Parents, Children, Autism: Education or Obsession?

I've been posting a lot of articles about autism lately, almost exclusively.  Autism is a huge part of my life because of my son.  I spend a lot of time trying to work out ways to better his position, plan his future, and prepare for the eventualities that come with a child with special needs.  

Of course, as I go through the research and study, discussions and learning theories, I begin to wonder whether or not I'm allowing autism to consume my entire life.  Am I?

This is a discussion that is primarily for my own sanity, but I thought I would share for all those parents, friends, family members, etc. that see autism in your personal world and wonder how it impacts that world.  

Every day I live with autism and the results of a son who has difficulty communicating.  Actively, I'm trying to help him learn to communicate as best he can.  I try to work on his writing skills, spelling, and written vocabulary, and soon I'll be trying to help him with typing and playing an instrument.  Ultimately, I want to have a son that is well able to express himself without assistance of other people, either through an assistive application on a personal, portable device or ideally through his own speech.  

Passively, I'm accepting the situation for what it is:  my son, whom I love very much, needs special attention.  Regardless of what I do actively, this fact does not change.  I could try to ignore it, but it does no good for my son.  I could try to beat him into submission, but that does not work for autistic children, who are unable to recognize anger, frustration, or other social indicators.  

Recently, I read an article by a grandparent to an advice column, concerned that her grandchild was taking over the family.  The article then had a nice long discussion on behavior modification and better discipline within the home, but had no advice on how to accomplish these goals for a parent with an autistic child.  Instead it made the autistic child the villain, willfully controlling his parent's lives.  

Now, I don't know the full details of the family life the article was referring to, and I doubt either the grandparent or the advice columnist do either, and so I won't comment on their situation or their ideas of discipline.  But it did awaken a sense of anger in me.  

If your child is autistic, your life is going to seem very different than from other parents.  Where cousins will start talking, your child does not.  Where other parents start to complain about their child's talking back to them, telling them no, yelling, and such, all you can do is nod and feel a little hurt that your child doesn't speak to you.  

You want to do anything you can for your child, and so you spend a lot of time doing research, helping with therapy, etc.  You feel as though you are in a race against time, trying to get your child caught up as quickly as possible to other children for their benefit.  You don't want them to grow up being teased, bullied, and shunned because of who they are.  You want them to have an equal opportunity in this world.

So is that obsessing over autism?  Perhaps, but do you obsess over your children?  Do you want them to be as educated as possible when they start school?  Do you read to them, help them learn to write, work with their speech, and teach them useful skills?  Of course you do, because you love your child.  

Now, just imagine that your child can't mimic what you do, and doesn't imitate.  You have to go through the same steps hundreds of times, so that they learn the routine.  This takes time, a lot more time than just showing them a couple of times and have them get it.  

Now, imagine your child is easily distracted by any combination of action and sound, and doesn't stay interested unless there is a combination of action and sound.  How much more difficult would that be?  Ask any parent of an autistic child, and they will tell you.

Anyway, that is me venting.  Next time you start to complain about how hard it is to teach your "normal" child something to a parent with an autistic child, please don't get offended when they just nod and smile.  It's not that they don't care, it's just that they have dealt with far more than you can imagine already, and find your complaints a bit less compelling than you may have hoped.

Parents, Children, Autism: Education or Obsession?

I've been posting a lot of articles about autism lately, almost exclusively.  Autism is a huge part of my life because of my son.  I spend a lot of time trying to work out ways to better his position, plan his future, and prepare for the eventualities that come with a child with special needs.  

Of course, as I go through the research and study, discussions and learning theories, I begin to wonder whether or not I'm allowing autism to consume my entire life.  Am I?

This is a discussion that is primarily for my own sanity, but I thought I would share for all those parents, friends, family members, etc. that see autism in your personal world and wonder how it impacts that world.  

Every day I live with autism and the results of a son who has difficulty communicating.  Actively, I'm trying to help him learn to communicate as best he can.  I try to work on his writing skills, spelling, and written vocabulary, and soon I'll be trying to help him with typing and playing an instrument.  Ultimately, I want to have a son that is well able to express himself without assistance of other people, either through an assistive application on a personal, portable device or ideally through his own speech.  

Passively, I'm accepting the situation for what it is:  my son, whom I love very much, needs special attention.  Regardless of what I do actively, this fact does not change.  I could try to ignore it, but it does no good for my son.  I could try to beat him into submission, but that does not work for autistic children, who are unable to recognize anger, frustration, or other social indicators.  

Recently, I read an article by a grandparent to an advice column, concerned that her grandchild was taking over the family.  The article then had a nice long discussion on behavior modification and better discipline within the home, but had no advice on how to accomplish these goals for a parent with an autistic child.  Instead it made the autistic child the villain, willfully controlling his parent's lives.  

Now, I don't know the full details of the family life the article was referring to, and I doubt either the grandparent or the advice columnist do either, and so I won't comment on their situation or their ideas of discipline.  But it did awaken a sense of anger in me.  

If your child is autistic, your life is going to seem very different than from other parents.  Where cousins will start talking, your child does not.  Where other parents start to complain about their child's talking back to them, telling them no, yelling, and such, all you can do is nod and feel a little hurt that your child doesn't speak to you.  

You want to do anything you can for your child, and so you spend a lot of time doing research, helping with therapy, etc.  You feel as though you are in a race against time, trying to get your child caught up as quickly as possible to other children for their benefit.  You don't want them to grow up being teased, bullied, and shunned because of who they are.  You want them to have an equal opportunity in this world.

So is that obsessing over autism?  Perhaps, but do you obsess over your children?  Do you want them to be as educated as possible when they start school?  Do you read to them, help them learn to write, work with their speech, and teach them useful skills?  Of course you do, because you love your child.  

Now, just imagine that your child can't mimic what you do, and doesn't imitate.  You have to go through the same steps hundreds of times, so that they learn the routine.  This takes time, a lot more time than just showing them a couple of times and have them get it.  

Now, imagine your child is easily distracted by any combination of action and sound, and doesn't stay interested unless there is a combination of action and sound.  How much more difficult would that be?  Ask any parent of an autistic child, and they will tell you.

Anyway, that is me venting.  Next time you start to complain about how hard it is to teach your "normal" child something to a parent with an autistic child, please don't get offended when they just nod and smile.  It's not that they don't care, it's just that they have dealt with far more than you can imagine already, and find your complaints a bit less compelling than you may have hoped.

Parents, Children, Autism: Education or Obsession?

I've been posting a lot of articles about autism lately, almost exclusively.  Autism is a huge part of my life because of my son.  I spend a lot of time trying to work out ways to better his position, plan his future, and prepare for the eventualities that come with a child with special needs.  

Of course, as I go through the research and study, discussions and learning theories, I begin to wonder whether or not I'm allowing autism to consume my entire life.  Am I?

This is a discussion that is primarily for my own sanity, but I thought I would share for all those parents, friends, family members, etc. that see autism in your personal world and wonder how it impacts that world.  

Every day I live with autism and the results of a son who has difficulty communicating.  Actively, I'm trying to help him learn to communicate as best he can.  I try to work on his writing skills, spelling, and written vocabulary, and soon I'll be trying to help him with typing and playing an instrument.  Ultimately, I want to have a son that is well able to express himself without assistance of other people, either through an assistive application on a personal, portable device or ideally through his own speech.  

Passively, I'm accepting the situation for what it is:  my son, whom I love very much, needs special attention.  Regardless of what I do actively, this fact does not change.  I could try to ignore it, but it does no good for my son.  I could try to beat him into submission, but that does not work for autistic children, who are unable to recognize anger, frustration, or other social indicators.  

Recently, I read an article by a grandparent to an advice column, concerned that her grandchild was taking over the family.  The article then had a nice long discussion on behavior modification and better discipline within the home, but had no advice on how to accomplish these goals for a parent with an autistic child.  Instead it made the autistic child the villain, willfully controlling his parent's lives.  

Now, I don't know the full details of the family life the article was referring to, and I doubt either the grandparent or the advice columnist do either, and so I won't comment on their situation or their ideas of discipline.  But it did awaken a sense of anger in me.  

If your child is autistic, your life is going to seem very different than from other parents.  Where cousins will start talking, your child does not.  Where other parents start to complain about their child's talking back to them, telling them no, yelling, and such, all you can do is nod and feel a little hurt that your child doesn't speak to you.  

You want to do anything you can for your child, and so you spend a lot of time doing research, helping with therapy, etc.  You feel as though you are in a race against time, trying to get your child caught up as quickly as possible to other children for their benefit.  You don't want them to grow up being teased, bullied, and shunned because of who they are.  You want them to have an equal opportunity in this world.

So is that obsessing over autism?  Perhaps, but do you obsess over your children?  Do you want them to be as educated as possible when they start school?  Do you read to them, help them learn to write, work with their speech, and teach them useful skills?  Of course you do, because you love your child.  

Now, just imagine that your child can't mimic what you do, and doesn't imitate.  You have to go through the same steps hundreds of times, so that they learn the routine.  This takes time, a lot more time than just showing them a couple of times and have them get it.  

Now, imagine your child is easily distracted by any combination of action and sound, and doesn't stay interested unless there is a combination of action and sound.  How much more difficult would that be?  Ask any parent of an autistic child, and they will tell you.

Anyway, that is me venting.  Next time you start to complain about how hard it is to teach your "normal" child something to a parent with an autistic child, please don't get offended when they just nod and smile.  It's not that they don't care, it's just that they have dealt with far more than you can imagine already, and find your complaints a bit less compelling than you may have hoped.

Animation and Autism: Discovering the Autism Learning Method

A lot of people are afraid and confused with autistic children.  Why?  Because their learning process is very different from the traditional methods. How so?  That's outlined by this research done at the Yale Child Study Center.

Children traditionally learn through imitation.  They track adult movement, and try to duplicate it.  As such, children are able to learn without a lot of formal instruction or clear descriptions of how a process should proceed.  It's actually very convenient for parents, because outside of trying to explain complex situations, children pretty much learn their social interactions on their own.  

But that isn't true with autistic children.  Instead of tracking and imitating a process, they are more interested with audio-visual stimulation, such as a sound that accompanies a movement.  By circumventing the traditional or typical learning method for social interaction, they become less social and less verbal.  Think of it as looking at an animation.  Autistic children do not find excitement with a movement that is not accompanied by sound, and so they need both the sound and the action to have their attention captured. 

So what is a parent to do with an autistic child?  They need to teach the child how to interact in the world socially, and that means working at skills that most children learn through imitation.  

Communication is a big step, requiring the parent and care-giver to use alternative methods of communication, such as picture exchanges or sign language.  By adding a tactile action to a verbal communication, autistic children can better pick up the communication skill.  

Another is social interaction, like eye contact.  Here you need to add an action to a verbal request.  I've found that tickling my son helps by drawing his attention, and then I will put my face up close to his, touch his nose, and look him in the eye.  He then eventually started to keep eye contact with me, expecting the same action to happen again.  It worked well for my son, and something similar may help your child.  

And finally, writing.  While some children can just start to duplicate the writing method by watching a parent, in order to reach your autistic child you need to explain the process of writing to them, or say the letter while helping them write.  My son does well with the letter names, though his Preschool teacher suggested that we try using the same description method that they use, for continuity.  Both ways my son is learning to write his name, and is already starting to learn how to spell.  

The best part of the article I read regarding this study was the last phrase: 

"There is nothing in our research that in any way conveys a sense that children [with autism] are any less human, any less deserving of our love and respect, or any less of anything at all. It is that the way they seem to learn about this world is rather different than the strategies used by their peers. By better understanding how they do this, the better we will be able to reach them, and like in any personal relationship, the better they will be able to reach us. ... Their different perspective might give us solutions that others, with the typical mind and brain, might never see."

This is too true!  Autistic children are not stupid because they don't learn the same way other children do.  They are not creatures, subhuman beings that should be approached with fear.  They are people, just like everyone else, but people that learn differently.  It's more work to teach an autistic child, but it's also a lot more fun!

Animation and Autism: Discovering the Autism Learning Method

A lot of people are afraid and confused with autistic children.  Why?  Because their learning process is very different from the traditional methods. How so?  That's outlined by this research done at the Yale Child Study Center.

Children traditionally learn through imitation.  They track adult movement, and try to duplicate it.  As such, children are able to learn without a lot of formal instruction or clear descriptions of how a process should proceed.  It's actually very convenient for parents, because outside of trying to explain complex situations, children pretty much learn their social interactions on their own.  

But that isn't true with autistic children.  Instead of tracking and imitating a process, they are more interested with audio-visual stimulation, such as a sound that accompanies a movement.  By circumventing the traditional or typical learning method for social interaction, they become less social and less verbal.  Think of it as looking at an animation.  Autistic children do not find excitement with a movement that is not accompanied by sound, and so they need both the sound and the action to have their attention captured. 

So what is a parent to do with an autistic child?  They need to teach the child how to interact in the world socially, and that means working at skills that most children learn through imitation.  

Communication is a big step, requiring the parent and care-giver to use alternative methods of communication, such as picture exchanges or sign language.  By adding a tactile action to a verbal communication, autistic children can better pick up the communication skill.  

Another is social interaction, like eye contact.  Here you need to add an action to a verbal request.  I've found that tickling my son helps by drawing his attention, and then I will put my face up close to his, touch his nose, and look him in the eye.  He then eventually started to keep eye contact with me, expecting the same action to happen again.  It worked well for my son, and something similar may help your child.  

And finally, writing.  While some children can just start to duplicate the writing method by watching a parent, in order to reach your autistic child you need to explain the process of writing to them, or say the letter while helping them write.  My son does well with the letter names, though his Preschool teacher suggested that we try using the same description method that they use, for continuity.  Both ways my son is learning to write his name, and is already starting to learn how to spell.  

The best part of the article I read regarding this study was the last phrase: 

"There is nothing in our research that in any way conveys a sense that children [with autism] are any less human, any less deserving of our love and respect, or any less of anything at all. It is that the way they seem to learn about this world is rather different than the strategies used by their peers. By better understanding how they do this, the better we will be able to reach them, and like in any personal relationship, the better they will be able to reach us. ... Their different perspective might give us solutions that others, with the typical mind and brain, might never see."

This is too true!  Autistic children are not stupid because they don't learn the same way other children do.  They are not creatures, subhuman beings that should be approached with fear.  They are people, just like everyone else, but people that learn differently.  It's more work to teach an autistic child, but it's also a lot more fun!

Animation and Autism: Discovering the Autism Learning Method

A lot of people are afraid and confused with autistic children.  Why?  Because their learning process is very different from the traditional methods. How so?  That's outlined by this research done at the Yale Child Study Center.

Children traditionally learn through imitation.  They track adult movement, and try to duplicate it.  As such, children are able to learn without a lot of formal instruction or clear descriptions of how a process should proceed.  It's actually very convenient for parents, because outside of trying to explain complex situations, children pretty much learn their social interactions on their own.  

But that isn't true with autistic children.  Instead of tracking and imitating a process, they are more interested with audio-visual stimulation, such as a sound that accompanies a movement.  By circumventing the traditional or typical learning method for social interaction, they become less social and less verbal.  Think of it as looking at an animation.  Autistic children do not find excitement with a movement that is not accompanied by sound, and so they need both the sound and the action to have their attention captured. 

So what is a parent to do with an autistic child?  They need to teach the child how to interact in the world socially, and that means working at skills that most children learn through imitation.  

Communication is a big step, requiring the parent and care-giver to use alternative methods of communication, such as picture exchanges or sign language.  By adding a tactile action to a verbal communication, autistic children can better pick up the communication skill.  

Another is social interaction, like eye contact.  Here you need to add an action to a verbal request.  I've found that tickling my son helps by drawing his attention, and then I will put my face up close to his, touch his nose, and look him in the eye.  He then eventually started to keep eye contact with me, expecting the same action to happen again.  It worked well for my son, and something similar may help your child.  

And finally, writing.  While some children can just start to duplicate the writing method by watching a parent, in order to reach your autistic child you need to explain the process of writing to them, or say the letter while helping them write.  My son does well with the letter names, though his Preschool teacher suggested that we try using the same description method that they use, for continuity.  Both ways my son is learning to write his name, and is already starting to learn how to spell.  

The best part of the article I read regarding this study was the last phrase: 

"There is nothing in our research that in any way conveys a sense that children [with autism] are any less human, any less deserving of our love and respect, or any less of anything at all. It is that the way they seem to learn about this world is rather different than the strategies used by their peers. By better understanding how they do this, the better we will be able to reach them, and like in any personal relationship, the better they will be able to reach us. ... Their different perspective might give us solutions that others, with the typical mind and brain, might never see."

This is too true!  Autistic children are not stupid because they don't learn the same way other children do.  They are not creatures, subhuman beings that should be approached with fear.  They are people, just like everyone else, but people that learn differently.  It's more work to teach an autistic child, but it's also a lot more fun!

Autism Support Bill in the US House: Let's Get It Right!

On Wednesday Representative Kay Granger of Texas introduced the HR 1707:  Helping HANDS for Autism Act of 2009.  Essentially, the bill is designed to provide funding for community outreach programs that will assist parents, caregivers, and adults with Autism find the help and support they need in their community.  The program is quite extensive, and is quite exciting.  Organizations are not limited to the number of grants to which they can apply, though the grants are limited by specific appropriations funding.  

The thing that really excites me about this bill, however, is the mentoring aspect for parents and caregivers.  I have long been a believer in the involvement of parents in the education of autistic children.  They generally can help their child do more advanced things, because their child naturally trusts their parents than, say, a clinical psychologist.  The real way to help families with Autism is to provide them with the tools they need, instead of shipping the children off to schools where teachers need to take the place of parents.  Schools are great, but without the reinforcing parental involvement, they can only do so much.  

There are a lot of other things that this bill supports, and I would highly recommend all those parents, teachers, and caregivers who work with autistic children and adults to read through, and send your recommendations to your US Representatives.  Let them know that this is really important, it needs to be done right.  

I'm going to pester my representative to get involved as best he can, as well as my Senators.  If anyone out there has read the bill and have suggestions, feel free to post them!  I'll send them on to my Representative, if you will send it on to yours.  Let's make sure this Autism Bill doesn't have the teeth cut out of it, and really helps those on the Spectrum.  

And finally, I would like to thank Representative Kay Granger and those who have offered to co-sponsor the bill for their courage in addressing Autism.  Just chucking money at the problem doesn't fix it, but having a real plan will definitely be a necessity.  This bill has the feeling of a real plan for those on the Spectrum from their initial, early diagnosis throughout their adult life.

Autism Support Bill in the US House: Let's Get It Right!

On Wednesday Representative Kay Granger of Texas introduced the HR 1707:  Helping HANDS for Autism Act of 2009.  Essentially, the bill is designed to provide funding for community outreach programs that will assist parents, caregivers, and adults with Autism find the help and support they need in their community.  The program is quite extensive, and is quite exciting.  Organizations are not limited to the number of grants to which they can apply, though the grants are limited by specific appropriations funding.  

The thing that really excites me about this bill, however, is the mentoring aspect for parents and caregivers.  I have long been a believer in the involvement of parents in the education of autistic children.  They generally can help their child do more advanced things, because their child naturally trusts their parents than, say, a clinical psychologist.  The real way to help families with Autism is to provide them with the tools they need, instead of shipping the children off to schools where teachers need to take the place of parents.  Schools are great, but without the reinforcing parental involvement, they can only do so much.  

There are a lot of other things that this bill supports, and I would highly recommend all those parents, teachers, and caregivers who work with autistic children and adults to read through, and send your recommendations to your US Representatives.  Let them know that this is really important, it needs to be done right.  

I'm going to pester my representative to get involved as best he can, as well as my Senators.  If anyone out there has read the bill and have suggestions, feel free to post them!  I'll send them on to my Representative, if you will send it on to yours.  Let's make sure this Autism Bill doesn't have the teeth cut out of it, and really helps those on the Spectrum.  

And finally, I would like to thank Representative Kay Granger and those who have offered to co-sponsor the bill for their courage in addressing Autism.  Just chucking money at the problem doesn't fix it, but having a real plan will definitely be a necessity.  This bill has the feeling of a real plan for those on the Spectrum from their initial, early diagnosis throughout their adult life.

Autism Support Bill in the US House: Let's Get It Right!

On Wednesday Representative Kay Granger of Texas introduced the HR 1707:  Helping HANDS for Autism Act of 2009.  Essentially, the bill is designed to provide funding for community outreach programs that will assist parents, caregivers, and adults with Autism find the help and support they need in their community.  The program is quite extensive, and is quite exciting.  Organizations are not limited to the number of grants to which they can apply, though the grants are limited by specific appropriations funding.  

The thing that really excites me about this bill, however, is the mentoring aspect for parents and caregivers.  I have long been a believer in the involvement of parents in the education of autistic children.  They generally can help their child do more advanced things, because their child naturally trusts their parents than, say, a clinical psychologist.  The real way to help families with Autism is to provide them with the tools they need, instead of shipping the children off to schools where teachers need to take the place of parents.  Schools are great, but without the reinforcing parental involvement, they can only do so much.  

There are a lot of other things that this bill supports, and I would highly recommend all those parents, teachers, and caregivers who work with autistic children and adults to read through, and send your recommendations to your US Representatives.  Let them know that this is really important, it needs to be done right.  

I'm going to pester my representative to get involved as best he can, as well as my Senators.  If anyone out there has read the bill and have suggestions, feel free to post them!  I'll send them on to my Representative, if you will send it on to yours.  Let's make sure this Autism Bill doesn't have the teeth cut out of it, and really helps those on the Spectrum.  

And finally, I would like to thank Representative Kay Granger and those who have offered to co-sponsor the bill for their courage in addressing Autism.  Just chucking money at the problem doesn't fix it, but having a real plan will definitely be a necessity.  This bill has the feeling of a real plan for those on the Spectrum from their initial, early diagnosis throughout their adult life.

Autism and Education: What Parents Really Need to Know

Thus far on my blog I have spent a lot of time analyzing and debating the cause of Autism, the effects, and the research behind them.  This is all fascinating and fun to talk about (at least I hope so, it is for me), but parents out there that find out their child is Autistic are probably screaming:  So what!!  It doesn't change the now, and my child is in need of help.  What can I do as a parent to help my autistic child?

I've often asked myself this while searching for something that would help my son.  The problem with searching for help for an autistic child is that the spectrum is so wide, it's hard to find something effective for all.  For that reason, I'm going to qualify the steps that we have outlined in conjunction with my son's Preschool:  My son is very high functioning, but not verbal (yet very vocal!).  So here is what I would recommend for any parent with an autistic child: 

1. Have Your Child Evaluated:  Chances are you have had your child evaluated, which is how you know that your child has autism.  Remember that while it's possible to recognize one or two behaviors that are "autistic", there are a number of different conditions and syndromes that are very similar to Autism.  It's best if you have your child evaluated by a psychologist that works specifically with children with disabilities.  They are educated and trained to recognize the different spectrums and syndromes, and will be able to make a clinical diagnosis.  


2. Contact Your Public School District:  Chances are your school district will have at least information on autism services, if they do not offer them.  More often than not, they do offer services, both at the Preschool and K-12 levels.  And before you start going off about how public schools fail our children, most public schools have Special Education teachers that became special ed teachers for a reason:  a member of their family has special needs.  That generally means they are determined to make a difference for special education students.  No, you generally will not find the Football coach teaching Special Ed, so your child's teacher will not be distracted by seasonal events.  


3. Have A Special Education Team Evaluate Your Child:  Most Special Education teams that I am aware of include the Special Education teacher, a Speech and Language specialist, an Occupational Therapist, and a General Education  specialist.  They work together to evaluate the progress of their students by setting developmental goals for the student and evaluating their progress.  Our son's preschool has this team, each of whom want the best for our son.  They work with us to evaluate his goals, so that we not only know what the goals are, but what the process they will take him through is, and what progress we can expect.  


4. Participate In Your Child's Education:  This is a general rule for all parents.  Our education system is broken, but not because of teachers.  For the most part, it is because of parents who would rather have someone else worry about their child's education than take that responsibility.  
   Well, guess what:  As a parent of a special needs child, your responsibility just doubled.  Children with special needs, like Autism, are NOT A WASTE OF RESOURCES!  it angers me when I hear parents complain, and some educators or legislators complain about the money it takes to help an autistic child succeed.  Autism does not make a child dumb, stupid, or instantly resign them to a life of street sweeping.  Autism just means that the child learns differently.  You need to cater to the child's learning process, so that they can succeed.  Get involved, learn what the teachers are doing, and how to continue that learning environment at home.  

Those are the things that I would recommend to any parent that has learned they have an autistic child and wants to know what to do next.  No, magic cures do not exist.  Don't expect autism to just go away, and don't just look from one day to the next even though it's often the simplest thing to do after a long bout of meltdowns and tantrums.  It is your responsibility as a parent to look forward in regards to your child's development.

Autism and Education: What Parents Really Need to Know

Thus far on my blog I have spent a lot of time analyzing and debating the cause of Autism, the effects, and the research behind them.  This is all fascinating and fun to talk about (at least I hope so, it is for me), but parents out there that find out their child is Autistic are probably screaming:  So what!!  It doesn't change the now, and my child is in need of help.  What can I do as a parent to help my autistic child?

I've often asked myself this while searching for something that would help my son.  The problem with searching for help for an autistic child is that the spectrum is so wide, it's hard to find something effective for all.  For that reason, I'm going to qualify the steps that we have outlined in conjunction with my son's Preschool:  My son is very high functioning, but not verbal (yet very vocal!).  So here is what I would recommend for any parent with an autistic child: 

1. Have Your Child Evaluated:  Chances are you have had your child evaluated, which is how you know that your child has autism.  Remember that while it's possible to recognize one or two behaviors that are "autistic", there are a number of different conditions and syndromes that are very similar to Autism.  It's best if you have your child evaluated by a psychologist that works specifically with children with disabilities.  They are educated and trained to recognize the different spectrums and syndromes, and will be able to make a clinical diagnosis.  


2. Contact Your Public School District:  Chances are your school district will have at least information on autism services, if they do not offer them.  More often than not, they do offer services, both at the Preschool and K-12 levels.  And before you start going off about how public schools fail our children, most public schools have Special Education teachers that became special ed teachers for a reason:  a member of their family has special needs.  That generally means they are determined to make a difference for special education students.  No, you generally will not find the Football coach teaching Special Ed, so your child's teacher will not be distracted by seasonal events.  


3. Have A Special Education Team Evaluate Your Child:  Most Special Education teams that I am aware of include the Special Education teacher, a Speech and Language specialist, an Occupational Therapist, and a General Education  specialist.  They work together to evaluate the progress of their students by setting developmental goals for the student and evaluating their progress.  Our son's preschool has this team, each of whom want the best for our son.  They work with us to evaluate his goals, so that we not only know what the goals are, but what the process they will take him through is, and what progress we can expect.  


4. Participate In Your Child's Education:  This is a general rule for all parents.  Our education system is broken, but not because of teachers.  For the most part, it is because of parents who would rather have someone else worry about their child's education than take that responsibility.  
   Well, guess what:  As a parent of a special needs child, your responsibility just doubled.  Children with special needs, like Autism, are NOT A WASTE OF RESOURCES!  it angers me when I hear parents complain, and some educators or legislators complain about the money it takes to help an autistic child succeed.  Autism does not make a child dumb, stupid, or instantly resign them to a life of street sweeping.  Autism just means that the child learns differently.  You need to cater to the child's learning process, so that they can succeed.  Get involved, learn what the teachers are doing, and how to continue that learning environment at home.  

Those are the things that I would recommend to any parent that has learned they have an autistic child and wants to know what to do next.  No, magic cures do not exist.  Don't expect autism to just go away, and don't just look from one day to the next even though it's often the simplest thing to do after a long bout of meltdowns and tantrums.  It is your responsibility as a parent to look forward in regards to your child's development.

Autism and Education: What Parents Really Need to Know

Thus far on my blog I have spent a lot of time analyzing and debating the cause of Autism, the effects, and the research behind them.  This is all fascinating and fun to talk about (at least I hope so, it is for me), but parents out there that find out their child is Autistic are probably screaming:  So what!!  It doesn't change the now, and my child is in need of help.  What can I do as a parent to help my autistic child?

I've often asked myself this while searching for something that would help my son.  The problem with searching for help for an autistic child is that the spectrum is so wide, it's hard to find something effective for all.  For that reason, I'm going to qualify the steps that we have outlined in conjunction with my son's Preschool:  My son is very high functioning, but not verbal (yet very vocal!).  So here is what I would recommend for any parent with an autistic child: 

1. Have Your Child Evaluated:  Chances are you have had your child evaluated, which is how you know that your child has autism.  Remember that while it's possible to recognize one or two behaviors that are "autistic", there are a number of different conditions and syndromes that are very similar to Autism.  It's best if you have your child evaluated by a psychologist that works specifically with children with disabilities.  They are educated and trained to recognize the different spectrums and syndromes, and will be able to make a clinical diagnosis.  


2. Contact Your Public School District:  Chances are your school district will have at least information on autism services, if they do not offer them.  More often than not, they do offer services, both at the Preschool and K-12 levels.  And before you start going off about how public schools fail our children, most public schools have Special Education teachers that became special ed teachers for a reason:  a member of their family has special needs.  That generally means they are determined to make a difference for special education students.  No, you generally will not find the Football coach teaching Special Ed, so your child's teacher will not be distracted by seasonal events.  


3. Have A Special Education Team Evaluate Your Child:  Most Special Education teams that I am aware of include the Special Education teacher, a Speech and Language specialist, an Occupational Therapist, and a General Education  specialist.  They work together to evaluate the progress of their students by setting developmental goals for the student and evaluating their progress.  Our son's preschool has this team, each of whom want the best for our son.  They work with us to evaluate his goals, so that we not only know what the goals are, but what the process they will take him through is, and what progress we can expect.  


4. Participate In Your Child's Education:  This is a general rule for all parents.  Our education system is broken, but not because of teachers.  For the most part, it is because of parents who would rather have someone else worry about their child's education than take that responsibility.  
   Well, guess what:  As a parent of a special needs child, your responsibility just doubled.  Children with special needs, like Autism, are NOT A WASTE OF RESOURCES!  it angers me when I hear parents complain, and some educators or legislators complain about the money it takes to help an autistic child succeed.  Autism does not make a child dumb, stupid, or instantly resign them to a life of street sweeping.  Autism just means that the child learns differently.  You need to cater to the child's learning process, so that they can succeed.  Get involved, learn what the teachers are doing, and how to continue that learning environment at home.  

Those are the things that I would recommend to any parent that has learned they have an autistic child and wants to know what to do next.  No, magic cures do not exist.  Don't expect autism to just go away, and don't just look from one day to the next even though it's often the simplest thing to do after a long bout of meltdowns and tantrums.  It is your responsibility as a parent to look forward in regards to your child's development.

Finally! An iPhone/iPod Touch App for Autistic Kids

The iPhone and iPod Touch have been truly amazing devices.  They allow a level of freedom for people that can't or don't want to use a stylus to still be able to use a mobile device.  They also make it more difficult to lose your stylus.  This means that it can be very useful for children with autism.  

The only problem:  there hasn't been a specific app designed for autistic children.  Until now, that is.  I found an app that I hope is the first of many more similar apps to come:  iConverse.  

The premise behind iConverse is pretty simple:  You have six icons that provide basic every day actions:  Restroom, Sleep, Drink, Eat, Sick, and Help.  The communication is basic, but it helps those who are unable to communicate verbally, or those who have not yet learned to communicate verbally, to do so.  

When pressing on the icon, text covers the icon to indicate the selection, as does a verbal sentence that is played on the device.  You can select either a male or female voice as well.  

While it seems simple, it's much needed.  Currently it's available in the Apple App Store for $4.99.  I should note that there is software out there for special devices or the computer that will do the same thing, but has a high cost of over $1,000.  This is ideal, because it's relatively inexpensive for both the device and the software. 

I'm sort of disappointed, but only in the fact that I didn't develop it first (I've been working on learning Objective C just for something like this).  Well, perhaps I'll build a custom bracer for the iPod Touch for my son's arm, should we need one for him all the time.

Finally! An iPhone/iPod Touch App for Autistic Kids

The iPhone and iPod Touch have been truly amazing devices.  They allow a level of freedom for people that can't or don't want to use a stylus to still be able to use a mobile device.  They also make it more difficult to lose your stylus.  This means that it can be very useful for children with autism.  

The only problem:  there hasn't been a specific app designed for autistic children.  Until now, that is.  I found an app that I hope is the first of many more similar apps to come:  iConverse.  

The premise behind iConverse is pretty simple:  You have six icons that provide basic every day actions:  Restroom, Sleep, Drink, Eat, Sick, and Help.  The communication is basic, but it helps those who are unable to communicate verbally, or those who have not yet learned to communicate verbally, to do so.  

When pressing on the icon, text covers the icon to indicate the selection, as does a verbal sentence that is played on the device.  You can select either a male or female voice as well.  

While it seems simple, it's much needed.  Currently it's available in the Apple App Store for $4.99.  I should note that there is software out there for special devices or the computer that will do the same thing, but has a high cost of over $1,000.  This is ideal, because it's relatively inexpensive for both the device and the software. 

I'm sort of disappointed, but only in the fact that I didn't develop it first (I've been working on learning Objective C just for something like this).  Well, perhaps I'll build a custom bracer for the iPod Touch for my son's arm, should we need one for him all the time.

Finally! An iPhone/iPod Touch App for Autistic Kids

The iPhone and iPod Touch have been truly amazing devices.  They allow a level of freedom for people that can't or don't want to use a stylus to still be able to use a mobile device.  They also make it more difficult to lose your stylus.  This means that it can be very useful for children with autism.  

The only problem:  there hasn't been a specific app designed for autistic children.  Until now, that is.  I found an app that I hope is the first of many more similar apps to come:  iConverse.  

The premise behind iConverse is pretty simple:  You have six icons that provide basic every day actions:  Restroom, Sleep, Drink, Eat, Sick, and Help.  The communication is basic, but it helps those who are unable to communicate verbally, or those who have not yet learned to communicate verbally, to do so.  

When pressing on the icon, text covers the icon to indicate the selection, as does a verbal sentence that is played on the device.  You can select either a male or female voice as well.  

While it seems simple, it's much needed.  Currently it's available in the Apple App Store for $4.99.  I should note that there is software out there for special devices or the computer that will do the same thing, but has a high cost of over $1,000.  This is ideal, because it's relatively inexpensive for both the device and the software. 

I'm sort of disappointed, but only in the fact that I didn't develop it first (I've been working on learning Objective C just for something like this).  Well, perhaps I'll build a custom bracer for the iPod Touch for my son's arm, should we need one for him all the time.

Time for Gardening: My Garden, and a Mention about the President's Garden

I know this is my second post for the day, but I have been waiting for the weather to get this warm for a while, and I wanted to post about my new garden.  

In front of my house (on the North side), I have had a huge section of my front lawn tilled under and covered with bark.  I did this to make the front yard more draught-resistant, but also because the land wasn't good for anything else.  The grass was even dying in that section.  

So, after tilling it under and placing down a fabric weed barrier, I covered it with several bags of bark and mulch.  The total space is probably 8 feet by 8 feet with the dead center of it planted in flowers and a small, young apple tree.  There is a lot of space there that has been, until yesterday, going to waste.  

This last fall I had made some extensive planting plans for my yard with the determination to have several vegetables and fruits grown for canning and storing this next fall.  I looked at this section of the yard, and decided it was time to use it.  

My intention was to plant root vegetables in this section, which requires a very light soil.  Not light as in helium, but light as in more sandy than clay.  Unfortunately, the vast majority of my yard is clay.  So, I placed down six 50 pound bags of play sand, and tilled it in with the dirt.  This made a wonderfully light soil, just perfect for root veggies.  

Initially I was only going to plant beets in this area.  Why beets?  Because I love beets!  My grandfather grew up on a sugar beet farm in Wyoming, and has instilled the love of a good sweet-pickled beet in my father, who gave that love to me.  So I planted Red Detroit beets, Golden beets, and an heirloom beet that my parents found.  

Of course, this only took up a small portion of the land I had prepared, far less than I had expected.  So I planted some heirloom lemon cucumbers, some watermelon radishes, and my father planted some heirloom white radishes.  Still, there is a good portion that is not being used, so I intend to plant some lettuce along those rows.  

In between the farrows and mounds I am going to put the bark back.  This will not only look pretty good, but it will also help retain water during the summer months.  

I'm really excited for this section of the yard, and I'm looking forward to planting the rest. I still need to plant my Broom Corn as a barrier (and can be ground into a nice gluten-free flour, like a cake flour), Bloody Butcher sweet corn (nice, dark red corn, and I liked the name), Strawberry Popcorn (looks like a giant strawberry), Cinderella pumpkins, baby sugar pumpkins, baby watermelon (I'm not sure if the seeds are any good, but I'm going to give it a try), dyer's woad (that's an experiment that comes out really well), pole beans (green, yellow, and purple if I can find it), carrots (red, orange, yellow, white, and purple again), and the tomatoes that we have started (Brandywine Pinks).  

If I can help it, all the plants will be heirloom, with a couple of exceptions.  I like heirloom plants, because you don't have to keep buying seeds every year.  You can plant from the seeds you retain from the last harvest, much like the old farm tradition.  So not only does it save you about $10.00 in seeds every year (at least for me), but you know what you will be growing.  And the seeds are good for up to 3 years before they start to lose their potency.  

Also, I would like to point out that President Obama is also starting a vegetable garden at the White House, with the intention of actually eating the produce.  This is great news, and something that every American should be doing.  Start a garden, whether it be a sizable plot or a couple of flower pots in your house.  You will find that vegetables just don't taste any better than when you grow them yourself.

Hyperbaric Chamber Treatments and Autism: A Real, Clinical Study

Not too long ago I read a story about a doctor that was giving alternative medicine treatments to autistic children by putting them in a hyperbaric chamber and increasing the pressure and oxygen into their bodies.  Parents and the doctor all claimed that the treatment worked, and significant improvement was seen in all areas of autistic behavior.  Naturally, I was skeptical.  I thought it was another one of those "Autism Cash Cows", meaning a method of milking money from desperate  families that have autistic children.  

But today my opinion has changed.  BMC Pediatrics is reporting this study, which was a registered, clinical, double-blind trial of hyperbaric chamber treatments over 4 weeks, 10 sessions (each an hour long, plus pressurization and depressurization time) a week.  They showed significant improvements for those with autistic children, with the highest improvements of those over the age of 5.  It blew me away, because it actually worked, and was proven to work. 

Now, the real problem is no one knows why it works, or what it does to help autistic children be more social.  That still needs to be determined.  Also, many doctors are still cautioning parents to wait for more studies to support these findings.  I would also agree.  Not only because of the potential dangers of placing your child in a high pressured environment (nausea, seizures, sinus problems, etc.), but also because of the cost of the treatments.  Each treatment runs on average between $140 to $150 a session.  Also, the overall lasting effects was not addressed by the report.  Do the children live now and forever with the knowledge that they need to be in a hyperbaric chamber for at least 2 hours a day?  That's a concern. 

And finally, the reason I would wait for now is the cost of a hyperbaric chamber for your home.  The going rate of a "portable" chamber is between $12,000 and $16,000, and it is not covered by insurance.  But, perhaps, if this treatment ends up becoming the norm, insurance companies will take the cost of a one-time purchase of a chamber over other potential costs.  Time will tell.

Pi Day Passed in the House: March 14th to be Recognized

One of the benefits of having a Representative in Congress on Twitter, is that you get some pretty up to date information quickly.  Today, in the House of Representatives, among other things, they had a vote on the designation of National Pi Day to be March 14th.  

While there are so many other important things out there that need attention by our Government, these little things are things that are bipartisan and should be celebrated.  

So, everyone out there in the world, Feel free to celebrate National Pi Day on March 14th, 2009!  How do you best celebrate pi day?  You could try having a contest on who can recite the most decimal points from Pi, or you could just simply eat a piece of pie.  It's your choice.  ^_^

Monosodium Glutamate and Autism Revisited

Those who have been following my discussions on my last post regarding monosodium glutamate and the claimed link between it and autism may know that I have had some pretty spirited comments regarding the subject.  Part of it came from my admitted lack of understanding of what MSG actually does in the body once it was ingested.  A few comments later, I was set right with several clinical studies on the compound, and it's relationship to the nervous system.  So, in light of the new evidence, I thought I would make a new post to outline what I have learned, and what still needs to be proven before I accept MSG as the "smoking gun" in all autism cases.  

I would also like to point out that I do not oppose the elimination of MSG as an additive in all it's forms from the food supply.  There are too many people that are adversely effected by this compound (most notably those that suffer with Fragile X Syndrome) to have it as such a general additive.  If you can't make your food taste good naturally, perhaps you shouldn't be selling it.

First, it is necessary to understand the glutamate compound.  Glutamate is one of four major components of DNA, as well as being one of the most (if not the most) important neurotransmitter protein in the brain.  Without glutamate in our body, we would die.  

That being said, most natural sources of glutamate are found in a bonded form with other proteins, which take longer to introduce into the system.  Common sources are protein foods like meat, eggs, dairy products, traditionally processed foods (like real cheese and tofu), and tomatoes.  The levels of glutamate in these foods are fairly low compared to the additives that are put in our processed and packaged food supply.  

The research that I have found shows damage to the brain at the hypothalamus (Olney, ournal of Neuropathology & Experimental Neurology. 31(3):464-488, July 1972). Another article points out that retina damage occurred in mice when exposed to high doses of MSG (Olney, Annu. Rev. Pharmacol.
Toxicol. 1990. 30:47-71). Neither mention other parts of the brain, those that are protected by the blood brain barrier.  

It should be noted that Dr. Olney has been key to the banning of monosodium glutamate in baby food back in the 1970's.  His work is groundbreaking, and invaluable in understanding the effects of MSG when ingested in significant quantities.

By contrast, patients in an MRI study with autism exhibited increase in gray matter in medial and dorsolateral frontal areas, in the lateral and medial parts of the temporal lobes, in the parietal lobes, cerebellum and claustrum. Patients also showed decrease in frontal, parietal, temporal and occipital white matter (Bonilha, Elsevier Brain and Development, the Official Journal of the Japanese Society of Child Neurology, Received 14 June 2007; received in revised form 25 November 2007; accepted 26 November 2007).  In Dr. Olney's study, only the hypothalamus and retina tissue was impacted in developing infants.  

Also, the abnormally developed amygdala and medial temporal lobe have been detected in patients with autism through MRI scans, suggesting a lack of developmental neuronal pruning (or incomplete pruning) as the cause of autism (Howard, NeuroReport:Volume 11(13)11 September 2000p 2931-2935). And the link between the amygdala and autism has also been established (Amaral, Novartis Foundation Symposium 251, “Autism: Neural Basis and Treatment Possibilities”, June 2002).

And so the link between increased brain size in multiple regions, reduced or non-existent neuronal pruning, and autism have been made.  Most neuropsychologists that I have known or read about subscribe to this link for most cases of irreversible autism as opposed to allergy autism, but more on that later.  

Now genetics step in with recent research on the PTEN and Serotonin Transmitter genes resulting in increased brain growth (Page, PNAS February 10, 2009 vol. 106 no. 6 1989-1994). Each of these genes increase brain size, while a combination of both compound the brain growth.  

Also recently announced was a link between brain growth, brain development, gastrointestinal repair, and the MET gene.  It seems that 118 of the 214 families studied had this same genetic link between autism and gastrointestinal disorders (Campbell, A genetic variant that disrupts METtranscription is associated with autism, PNAS 2006 103:16621-16622; published online before print October 30, 2006, doi:10.1073/pnas.0608027103).  While this could only be conceivably linked to a cause of autism in 30% of all cases, it is another genetic piece of the puzzle.

I found a reference to the Nerve Growth Factor (NGF) and inflamed sensory nerves, or nerves that receive a stimulation of some sort outside of the nervous system (vision, touch, etc.). They do see an increase in NGF within a location irritated by a stimulus in those sensory nerves. The hypothesis is that nerve growth in the brain would be related to an increase of NGF in the system which would be caused by MSG, though they only observed an increase in neuropeptide production when using another stimulus, and MSG was not mentioned in the article (Bradley et al, Int Arch Allergy Immunol 1999;118:150-153). The hypothesis has not been tested, as far as I have been able to determine. 

So, for summary, we have MRI evidence of increased brain growth across the brain itself, resulting in larger, more dense gray matter within the brain across the board, including those regions protected by the blood brain barrier where ingested or injected glutamate cannot reach once the blood-brain barrier is fully developed (Sahai, Glutamate in the mammalian CNS, European Archives of Psychiatry and Clinical Neuroscience, Volume 240, Number 2 / November, 1990).

Of course, the blood-brain barrier is not fully developed until an infant is 6 months of age (Rodier, Developing Brain as a Target of Toxicity, Environmental Health Perspectives, Vol. 103, Supplement 6 (Sep., 1995), pp. 73-76). But that would at least suggest that any exposure to glutamate after 6 months would have no effect on the growth of the brain, even if there were research to prove glutamate caused brain growth instead of brain damage as presented by Dr. Olney's findings.  Luckily, all food that infants eat up to and past age 6 months has had MSG removed thanks to the work of Dr. Olney.

References to the Chromosome 11 and neurexin1 changes and their relationship with autism have also been brought up in arguments in the dangers of MSG. It is interesting, but keep in mind that glutamate is the most prevalent neurotransmitter in the brain. So a gene that effects neurotransmissions can effect the levels of glutamate in the brain as it is being transmitted. This still doesn't link the ingestion of glutamate to increased brain growth. This actually is more likely to be linked with Fragile X Syndrome. 

Fragile X Syndrome has a unique property that does not allow a neuron to "turn off" their synaptic firings, which cause an overload, and as such causes autistic-like behavior. Glutamate is the transmitter, so if increased glutamate is released by the neuron is causes the neuron to overload, causing damage (not brain growth). So that would be another issue entirely (still worthy of note, however, and reason enough to pursue reduced usage of MSG in the food supply). 

Another argument made to link MSG to autism is the observed decrease of autism-like symptoms when patients remove gluten or cassein from their diet.  This actually refers to the ingestion of propionic acid, which then cause autism-like symptoms. This acid can be produced by a bacteria which ingests gluten and cassein that resides in the gut. The results of injecting this acid directly into the brain caused inflammatory processes, and as such caused autism-like behavior. It is also important to note that propionic acid is a simple fatty acid, and not a form of glutamate.

Now propionic acid in most vertebrates is carboxylated to D-methylmalonyl-CoA, which is isomerised to L-methylmalonyl-CoA. A vitamin B12-dependent enzyme catalyzes rearrangement of L-methylmalonyl-CoA to succinyl-CoA. The inability to process propionic acid could be a cause of what I like to call "allergy autism" or autistic behavior due to an allergic reaction. It would also require propionic acid to be able to cross the blood-brain barrier as a lipid soluble substance. That could be possible, as I don't have enough knowledge of the properties of propionic acid, so I cannot disprove the hypothesis.  But it results in a temporary state, and the patient recovers once the propionic acid is no longer in contact with the brain.

Also, with regards to the blood-brain barrier permeability: it is possible to have a damaged blood-brain barrier and make it more permeable. Common causes are infant rubella, heavy metal exposures, and exposure to alcohol for the developing brain (Rodier, Developing Brain as a Target of Toxicity, Environ Health Perspect 1 03(Suppl 6):73-76 (1995)). Though proper hydration can stem or reverse the increased permeability within the blood-brain barrier (McCall et al, Monosodium glutamate neurotoxicity, hyperosmolarity, and blood-brain barrier dysfunction, Neurobehav Toxicol. 1979 Winter;1(4):279-83). 

So the problem I have is finding that clinical link between glutamate exposure at an early age and the increased brain growth.  So again my request still stands: Is there any clinical evidence that supports neuron growth in the brain (and not sensory neuron growth) as a direct response to increased glutamate exposure? That is the missing piece of the puzzle that I need in order to support the theory of MSG as the cause of autism. As stated earlier, according to Olney’s research, MSG only seems to cause damage to the hypothalamus and retina tissue. No increase in neuron growth or decrease in neuronal pruning has been recorded as far as I can find in the stacks.

So my findings are thus:  MSG is bad, and for many people it can be disruptive to their lives.  It should be removed from the food supply in all it's forms.  This also means that food processing companies will need to actually work to make their food both tasty and safe.  Now there is a concept.  Thank goodness I'm working on my urban farming project to do just that:  make food that tastes better without additives.

But other than general health hazards, there is no concrete link between ingesting MSG and the development of autism.  The only time children could possibly be exposed to MSG past the blood-brain barrier would be before they are 6 months old when the barrier is not yet fully developed, and Dr. Olney has already seen to their protection since the 1970's.  It just seems to me that genetics remains the best answer, providing the most concrete clinical results.

As always, I welcome any clinical studies or rebuttals that are backed with clinical research!  I love to learn new things.

Gastrointestinal Problems and Autism: A Genetic Link for Some

USA Today posted this article regarding the link with brain development, gastrointestinal repair, autism, and the gene MET.  It seems that in 118 of 214 cases, the MET gene variation was identical for those with both autism and gastrointestinal problems.  This could account for nearly 30% of autistic patients who also suffer from gastrointestinal problems, and about 10% of non-autistic people.  

While this is great news, it is not by any means the smoking gun for the cause of autism, but it is a piece of the puzzle as it effects brain development and connections within the brain after development.  As many have posted in my comments in other posts, many autistic children suffer from gastrointestinal disorders, as well as seizures, and a number of other health problems.  

Some of these disorders can be associated with life in and of itself.  Just because you have cancer doesn't mean you can't die of a heart attack.  The same is true with autism.  Just because you are autistic doesn't mean you can't have allergies, poor vision, diabetes, or other disorders.  But this research specifically linked gastrointestinal disorders with brain development.  That's huge.  

What I really found interesting about this report is that USA Today was not touting it as the smoking gun, but rather said right off the bat that it does not account for all instances of autism.  This, to my mind at least, is ground-breaking journalism.  After reading article after article regarding "cures" for autism by treating another disorder like Fragile X Syndrome, it's nice to see the admission that a discovery is not the end all beat all in the quest to learn about the most diverse spectrum that is Autism.

Wanted: Graphic Artist Instructor for Drawing with Technology Class

Hello again!  Claire just passed on another contract instructor position they are looking for this summer: 

Graphic Art I-Drawing with Technology (Age 10-12 & 13-16)

Want to see the art of the future? Look no further than your computer. This interactive course teaches you how to use technology like scanners and software like PhotoShop and Illustrator to create your own art. Enhance hand drawn works or design entirely on the computer -- it's up to you. You will even learn how to modify photographs of your friends and family (picture your best friend with elf ears and bug eyes.) Graphic artists use computers to create company logos, CD covers and even framed images hanging in local art galleries -- what will you create? 

YETEC 050-001 • MTWThF, Jun 15-19 • 9:00 am-12:00 pm 
LOCATION: Annex 2169, Campus • SLC

NOTE: This section is for ages 10-12.

YETEC 050-002 • MTWThF, Jun 29-Jul 2 • 9:00 AM-12:00 PM
LOCATION: Annex 2169, Campus • SLC

NOTE: This section is for age 13-16.

 

Graphic Art II-Drawing with Technology (Age 10-16)

 You love drawing with a computer. You have taken Graphic Art or have used Photoshop and Illustrator at home. But, you are having too much fun to end it now! In this three-day extension course get further questions answered and hone your skills to realize what professional quality work you can do using Photoshop and Illustrator. Explore more advanced features including time-saving shortcuts, color-based selections and correction. Learn how to modify your own drawings, designs, and photographs. Expand your computer creativity to the max! 

 

 YETEC 051-001 • MTWTh, Jul20-Jul 23 • 1:00-4:00 PM
LOCATION: Annex 2169, Campus • SLC

NOTE: Prerequisite: Beginning Graphic Art - Drawing with Technology or previous experience with Photoshop and Illustrator.
NOTE: This section is for age 12-15

If you have any questions, feel free to contact Claire Turner at cturner at aoce dot utah dot edu.

Need for Dark Basic Trainer this Summer

Hello All!  Our Youth program here at the University of Utah is looking for a contract instructor to teach Dark Basic to youth ages 13 to 17.  Here is the description: 

Video Game Programming I with Dark Basic (Age 13-17)

If you've always wanted to create your own video games and never knew how, this class is for you, even if you've never programmed before! DarkBasic is an introductory-level computer programming language that focuses on basic concepts and 2D games. Learn the fundamentals of computer programming, such as bitmaps, sprites, input devices, sound effects, music, and movies. Course cost includes a DarkBasic book with a CD-ROM trial version of the language compiler.

YETEC 115-001 • MTWThF, Jul 27-31 • 1:00-4:00 PM
LOCATION: Annex 2169, Campus • SLC 

YETEC 115-002 • MTWThF, Aug 3-7 • 1:00-4:00 PM
LOCATION: Annex 2169, Campus • SLC



 

Video Game Programming II with Dark Basic (Age 13-17)

Expand your video game programming skills. This advanced class will focus more on game planning, code management, and 3D games. Learn the more challenging aspects of programming and use your imagination to create a variety of fantastic games.

YETEC 116-001 • MTWThF, Aug 10-14 • 1:00-4:00 PM
LOCATION: Annex 2169, Campus • SLC

If you have any questions, please contact Claire Turner at cturner at aoce dot utah dot edu.  She can let you know what they are looking for, which book they are using, and how much the contract instructor pay would be. 

Fluoxetine Trial Results: What It Means

Science Daily ran this story regarding the trial of fluoxetine for children with autism, as sponsored by Autism Speaks.  Fluoxetine is a drug meant to assist in treating the symptoms of autism for children.  It is not a cure, but a treatment that was given a serious clinical trial, and was found to be statistically no more effective than a placebo.  Naturally this came as a disappointment for the company developing the drug, and for many parents looking for some help in managing autistic behavior in their children.  

But the real story here isn't about the drug, but rather the trial itself.  The fact that there are serious clinical trials for Autism is a huge step toward understanding Autism itself.  Clinical research, regardless of it's outcome, is quite often the best method of learning more about a condition.  I'm proud that Autism Speaks organized this trial, and the community they represent is willing to look at the condition of au

Accepting Autism: Cure vs. Explore

This morning I browsed through my news feeds, and came upon this article by Maya M entitled Accepting Autism. The author was responding to an article written about parents who chose to take their child to Mongolia in search of a cure for his autism, as "Western Medicine" had failed them.  She then went into detail regarding her own personal pain she suffered when her son was diagnosed with Autism or something like it earlier on.  

I love articles like this one, because it speaks to all of us who have ever had the diagnosis mentioned or suggested to us.  We start by researching Autism through various websites and forums, learn all the fads and "cures" that are supposed to bring autistic children to their senses, and finally move into despair, frustration, and depression when we feel like there is nothing we can do to bring our children into the "normal" stream of society.  

And that was her argument:  we are trying to bring these special children into what is considered "normal".  We want everything to be normal about us, him, and so on.  Why?  What is normal?  How would you define normal?

She mentioned talking with a couple of people who were autistic as adults, and their desire for acceptance, and not a cure.  A cure suggests that there is something wrong with those with autism or autism-like symptoms.  There isn't, because it's part of their personality.  If you "cure" them, you are making them into something that they are not.  Imagine "curing" Tesla, Einstein, and others that have given our world so many great things.

My great comfort in this article is how to handle the diagnosis: 

1. Don't succumb to depression.  This is a tuffy for a lot of parents, as it was for me.  Depression doesn't do you or your child any good. 


2. Don't be obsessed with cures or treatments.  It doesn't matter if your friend's cousin swears drinking potato brain juice cured their child's autism, because many of the fads and "cures" are ineffective at best and fatal to the child at worst. 


3. Accept your child for who he/she is.  Autism has to do with genetic/biological hardware, and not some magic spell cast on your child.  Accept it, and work with it.


4. Be careful with mainstream treatments if they are aimed just at forcing normality down your child's throat.  Yes, occupational therapy, speech therapy, and the like are good, but if your child resists, don't force it.  Find something that your child doesn't resist.  Normality is an arbitrary assignment. 


5. Build your child's self-esteem. Do not try to dissuade him from his "precocious" or "unusual" special interests. Help him to develop them into possible means of occupation.  These skills can be useful, and if your child is really good at them, then people will accept them for who they are, for the skill.  It's unfortunate that is the case, but it is none the less true. 


6. If your child is still non-verbal at age 3 - 3.5, consider teaching him an alternative method of communication, such as spelling, sign language or picture-exchange communication (depending on the child's inclinatons). Never try to neglect his generic communication (pointing, screaming etc.) with the hope that this will "make him speak".


7. Be very understanding. Your child has tantrums because he cannot communicate his desires to you or because he is in a sensory overload.  Getting angry may happen eventually, but it doesn't do any good, or help the situation.


8. Care for the financial status of your family. Try to keep your job, if possible. Run away from every "expert" promising to rescue your child from the abyss of autism by separating you from your money. Even decent therapies sometimes aren't as good as toys and vacations that can be bought with the same money.


9. Contact other parents in your situation, autistic adults, other disabled people.  Get involved when you can, so that others can feel helped and supported.  

I loved this posting.  It's just what every parent with autism needs to hear, particularly at the outset of the diagnosis.  I would highly recommend it to any parent who found out their child

Deploying Final Cut Pro to a Lab: Multicast ASR

For the past couple of weeks I have been working on and off on a project to deploy Final Cut Pro in a fresh install for our Macintosh lab.  Previous to this the process was to image the machines and then install Final Cut Pro through a script.  Then on each machine I would need to enter in a site license for the software.  This took a lot of time, usually two days for a sizable class of 8 or so.  And, it didn't give me a huge margin of error either.  

At first I wanted to do something with NetBoot, because it makes it so easy.  Just set the NetInstall image as the default image on the server, and then deploy by booting the system off the NetInstall image.  it's really easy to set up, really easy for anyone to deploy.  Unfortunately, it doesn't handle large images very well.  And when I say large images, I mean large images over 38 GB.  I had often wondered why, until I took the Mac OS X Deployment class, and found out that NetBoot uses a unicast method of installing, which is very inefficient.  It actually surprised me that was the case.  

The only other option that was even remotely feasible would be to use a multicast ASR server.  Every Macintosh (either server or client install) supports the server aspect of this project, so it's very easy to deploy.  The only drawback:  It requires understanding of the command line.  Here is the process I took in order to get Final Cut Pro installed. 

Problems:  

1. Fresh Install of Mac OS X 10.5 with all necessary updates


2. Fresh installation of Final Cut Pro, Motion, Color, and Compressor (these are the Pro classes we offer here in Edtech).  


3. Practice files for the class.


4. License key already included. 


5. An administrator and a student account setup and ready to go.

I began the project by going through the Modular system image creation process.  In this process, you use a sparse image to install your OS and software, place your necessary files, and manipulate any configuration needed for the final deployment.  This is ideal for initial OS setups and system images.  So I installed the OS from a disk image of the install DVD with the following command: 

sudo installer -pkg /Volumes/Mac OS X Install DVD/System/Installation/Packages/OSInstall.pkg -target /Volumes/MacintoshHD/ -verbose

Now, I could have added a reference to an XML file that would have removed all unnecessary installations (like printer drivers), but the default install was good enough for the project and hand.  In this case, the MacintoshHD drive is actually an external FireWire drive.  I could also have done this on a machine in Target Disk Mode, but I thought this would  be sufficient, and it saved a lot of time, actually.  

Once completed, I installed the updates.  To find out what I needed, I actually booted up a machine with this default install and ran Software Update, which gave me the names of the packages.  I then downloaded the disk images, moved them to my machine, mounted the images, and installed with a command like this: 

sudo installer -pkg /Volumes/Mac OS X Update Combined/MacOSXUpdCombo10.5.6.pkg -target /Volumes/MacintoshHD/ -verbose

I kept the verbose switch on just so that I could see when it was done and judge when I needed the next update.  When I got to the Quicktime update, I ran into a problem:  You can't update Quicktime to 7.6 on an non-booted system disk.  That through a wrench into the whole "modular image" process.  Not to worry though, it didn't set back my image creation.  

Once I finished with all the updates that I needed, I then booted off of the FireWire drive and created my users in the directory.  I began with the admin account, which I used to install the remaining updates and Final Cut Pro and Motion Content from their respective disk images.  The installation let me enter in my site license for Final Cut Studio, and saved me a lot of time on each machine.  I than ran updates for The Pro Apps, which took only a couple more updates to finish.  Once done, I created my Student account with the standard login, and rebooted back into my regular computer. 

Note:  Do not try Final Cut Pro at this stage!  It will create the scratch disk with your UUID, which will make it unusable for any other machine after imaged! I found this out the hard way.

So now I have a system that is completely imaged, has the users created and ready to go, and has not launched Final Cut Pro quite yet.  Now I need to create my disk image that I'm going to use for my restore.  This is really easily done in Disk Utility, particularly if you have the image on a FireWire drive.  

Open Disk Utility, and then select the disk volume you created.  Do NOT select the physical drive!  That would result in a larger image than you need, taking up your entire drive.  Want to learn why?  Take the Mac OS X Deployment class.  ^_^  

Once the disk is selected, click on the New Image button at the top.  It will then let you name it (this is just the name of the new image, not the name of the disk), and ask you which type of image you would like.  I named the file ClonedImage.dmg.  The image needs to be Read Only, and Not Encrypted.  If you choose, you can make the image compressed, though it does take a little away from the performance.  I kept it as uncompressed for simplicity's sake.  Then settle in, this can take a while.  For a 38+ GB image, this can take almost up to an hour (time varies on the machine you use, RAM size, processor speed, etc.).

Once it's done, click on Disk Utility's Images menu, and then select Scan Image for Restore.  This can take some more time, though not as much as creating the disk image.  So settle in, have a good book to read or clean out your email.  

Once done, it's ready for deployment.  Some may suggest that you fix your permissions on the disk before you get to this point.  I've not needed to so far, but it is a good practice to adopt.  This would be a case of do as I say, not as I do.  ^_^ 

Now copy your new image to the "Server".  It can be Mac OS X Server, or a Mac OS X computer.  Either will support the ASR command.  I chose to use a Mac OS X Server that also had NetInstall images for the Macintosh 10.5 Leopard Install DVD.  You will know why in a minute.  I copied the file to the root directory ( / ) for convenience.

Once copied over, boot up the new machine and log in as an Administrator.  Open your Terminal, and create a config.plist file somewhere on the system.  The config.plist file should have at least the following parameters: 

defaults write /Volumes/Backup/Apple/Images/config "Data Rate" -int 6000000
defaults write /Volumes/Backup/Apple/Images/config "Multicast Address" 244.0.0.10 

I put it in the root directory as well for convenience, though you can place it anywhere you can remember it.  Then enter this command: 

sudo asr -server /config.plist -source /ClonedImage.dmg

Press enter, and you should get a notification that your ASR server is ready to begin multicasting.  Once done, you now just need to get to your computers you wish to restore and run the restore image there.  

In this case, I find it simpler to boot off of the Install DVD image.  By making a NetInstall image, it's easy to do and doesn't require multiple disks (and the disks don't walk away unexpectedly).  It also guarantees that your restore system is on the same subnet as your Server, and will have an assigned DHCP address.  Once booted off of the Install DVD, select your language and then click the continue error.  It will ask you if you want to run the install, instead click on the Tools menu, and then select Terminal. 

Now you should only have the Terminal window open.  Here, type the following command to start the restore, assuming your ASR Server has an IP address of 10.1.0.1: 

asr restore -source asr://10.1.0.1 -target /Volumes/Macintosh HD/ -erase

This command will search for an ASR server at that IP address, and then erase the target drive and restore from that image.  Then let it go!  For my image it took about 5 hours to complete, but just about all the machines completed the restore at almost the same time.  So I could have completed one install or 22 at the same time from the same server, and saw little difference in the time it takes to make the image.  

Now, this is the process I used.  It worked great, and our Compressor class (the guinea pig class for this image) ran just fine.  But what if you don't have the time, or the confidence to run the command line tools?  You can do roughly the same thing with NetRestore, which is currently no longer in development, or Deploy Studio.  Both of these tools can do the same thing I do here, but have a nice GUI interface and management is simpler.  

So you may ask why I chose to do it the hard way?  Because I love the command line, and I want to be sure I have the process down pat.  After all, unless you understand the process behind the scenes of a GUI tool, what do you do when the GUI tool doesn't work or has an error?  Where can you troubleshoot the problem?

PTEN and Serotonin Transporters and Autism

The neurologists at MIT have been hard at work trying to unlock the genetic predisposition for Autism.  In their trials, as reported in their article in the Proceedings of the National Academy of Sciences of the United States of America (PNAS), they found two genetic markers that can account for the social behavior and enlarged brains found in many children with autism (24 percent, in fact).  The results were interesting.  

Their research focused primarily on female mice, and mice in general.  It was discovered that the PTEN gene and Serotonin Transporters each have an effect on the brain, causing increased brain growth.  Together, they have an accumulative effect, increasing brain size even more.  There was also a correlation between social interaction and brain size identified, which reinforces the theory that increased brain size (and density) is related to autistic behavior.  

This is huge and comes at the right time when many parents who were led to believe their child was "given" autism by vaccinations, and that theory having been proven to be false based on several studies and the outing of fraudulent materials as the foundation for such a claim.

But, before we get too excited, there are a couple of caveats to this study:  It hasn't been conclusively proven that the same genes in humans have the same results.  It also doesn't explain instances of autism-like behavior that doesn't appear to be related to brain size at all (see my previous statements on allergy autism).  But it is a piece of the puzzle that has been discovered and matched.  That's the important thing.  I would hazard a prediction that all behavioral disorders will be linked eventually to genetic markers.  

So what do we take from all this?  Progress is being made on the conditions needed for autistic behavior.  Does this change the lives of those children with autism?  It could, if it were proven to be a genetic condition that would need medical attention.  It would then give medical insurance all the more reason to fund Autism treatment.  

But for now, we parents are still left to find the best way to help our children's brains work through and with their autism to become productive members of society.  That means working with psychologists that are helpful and willing, finding a support group that is dedicated to assisting the parent, instead of suing industries, and locating materials that provide real assistance.

The Lie that Started It All: Doctor Who Claimed MMR Caused Autism Falsified Reports

In 1998, Doctor Andrew Wakefield published a report in The Lancet medical journal claiming the MMR vaccine caused Autism in 8 out of 12 children within days of receiving the vaccine.  This set off a scare that caused a drop in vaccinations for measles, mumps, and rubella from 92% to 80%.  While this doesn't seem like much, a population requires 95% vaccination to receive "hurd immunity".  

Well, as the Times Online reported, the doctor falsified reports in the journal entry.  There was only one case where autism-like symptoms occurred within days of the shot, while the rest had concerns about their behavior before the vaccination was given.  

So why is this particularly disappointing?  Because it was a doctor that gave this information.  A doctor, who threatened thousands of children with childhood measles, mumps, and rubella, because he caused an unnecessary scare and untrue link to a genetic condition.  

But the damage doesn't stop at those children at risk because they were never vaccinated for these deadly diseases..  N0, he set Autism research and treatment back 20 years by convincing people that vaccinations were the cause of Autism.  So instead of research scientists checking on development of the brain during this period, they were distracted by angry parents duped by this one doctor.  

The pain isn't in those children at risk, but those children who with autism, whose development was stunted as people squabble over the actual cause.  Parents would then claim that if they skipped shots, ate only tea leaves, or stood on their heads to "get the toxins out" would improve, even though the children still had obsessive, repetitive behaviors quite typical of autistic children.  Their children were not being "cured", but rather their brains were performing the miracle it is so capable of doing:  It was learning and developing in spite of the increased neurons in their brains.  

I sincerely hope that Doctor Wakefield understands the full impact this little desire to get published has had on the world, and on the Autism community.  I hope, somewhere, he is reading this post and realizes the pain that he has caused parents of those precious children with the unique and diverse qualities resulting from having a more dense brain than "normal" children.  

Sir, shame on you.

Estate Planning for Special Needs: What to Do When Your Special Needs IdentiChild Is No Longer A Child

Last week I attended a very informative session with Matthew Wiese, a lawyer from Clyde Snow and Sessions.  He graciously provided a free seminar on behalf of the Autism Council of Utah for parents interested in learning what to do for their children when they are no longer children.  Sometimes it's hard to believe that your little child with autism may one day grow up, and you will not be there to protect them from others, and even from themselves.  

The first thing we talked about was the difference between no will, a will, and a trust.  With no will, the State will divide up your assets equally among your heirs.  Generally this is what you would want, right?  But what if you have a special needs child that would require more of an inheritance?  The State does not have the means to determine such a necessity, and as such the benefit will not be passed on to the child that needs it most.  

Next we have the will.  With a will, you can designate a larger sum to go to your special needs child.  Of course, this is seen as income for the child, which could therefore disqualify that child from any public Social Security benefits for which they would otherwise be eligible.  So while your intentions are in the right place, it is not necessarily going to benefit the child if that child is unable to manage the funds during the disqualifying period.  

Lastly, there is the Trust, specifically a Special or Supplemental Needs Trust.  This allows you to provide supplemental support for your special needs child without disqualifying them for any benefits for which they are eligible.  Some points to note regarding the Supplemental Needs Trust: 

• Identify and understand the public benefits for which your child is or may be eligible.


• The Trust must be irrevocable, so it cannot be changed after it is created.  Once you choose the assets, you lose control over them to the Trustee. 


• Although irrevocable, you can draft it with enough flexibility to allow amendments for changes in laws, state of residence, etc. 


• The child does not have the right to demand access to the assets of the Trust, meaning they can't decide to pull it all out and blow it in Vegas. 


• Payments from the Trust for food and shelter will be treated as income for Supplemental Security Income purposes, and reduce the SSI benefit. 


• Understand the implications of "in-kind" income, the "presumed value" rule and the "one-third reduction" rule for SSI beneficiaries. 


• Do not make distributions of income directly to your child.  When payments for food or shelter must be made by the Trust, the trustee should make the payments directly to the landlord, vendor, or other service provider. 


• Payments for non-food or non-shelter items have no impact on SSI benefits.  Therefore, to the extent possible, your child should use his or her SSI income for food and shelter expenses and the Trust should pay for non-food and non-shelter items. 


• Distributions from the Trust can be considered as income for income tax purposes, but not as income for SSI purposes.  


• Undistributed income is taxed at the compressed trust rate for complex trusts. 


• Life Insurance purposed by the Trust on the life of an important caregiver for the child may be appropriate for advisable.  


• Understand the SSI rules regarding housing expenses.  Payments by the Trust for rent, a mortgage, real estate taxes, gas, electricity, water and sewer, garbage removal, property insurance required by  a lender or condominium fees that include the above items will be considered as countable housing expenses by SSI and result in a reduction of the SSI benefit by one-third of the federal benefit rate, plus $20.00.  Payments by the Trust for  a telephone, cell phone, cable television, computer, Personal property insurance, paper products, repairs, capital improvements, staff salaries, laundry, and cleaning supplies are not countable housing expenses.  


• It may actually be in your child's best interest to forego public funding or receive a reduced level of benefits.  


• The trustee must keep appropriate records and adhere to traditional trust rules for investments, accountings, etc.  


• You get to choose the trustee who may be one or more individuals or a corporate fiduciary, or both. It's also important to choose alternate trustees, as the trust can often outlive any one trustee (or beneficiary).  

One huge benefit of a Trust is that it's possible to set it up so that family can contribute to the Trust.  So any birthday or holiday money can be placed in the Trust for the long-term benefit of the child.  

Of course, one thing that was brought up was the issue of Guardianship.  Many special needs schools will tell parents that they need to get guardianship of their special needs child by the time they are 18, or they become Wards of the State.  This is not true, and it's very scary to think that parents find this out the hard way.  

While it is true that it is easier to get Guardianship of a special needs child before they are 18, it's possible to go through the process at any time, as long as the special needs child is represented by legal council.  If one does not seek guardianship, the special needs child is not taken on as Wards of the State, but rather left to their own devices.  It is highly recommended that Guardianship is sought for your incapacitated child before they are 18, because once they turn 18 the HIPA laws go into effect, and you have no control over your child's welfare or medical needs.  

An alternative is Power of Attorney, where a child relinquishes the legal right to enter into contracts, and can extend to medical and other physical aspects of the care of the child.  It does not, however, extend to financial welfare, which would then be covered by a Trust.  

This was a very informative seminar, one that I was grateful to attend, particularly when permission to publish the handout material on my Blog was granted by Mr. Wiese.  If you have any questions regarding the creation of a Trust or gaining Guardianship, feel free to schedule a meeting with a qualified attorney.  Also keep in mind that while the amount of the Trust is not important, the cost of the process may be a bit steep.  So contact a lawyer to find out how much it might be, and start saving.  It is definitely worth it.