I know you're in there somewhere - Autism

[Gib_Papazian]

Gentlemen,

Warning: Nothing to do with golf.

I have noted that several of us have one or more autistic children. This has nothing to do with golf architecture, but given that this is the most erudite collection of people I can think of, it might be useful for us with challenged kids to compare notes and communicate off-line.

If you fall into this category, I would like the benefit of your experience and I will share mine. To protect everybody's privacy, I won't divulge who or where, but this is a growing problem and it is my understanding that at least one of us has a golf charity tournament to benefit this unexplainable epidemic.

-G

[ed_getka]

Gib,
   Best of luck to you in finding help for your son. I can only imagine how much it tears at your heart to want the fullest life possible for him. He is lucky to have a father willing to go to the lengths you are to find a way into his world.

[Kelly Blake Moran]

Gib,

Up until about 2 weeks ago I had no idea of the magnitude of this issue, or its impact on american children.  Odd as it sounds, I learned about it through listening to Imus in the Morning, which I do on the way to work, or traveling through the City, and he ahs really been on a daily crusade to get the word out.  Even today he has someone on that has written a book about the CDC and how they have probably started the biggest medical disastor in human history.  I am sure you know much more but what I gather is that childhood vaccines have been laced with a mercury based perservative, in some cases vaccines have 80 times higher the amount of mercury that is considered safe for an adult to ingest, and these vaccines have been given to infants.  It is still in the flu vaccines, and some claim no longer in child vaccines but Imus said that is not true.  Apparently this mercury poisoning of children may be the chief source of this Autism outbreak.  He recently had Bob and Suzanne Wright on the show talking about an organization they have started called Autism Speaks, he is the CEO of NBC/Universal, and he has had Rick Santorum on, the junior Senator from Pennsylvania, who apparently is getting onto this issue in an active way.  One guest pointed out that the political clout of the AIDS movement has sapped funding for research into other medical issues like Autism which is unfortunate since AIDS can be prevented by the actions of the individuals, but Autism which we do not know near enough about is not a result of any behavior by children.  In any event I hope that through Imus's exposure to the TV and radio media things will really get rolling on this issue, and for those of you that have infants and children you really need to do some research and asked some hard questions regarding all the vaccines we are now required to get our children.

I am not affected by this other than through friends, so my attitudes probably don't mean much and are not helpful to those of you who deal with this in your children, but the more I think about what has happened, potentially, with the mercury in the vaccines, which apparently is early 20th century technology, the more I get mad about it.  getting mad does not help, but really in this country, to let this happen, if it is true, is very discouraging, and I hope enough level headed people, unlike me, get involved and fight through the bureaucacy n the governemnt and do something about the potential that we have poisoned our children unknowingly.  this probably does not help you Gib, my anger, but hopefully this leads you onto other sources that might help.  But agian, for those of you with children or about to have chldren and must conform with the vaccines requirements you better get onto this issue fast and put pressure on people for answers.

[Brent Hutto]

I have no experience with autism but it's important to note that the "autism caused by mercury in vaccines" theory is not supported by any mainstream,  scientific research. It is a somewhat plausible stringing together of coincidental observations and that's all. Demonstrating a causal relationship between preservatives in vaccines and the (apparent) contemporary increase in diagnosed cases of autism requires more than just observing that those two things exist in the same time frame.

There may turn out to be something to it or it may turn out to be totally spurious. Either way, it will be a long time until the true etiology of autism is understood. And it will no doubt turn out to be complicated and multifactoral, as is the case with almost all human conditions.

[Kyle Harris]

To anyone with an autistic child of age (10 years old or more) the Boy Scouts of America is a good place to look for a program and support group for autistic children. Most councils have one or two troops dedicated to austistic children and it's a great way to meet other parents going through similar trials.

We get one or two units a summer at the camp I work at and the parents, leaders, and kids are all great. These people have demonstrated the patience and caring needed to provide a healthy lifestyle for their children.

[Adam_F_Collins]

We have an autistic child in our family, and we know more than one other family with an autistic child.

The lack of concrete understanding about this subject is very frustrating. There are so many questions...

[A_Clay_Man]

We met a couple here who have homed schooled their son, Liam. He is now about 9 or 10 yrs. old and has just entered "normal" school. He is excelling to the top of is class.
So, there is hope. I'm not saying it will be easy, but there are ways to overcome many of the stereotypical outcomes.

[Mike_Sweeney]

Kelly Moran made me aware of this thread. I have to run but hopefully Gib, Darva and  I will play our first round at Hotchkiss GC which is near a Autism learning center that Gib has gotten invovled with and is introducing our family too.

[THuckaby2]

GIb:

I know absolutely nothing about autism beyond what one generally reads.  But I am moved to post to say two things:

a) hang in there, and good on you for seeking support and giving yours.  There ought to be a special place in heaven for supportive loving parents of autistic children.  I know there is such a place for mine... not that I am autistic (inject humorous note, hopefully   ) nor are any of my siblings, but I do have a mentally retarded and otherwise handicapped brother (totally different thing from autism - absolutely understood), and what my parents have done for him in the way of love, support etc, through incredible hardship, well... let's just say I can offer experiential support in that area if you wish.

b) you have latched on to a great one in Mr. Sweeney there.  Hang on tight.  The term "good egg" was created with him in mind.  And that term might not mean much to folks here, but it is among the highest compliments I can give.

TH

[wsmorrison]

My youngest (12 years old) son is Autistic and is mainstreamed in the local school district.  I sent Gib a private email and wish him and his family well.   This can be a heartbreaking struggle for a lifetime yet with it can come daily rewards of varying degrees.  

John is doing very well these days.  A few of you have met him.  We went through some really tough times in the beginning and are thankful we've been dilligent in following Behavioral Analysis methods.  Medication is hit or miss.  There have been various ADHD meds and neruoleptics prescribed to John.  Its been difficult getting him off one med then trying another, especially during school.  We currently have him on a very low dose of a neuroleptic and, knock on wood, it has been going very well.

Each child is different and that is true for atypical children as well.  There is such a low level of understanding that its hard to find the right path for each child.  One thing is universal, early intervention is key!  

Awareness is another key.  I am a bit biased in this matter, but there is too much focus on other illnesses in relation to the degree of incidence and the impact of Autism.  Adults with AIDS and other diseases can lobby and form or ally themselves with powerful groups to effect allocations for  research.  It seems that parents of Autistic children must do the same to channel research dollars to this issue.  Yet, at the end of many days, it is hard to find the energy to do so.  A child with mild to severe Autism takes a lot out of everyone in the family.

Thankfully, John has a very mild case and he has a very high intelligence.  He may not score well on some tests due to the nature of the disorder, but he is functioning well and he is a scrappy Ben Hogan type.  He was voted by his classmates as student representative and just earned student of the month.  John shows us love and affection and is a constant joy.  His older brother is the perfect sibling and a wonderful help to us all.

Yet the reminders of how things were are still fresh and we always cringe a bit when the caller ID shows the school calling.  Last week it was to tell us how well he's doing and how great he is interacting with his fellow students; something he had great trouble with in the past.  They knew how difficult it was to get some calls, especially when experimenting with new meds, yet it was their pleasure to call us with terrific news as well.  We have a fantastic school district with ample funding.  This helps as well.  Lucky we can afford the additional interventions needed.

[THuckaby2]

Wayne:  you know that special place in heaven I just mentioned?  You're there, my friend.  Now just don't blow it in other ways.  

Sincere thanks for sharing that.  "Inspiring" isn't a good enough word.

And good on you for recognizing the sibling.  One of the most incredible things about my parents is that neither my other brother or sister or I hold any grudges, nor feel that we were anything but special, nor had our parents miss ANYTHING in our childhoods... all while my parents dealt with a very special-needs child also.  Incredible.

OK, I'll stay out of this now - I've sidetracked it too much already.  But this does just hit a little close to home.

TH

[Dan Kelly]

Gib (et al.) --

All I have to say, at this point, knowing very little of autism and having no personal experience, is:

1. All my best wishes, gentlemen. I'm sure we'll all be here to help you any way we can.

2. I hope this thread is never deleted. We need to know it's here, permanently, so that anyone who has something new to say can find the place to say it.

Dan

[wsmorrison]

Tom Huckaby,

That was very kind of you to say, thank you.
Best,
WSM

 

[Sean_A]

Gib

I have some experience of autism.  My niece is autistic and mentally impaired.  Unfortunately, she will never be in a position to support herself, which is the goal for many parents in this situation.  I have also been a special education teacher for Learning Disabled and Emotionally Impaired children in Michigan.  I reckon some of the children certainly displayed characteristics of autism, but nowhere near the degree of my niece.  If I can help in any way, please do not hesitate to ask.  I know my sister is a great advocate of children with autism and has been through a lifetime of pain and joy with her daughter.

Ciao

Sean

[Craig Van Egmond]

For more information on Autism you can check out this website.

http://autism.about.com/

[Tony_Chapman]

Gib - Thoughts and prayers from Nebraska for you and your family. I know little about autism, but I have a wife who is an occupational therapist and autism is one of the great things she loves to study. She has "nannied" a boy in the summer with autism to help her along. Maybe I can pick her brain for you a bit.

I hope we can find you a cure someday and get this horrible disease in the mainstream for additional research, etc.

[RJ_Daley]

As the others expressed themselves, to Gib, Wayne and those who have this disorder in their lives, I am grateful that you bring more information to those of us who know so very little about it.  

My wife as an elementary school teacher at grade 2 has seen a few students who had manifested symptoms that puzzled her.  Apparently, there are varying levels of how manifest the disorder can be.  Also, apparently, it can get more severe as time goes by (and I hope with treatments and therapy it can be mitigated to some extent ).  I really am speaking out of my hat here...

But, as a parochial school teacher, her school really did not have the resources or trained staff to properly educate and assist the children that had these disorders.  I remember one child that became more and more detached in behaviors from the class activity that perplexed my wife greatly.  She made it a special project to get that child properly diagnosed and channeled to an appropriate school that could offer the special ed services needed.  There was a great deal of resistance and denial by both the parents, and that private school administration, not to seek the more appropriate school setting.  Believe it or not, this caused rankor within the parochial school that caused employment friction for my wife because she knew the child's best opportunity was not in that school with their unspecialized and untrained staff to deal with that child, and it apparently represented a loss of tuition to see the child transferred.

The point being, there is just a lot of ignorance and unwillingness to commit resources (or deny resources) to those that need it, and deserve it as a matter of a right to an appropriate education.

Just to bring this mildly back to a golf discussion; in reading the Moe Norman biography, "A Feeling of Greatness", it implies that Moe may have been autistic in one of its many forms.  that possibly due to an early childhood head injury accident that may have caused brain damage.

[Gib_Papazian]

Thank you to everyone who has privately e-mailed as well as these responses. I have limited access to a computer until Friday (new Apple G-5, fried motherboard; no explanation) but want to pursue any and all other options/information etc.

Yes, I have found a place deep in the Bershire Mountains I believe has at least part of the answer and will write further when I am not rushing through my workday.

It astounds me how many of us have children with autism. I've looked at all the theories and am pursuing bio-medical interventions as well. My sense is that it goes beyond vaccines, although there is a loose connection of sorts.

Why this condition seems to be endemic to major metropolitan areas and with parents of higher-than-average I.Q's is - to me - is the mystery that may hold the answer.

Even if you factor out the lack of proper diagnosis is the hinterlands, it still does not explain the explosion of autism and its unchecked increase in places like the Bay Area.

Treatment of this horrible problem is like cures for the common cold. The old saw that the effectiveness of a treatment being inversely proportional to the amount of potential therapies/drugs has never been more true.

If your appendix is ready to burst, there is one cure. Now go look at the remedy shelves inthe drugstore for "cold rememdies."

ABA - Louvas, etc. seem to treat the condition by turning your child into a trained monkey. I just don't believe in it anymore. Nor do I believe that having your child swim with dolphins does anything but get him/her a chance to get wet and play with animals.  

Those who know me have an idea of the unique situation my son faces with regards to his mother. Thank God for the Redhead. The clinic I am buying into starts out by changing basic attitudes about autism and then working within parameters  your child can understand.

I liken the comparison between the Son-Rise program (Son-Rise/Option Institute) and Louvas like this:

Imagine that your child is deep at the end of a dark tunnel and can only see a sliver of light at the end. Louvas looks to wave your arms furiously at the opening of the tunnel and try to communicate from a distance using candy or other inducements. A foreign and confusing megaphone, barely audible from a distance.

My feeling is that the Son-Rise method walks parents and volunteers into the tunnel and slowly walks the child out. I do not know if they have the definitive answer, but I keep meeting parents at the institute whose children were far far more severe than my Nicky who are - to a greater of lesser extent - cured.
       
But I don't *really* know yet. That is why I am asking. There is a course I am taking with the Redhead in May - and then again in November. You essentially set up a program in your own home and train the volunteers (tough for only 2 parents to be effective without excluding everything else).

After a year or so, you bring your child for a week of intensive therapy. The claims seem impossible - especially to a suspicious curmudgeon like me - but they have sold me. No, wait, other parents have sold me. the whole thing is putridly "touchy feely," but if it works, that is all that is important.

Trouble is, I do not know if it works yet.

And of course, Nicky's mother studied directly under Louvas himself at UCLA . . . . . Things are not going well.

The key - I think is attitude.

[Gib_Papazian]

I also wonder if there is a correlation between the age of the mother and the incidence of autism. The guy sitting next to me at work for 16 years has this theory and it makes sense.

In major met areas, women tend to have children later in life. Also (moi' included) there are many more "infertility cases" because of the drop in conception rates as women get older.

Is there a correlation? It is almost like somebody with a computer/statistics degree needs to feed all of this into a HAL 9000 and see if a pattern emerges.  

[THuckaby2]

Gib:

Hang in there, my friend.  You've likely never heard this before but that special place in heaven exists for you as well.  Or maybe the Redhead takes yours.  

In any case this is a great place for support, as I'm sure you are seeing.

One thought occurred to me re the "whys" in this:  the media here makes a big deal about the huge overpreponderance of breast cancer in Marin county women... might there be some parallels... some useful common info in the studies?  Just a very wild, likely stupid thought.  There sure is a lot out there about that issue, anyway.

TH

[Gib_Papazian]

Gentlemen,

I've got one other question in regards to Moe Norman and autism.

Has anyone done any sort of experimentation in starting a large group of autistic kids on the game?

Obviously, there is an enormous gap from the least-to-most severe, but it strikes me that golf could be an excellent method to hone motor skills, often lacking in autistic kids.

Moe had his own swing, developed from hitting a million golf balls. Is the endless practice of the golf swing determination or perseveration? Hogan may have been as autistic as Moe. He was not terribly social either . . . . don't laugh. Think about it.

[RJ_Daley]

Has anyone done any sort of experimentation in starting a large group of autistic kids on the game?

Gib, that sounds like an interesting concept.  If groups of autistic children could be managed in a theraputic situation, it sounds like it would be a real win-win activity for passionate people like yourself.  I do wonder however, if the mere concept of group learning or therapy is contrary to the natural state of autism, being a very de-socialised symptom or process.  Can the children respond in groups?  I really don't know.  

But, thinking of Moe Norman; he did all of his repetitive practicing, isolated in his fanatical pursuit of working on his own unique method of hitting the ball.  Moe really did it his very own way, and was very bright in many things also having singular developed skills via repetition, including math.  

Yet, the book reports his consulting various amatuer and pro players of his era, and he discussed the swing nuances that he discovered or was working on in his own comparative study.  He was capable of engaging others to some degree.  But, any sustained display of social skills in situations where he had to relate to groups of people were disastrously awkward.

[ian]

Gib,

Regarding Moe: It has been suggested often that Moe was autistic, and there is much evidence that suggests this.

The only real question mark in this theory is the issue with a very severe accident Moe had as a child, there are some who think that Moe suffered some brain damage from that accident.

I met Moe a number of times, and to be honest, I still have no idea what to think about Moe. He was very opinionated and very painfully shy all at the same time. It has been suggested that Moe had an enormous inferiority complex, especially when it came to professional golfers.

I can tell you most of the stories you've heard are really true, especially the level of his control of his swing. His yardage estimation was also uncanny.

I can't tell you whether he was autistic, but I do think people underestimate how truly shy the man was. He may have been severely misunderstood just because he had so much trouble in social situations (and giving a demonstartion had nothing to do with socializing).

Sorry if this is too off topic from what you set out to do with this thread. I, like a few others, have family experience, but in my case my cousin can be very violent and is very difficult to communicate with. He has lived almost his entire 40 years with specialized care.

We have two close friends who have autistic children, I can provide you with the Canadian sources they have found if you like; but for now I will assume your overwhelmed with information. Just tell me to post or email the links and I will.


I wish you answers to your questions,

Ian Andrew

[Gib_Papazian]

Dick & Ian,

I think I might have inadvertently given the impression that Nicky's diagnosis is recent. We've know for 3 1/2 years of his condition, but it is only now that I am actively seeking alternative treatments/therapies.

It is the loss of faith in ABA that has spurned me onward.

The whole thing is a mystery. We are utlilizing an extreme biomedical/dietary therapy in conjunction with everything else. It seems to help, although it is impossible to quantify to what extent. Gluten, wheat, oat  and dairy free - in combination with a long list of herbs, spices, B-12 injections etc. - have improved his distended belly.

Golf still seems ideal because it is a group activity experienced in a singular way. Kids can get individual instruction on the range and then - by extention - learn to interact in short bursts on the golf course.

If you think about it, golf is an elongated series of short vignettes. We will try putting again tomorrow.

A friend of mine who was one of our transportation coordinators (in my *real life*) came in today for the first time with his daughter. She is 7 and Dad was lamenting that one of the reasons for his early retirement and move back (home) to the East Coast was to spend more time with her.

Both parents cannot understand why she struggles in school with lack of attention and odd behaviors - despite showing enough intelligence to do the work. I'm sure she has little appropriate interaction with her peers.

I sat with this little girl for 10 minutes . . . . . it was so very obvious, but I did not have the heart to tell them. Maybe I'll muster up the courage to suggest an evaluation - but these things can break your heart and it might be best to come from a physician instead of a friend.

He knows nothing about golf, so I feel safe posting this . . . . his (new) home is not far from the Son-Rise, Option Institute. Guess I better just spit it out.

As for my little boy, we will give it a rip and see what happens. There might be a Moe Norman in there somewhere.