even after 3 there is a tremendous value to these therapies... it's never too late.
  - jstoiko 12y ago
    My wife is BCBA certified. She told me once that for certain kids, early therapy can make the difference between a kid going to University and a kid having to be institutionalized.
hoopism 12y ago
Depends on their deficiency. Most the time they have several delays developmentally. Our daughter has difficulty in path planning (fine motor). She was delayed walking and as a result had low muscle tone. Her attention (eye contact, joint attention) was also poor, which made learning other skills difficult. Since very young she would hyper focus on objects like strings and would tantrum when you try to transition her to new task or object. The objects were usually not appropriate or typical and her interaction with them was not considered typical (repetitive behavior). She now walks, has great eye contact and joint attention and is learning new words everyday (though still has some speech issues). She also plays more creatively and appropriately with toys... it's really opened up so much for her. Mostly these are play based therapies. The difference is the way that tasks are broken down. For a lot of kids you have to master and work on REALLY basic steps for a long time before moving to even basic things (like stacking rings or requesting an object). Any kid would benefit from these therapies, there is no magic to them. It's time and observation. We set goals for her then work with specialists to break down the operations and work with her to master fundamentals. Each new skill tends to unlock all sorts of other skills. ABA is a trial based therapy that has a lot of good and bad information out there about it. It is basically what I just described but in a much more structured and documented manner. It's one of the more researched methods of treatment and has been proven to be highly effective. It's again tailored to the child, so there is no good way of describing other than to say that it emphasizes mastery of skills, errorless learning (no negative responses for wrong behavior) and intense hours (some kids do 40 hours of ABA a week alone). As I mentioned, each kid really has their own set of issues, so it's tough to say what will work for each kid. I read a few Behaviorist books when she was diagnosed. A lot of the therapies/techniques are really just good parenting advice.

deleted 12y ago

[deleted]

saddington 12y ago

Just wanted to encourage you that autists can still have very meaningful and fulfilling lives... i am proof of that. http://john.do/autism/ http://john.do/autism/ i mean... shit... even this autistic adult got on the front page of hacker news! fuck yeah. http://john.do/fp-hn/ http://john.do/fp-hn/ and i did it twice in the same week... :)

dyscrete 12y ago
I just read your post, and though it may be hard sometimes just remember we are all unique and you shouldn't use autism to define you as a person. A lot of intelligent people experience these symptoms and psychs are always looking for your weaknesses to put labels on and prescribe pills for (I've been diagnosed differently 3 times, once with Aspergers). You are a smart individual, you don't need Aspergers to tell you that. Good read nonetheless, thank you for sharing. EDIT: changed some wording
- mst 12y ago
  I know some people who consider it an important part of their identity - because, as exch says upthread, "All the weird and inexplicable things I saw in my past, suddenly fit. Like a giant puzzle you've been trying to solve for 30 years and in a matter of weeks, every piece just falls into place." I also know plenty of people who're diagnosed and consider it one fact among many and not worth much mention. So I'm not sure "shouldn't" is quite accurate. Maybe "even if autism is, to you, an important part of your identity, remember that a diagnosis is meant to enable you instead of restrict you" better expresses the meaning I -think- the rest of what you're saying implies you were aiming for?
  - comex 12y ago
    On a related note, here is an essay written by a high-functioning autistic person which I read once and found illuminating on the identity issue: https://www.fysh.org/~zefram/allism/allism_intro.txt https://www.fysh.org/~zefram/allism/allism_intro.txt

_almosnow 12y ago

How can autism be diagnosed so early?

fecak 12y ago
There are some tell-tale signs to be aware of in children or infants. Lack of speech, lack of eye contact, non-reactive to environment (seems deaf), no pointing. Repetitive behaviors and obsessions/compulsions can start to show early as well. Even things like toe-walking are very common (though toe-walking isn't exclusive to autism, but can be an indicator).
hoopism 12y ago
A Neuropsychologist will usually administer several standard tests. At this age the tests are very unreliable. There are other signs of behavior they looks for. Admittedly, we went into it thinking "maybe it's Autism, maybe it's not... but we can't get therapy for the delays unless we get the diagnosis". Having read substantially more and seen more children on the spectrum it's pretty clear. But it's a good question and by no means an exact science. I recall a study that was done on early intervention (12 months I believe) where the majority of children diagnosed with Autism were able to shed their diagnosis by age 3 (or something like that). The trouble is that the initial diagnosis may have just been wrong... it may have just been a delay caused by something else. The good thing is that the therapy is beneficial for anyone... so there's little need (beyond monetarily) to be concerned with misdiagnosis. EDIT: fecak's list is spot on.
eutropia 12y ago
More promising on young children than tricky psychological evaluations, a professor at my university has shown that there are ways to diagnose autism from structural differences in the brain using MRI images and image processing techniques. http://dx.doi.org/10.1109/ISBI.2007.356861 http://dx.doi.org/10.1109/ISBI.2007.356861 http://dx.doi.org/10.1109/ISBI.2007.357110 http://dx.doi.org/10.1109/ISBI.2007.357110 http://dx.doi.org/10.1007/s10803-008-0681-4 http://dx.doi.org/10.1007/s10803-008-0681-4 http://dx.doi.org/10.1007/978-3-540-75759-7_107 http://dx.doi.org/10.1007/978-3-540-75759-7_107 http://dx.doi.org/10.1177/1362361310386506 http://dx.doi.org/10.1177/1362361310386506

innguest 12y ago

Check out what Dr Greg Siegle has to say about autism. He was a geek in IT prior to becoming a neuroscientist. He addresses autism in the last 20 minutes of this talk: https://www.youtube.com/watch?v=AjqrNPomIzg https://www.youtube.com/watch?v=AjqrNPomIzg