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Topic : 01/17 Extreme Disorders

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Created on : Friday, January 13, 2006, 02:18:32 pm
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Does your child rage, scream and kick doors? Is his or her behavior the typical brattiness of a spoiled child, or involuntary behavior beyond the child's control? Dr. Phil sheds light on a pair of widely misunderstood extreme neurological disorders. First, he looks at Asperger's syndrome, a high-functioning form of autism which can cause a person to lack control over his or her emotions, including anger. Rich and Karen's 15-year-old son, Alex, was diagnosed with Asperger's at age 6. His sudden fits of rage and erratic behavior have put a strain on his whole family. Should his parents be afraid of Alex, or is there something they can do to bring his behavior under control? Plus, Craig, 37, can't control his physical tics, nor can he keep from constantly uttering obscenities, literally hundreds of times a day. Craig suffers from Tourette syndrome, an affliction that's gotten so bad, he won't go into grocery stores, movie theatres or any public place for fear he'll be kicked out. What will the disorder mean for his plans to start a family? Talk about the show here.

 

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January 22, 2006, 12:15 pm PST

01/17 Extreme Disorders

Quote From: mygirl41mk

I am very sorry-you are right ...I did just as you did and turned to finger pointing...I should not have done that as well as presumed you had a much easier time of things....I applaud you in your strength,your compassion for our children...all I am trying to express is the need for compassion for some parents who do not possess the same qualities that you possess...You must be very proud of yourself...i know I was before my break-down...I worked long years almost 9 yrs to get someone to finally realize what was really wrong...I have huge binders full of information I found on the internet to educate myself...I went to many professionals who they themselves didnt really know how to help...my heart sinks knowing that someone out there was able to do what I myself couldnt do for my own son...I have helped many other special needs children and God help me ,I couldnt even help my own son....but I will end this here...as I had to learn not to beat myself up so much about that so that I could further help my son in the present situation we are in now...and by the way...another reason ,altho it tears my heart out....it is best he is living with dad...is his sister's well-being and safety...he was very aggressive towards her since she was a baby-so some parents do need to safe-guard with some AS children...i am almost certain that if he had only had the AS he might have been gentler...and with all my work with him as well and now that his dad has finally stepped in (I cared for my son myself without my exe's help for about 5 yrs)....anyway...I think I am beating a dead horse...so I will start to focus on the more faithful,hopeful and more helpful messages....I am done with the finger-pointing...and again I apologize for stooping to that level!Best wishes and you have done an awesome job I know now...by your own means ,energies and will power... :)
Thank you for your note.

I think the main thing to remember here is that this show seemed to lack in many ways showing what it really needed to show about Asperger Syndrome. The family used as an example had no other children involved, and it was just them and the boy. He didn't seem all that different from my son or many other children of friends of mine. There was just something wrong with this program. I and several other families were very upset, and I am an emotional person prone to having to get it off my chest. It keeps me stronger when I do that, so forgive me if I hurt your feelings. It wasn't about you.

I hope you are taking care of yourself.
 
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January 22, 2006, 1:15 pm PST

Aspergers

I watched the show to see how Aspergers would be presented.  I was shocked.  The punch of music with regard to "rage"  "outbursts" sends the wrong message.  My son was diagnosed at age 14.  He is now 22 yrs old, in college and will be getting his associates degree in May.   

  

When my husband and I first heard the word "autism" I just about fell out.  I couldn't believe it.  For the next three years, we went into family therapy.  Thank God we had good insurance.  The doctors tried prozac, wellbutrin.....and our son refused to take medication.  Said he didn't need it.  We listened to our son.  He was right and has been med free almost 5 yrs.  We didn't  put him on any goofy diets, gluten free, or that crap.   He ate what we ate.  We didn't put him on massive doses of vitemins or minerals either.  We accepted him for who he is.    

  

His personality is made up of Spock, Data, Monk, Rainman and yes,.....Bill Gates and Albert Einstein.  No, he will not light up a room when he walks into it....."if" he walks into it.  He makes no bones about his desire to be "alone".  It is "his" happiness, just like our is to be the center of attention.   

  

We were worried when he sister said he was picked on in school.  He never told us.  When I asked him about it, he said, "They don't clothe me, feed me, put a roof over my head, nor do I live with them, why should I care what they think".   Hmmmmmmmm....sounds "logical" to me. 

  

It wasn't until the video game craze was in full swing, did the kids at school went out of their way to check my son out.  He is the modern day, "pinball wizard" of video games.   He took several HONORS classes in high school, but found poetry and literature a bore and struggled to pass them in the regular curriculum.   Because of the way he thinks, he cannot respond to "how do you feel" questions.  How he feels is not as important to him as it is to us.   

  

He was called all kinds of names in high school.  He enjoys college because he said the students that are in college, want to be there.  High school is social club.   

  

We were told he could get SSI supplements.  When we sat him down and explained what SSI was, he said, "Why should I get money, if I didn't earn it?"    Another "logical" response.   He got a part time job, and paid for his summer semester.  He drives, and makes his own car payment and pays for his own insurance. He knows AutoCad like the back of his hand.  We praise these accomplishments, all done without drugs, without SSI, without changing who our son truly is.   

When his job ended in October of last year, we noticed that he did "feel" something.  When pressed, he said he felt bad that his father and I had to pay for everything again.  I almost cried. 

  

Like the mom on show, I could relate to the lying around in bed all day.  That is part of it.  The isolation.  It is a comfort zone.  One thing I learned from my son, was..."don't make "feel" things....I don't"....  If he answers a "how was your day......??? with FINE.  Let it go.  He will not elaborate and fights ensue when pressed.  I have learned not to press.  It is difficult, but I give it my best try. 

  

I have asked my son, Do you know any pretty girls?   He responds, "mom, I have nothing to offer a girl right now.  I am in school, I need to get a job, besides, dad says girls are expensive, I have plenty of time, at least 60 yrs."    He has such a dry, sarcastic sense of humor and knows how to push my buttons....lol. 

  

I know someone who has a son, just diagnosed with AS.  She has him on one of those goofy diets.  I told her to stop wasting her time and love her son for who he is.  I told her she is going through, "I don't want other ppl to thing my kid is weird"...stage.  I told her that somewhere, Bill Gates' mother is smiling. 

 
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January 22, 2006, 1:51 pm PST

Kindred Soul

I too am the parent of an Aspergers teen.  My son is 16 years old and has multiple issues of which Aspergers is just one.  He has been diagnosed with obsessive compulsive disorder, seizure disorder, non verbal learning disabilities, ADHD (which I do not believe he has), and Aspergers.  He also has a significant stutter (which is increased I believe by some of the medications he has been taking).  He was identified at age 8-9 and we have been on a long journey trying to find the optimal mix of therapies, supports and medications to assist him in becoming an independent member of society.  It has been a tough road but one filled with much joy along with the pain.  He does not want for love and understanding which I believe are first and foremost in working with Aspies.  We have come a long way, taking three steps forward, two steps back and I can confidently say that we are in the best place we have ever been.   

  

What I am interested in sharing and getting feedback on are the specific medications and therapies that other folks are using with success.  We are quite open in our willingness to try new approaches and have been working to pull back on some components of the pharmaceutical cocktail that my son takes daily.  The more I take away, the better he seems to do, although I will readily acknowledge that this was not always the case.  Our pharmacological psychiatrist is supportive but hesitant and I am just looking to see what the experiences of other parents have been.  Besides his seizure medication, which is not open for debate, he takes Luvox and Seroquel in dosages that are relatively significant.  He had been on two additional meds but I put an end  to those over the last 9 months with very positive results. 

  

Is anyone having similar experiences in managing this condition?  Are any specific nonpharmacolgical treatments being used with success? 

 
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January 22, 2006, 5:17 pm PST

Thank you for your understanding

Quote From: godsey

Thank you to the family on todays show.  I have a nine year old son that has been diagnosed with several different disorders.  We did get a diagnosis of "possible Asperger's" at one point and started reading up.  Everything down to the trouble with fluency in speech fit my son.  I finally felt like we found something that was going to help put us on the right track.  Instead it has been hard to get doctors to agree.  One says OCD, one says Gen. Anxiety and another says personality.  It is so frustraiting to know your child when no one else does.  I worry about the teen years as we have a hard time living day to day now.  When your son spoke I felt like I was listening to my son in 6 years.  He sounded like him, my son often diferenciates between the feelings on the inside vs. outside.  When dad said that sometimes he can understand teasing and sometimes he can't-that was the first time someone acknowledged that these kids are not the same every day.  That made me want to cry and write to say thanks.  I hope that someday we can get in with the Brain Matters group and find a way to make my son's life better.  Thank you so much for your story.  I would love to find some other parents that deal with this kind of stuff to vent to and listen to.  There is no support group for this disorder near me.   Thanks Dr. Phil for this show.  I learned more listening to that boy than I have in all the books I have read. 

kc 

As Alex's mother I am frustrated that people who watch Dr. Phil don't understand that he needs to take a focus and trying to cover all of AS would be impossible.  it is true many AS individuals never have meltdowns, and they function well, like a Bill Gates, despite being GEEKY, he is brilliant , rich, married and a parent, however many more have other disorders with the AS.  Brain Matters has been able to open our eyes beyond the AS and we hope that those who understand like yourself will continue to work at getting more answers for yourself. 

  

I am here to help support you the best I can, because as you know we are living this.............kikione1@cox.net 

 
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January 22, 2006, 5:23 pm PST

From Alex's mother

Quote From: annabn

I watched the show to see how Aspergers would be presented.  I was shocked.  The punch of music with regard to "rage"  "outbursts" sends the wrong message.  My son was diagnosed at age 14.  He is now 22 yrs old, in college and will be getting his associates degree in May.   

  

When my husband and I first heard the word "autism" I just about fell out.  I couldn't believe it.  For the next three years, we went into family therapy.  Thank God we had good insurance.  The doctors tried prozac, wellbutrin.....and our son refused to take medication.  Said he didn't need it.  We listened to our son.  He was right and has been med free almost 5 yrs.  We didn't  put him on any goofy diets, gluten free, or that crap.   He ate what we ate.  We didn't put him on massive doses of vitemins or minerals either.  We accepted him for who he is.    

  

His personality is made up of Spock, Data, Monk, Rainman and yes,.....Bill Gates and Albert Einstein.  No, he will not light up a room when he walks into it....."if" he walks into it.  He makes no bones about his desire to be "alone".  It is "his" happiness, just like our is to be the center of attention.   

  

We were worried when he sister said he was picked on in school.  He never told us.  When I asked him about it, he said, "They don't clothe me, feed me, put a roof over my head, nor do I live with them, why should I care what they think".   Hmmmmmmmm....sounds "logical" to me. 

  

It wasn't until the video game craze was in full swing, did the kids at school went out of their way to check my son out.  He is the modern day, "pinball wizard" of video games.   He took several HONORS classes in high school, but found poetry and literature a bore and struggled to pass them in the regular curriculum.   Because of the way he thinks, he cannot respond to "how do you feel" questions.  How he feels is not as important to him as it is to us.   

  

He was called all kinds of names in high school.  He enjoys college because he said the students that are in college, want to be there.  High school is social club.   

  

We were told he could get SSI supplements.  When we sat him down and explained what SSI was, he said, "Why should I get money, if I didn't earn it?"    Another "logical" response.   He got a part time job, and paid for his summer semester.  He drives, and makes his own car payment and pays for his own insurance. He knows AutoCad like the back of his hand.  We praise these accomplishments, all done without drugs, without SSI, without changing who our son truly is.   

When his job ended in October of last year, we noticed that he did "feel" something.  When pressed, he said he felt bad that his father and I had to pay for everything again.  I almost cried. 

  

Like the mom on show, I could relate to the lying around in bed all day.  That is part of it.  The isolation.  It is a comfort zone.  One thing I learned from my son, was..."don't make "feel" things....I don't"....  If he answers a "how was your day......??? with FINE.  Let it go.  He will not elaborate and fights ensue when pressed.  I have learned not to press.  It is difficult, but I give it my best try. 

  

I have asked my son, Do you know any pretty girls?   He responds, "mom, I have nothing to offer a girl right now.  I am in school, I need to get a job, besides, dad says girls are expensive, I have plenty of time, at least 60 yrs."    He has such a dry, sarcastic sense of humor and knows how to push my buttons....lol. 

  

I know someone who has a son, just diagnosed with AS.  She has him on one of those goofy diets.  I told her to stop wasting her time and love her son for who he is.  I told her she is going through, "I don't want other ppl to thing my kid is weird"...stage.  I told her that somewhere, Bill Gates' mother is smiling. 

We all have to look for the answers for our children and ourselves that work for us.  Alex does not have meltdowns daily but weekly, and some are worse then others.  It is not only the AS but the Mood Swings and OCD and Compulsive Behavior and most often these are all part of the AS syndrome.  I am glad that you son is doing so well and when Alex is in control he is wonderful, smart, and fun to be with as long as he is talking non stop sports or performing.  As long as Alex is in his MODE he is happy and well functioning, change the environment and words and other things may begin flying. 

  

I love Alex and I want him to have the best life he can have.  He is the one who has told us he is not normal and he wants to be more normal, so I reached out and Dr. Phil and his crew caught us in mid fall and we are finding answers and seeking even more. 

  

  

 
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January 22, 2006, 5:26 pm PST

If you are looking for more answers

Quote From: mygirl41mk

The best way is possibly through his school asking which agency would be involved in having a psychologist to do testing...when I went thru it -and I am from Canada (Ontario) it almost took a year tho...6maybe there is a quicker way...run with your gut and dont let anyone tell you otherwise but please do me a favor....please make sure you make time for yourself-I know it is hard...I tried turning in so many directions only to do it alone...I had friends and family who thought they were helping but only came around during mild times which they thought were tough....after denying for years tho that it was this or that or not that bad....and never really saw the worst of it....partly because I shielded my son and them from it so not to turn attention to him and so people wouldnt label him as a bad kid...he is an awesome boy...I fought for almost 9 yrs with no one really taking me serious....my ex left me probably because all my focus was on trying to find someone to listen...so please if there is anyway possible you can take a few hours here or there even if you have to tell family you have an appoinment or something and even if you think no one else can deal with it....go take time for yourself,without guilt not just for a break but to be able to regain enough energy and strength to deal with the next outburst or meltdowns or whatever you want to call them...take care of you first...I didnt and I burned out ...I hope that someday I will find that fight I had in me back then./....I am sure you will do fine...ask for help....but take a break as much as you can to help your son and to survive....

Please remember to check out brainmattersinc.com  and have your medical team and school system check them out as well.  Although a lot of help is hidden if need be go to your local media and beg if needed for help. 

  

We can't be too proud when it comes to our children. 

  

Alex's MOM 

 
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January 22, 2006, 5:30 pm PST

You are right however

Quote From: joyceymay

I agree with this poster 100%.  I hope Dr. Phil's staff is paying attention.

What this show did was open up a forum and let me tell you how many AS parents have children just like my Alex.  However Alex is not like this 24/7 but waiting for the next meltdown is what creates the additional anxiety.  What Brain Matters identified was a Mood Disorder with a seizure component.  Without this brain scan series we may never have gotten the diagnosis we need to truly treat Alex properly. 

  

AS is not a stand alone syndrome and because of that we need to make people aware of the many aspects it has, so maybe we can have another show that will show the milder side.  My niece has twins both with Asperger's one is much like Alex, the other is mild mannered. 

  

In a 60 minute show there is only so much one can show and we appreciate that Dr. Phil at least got the word out and is willing to help..... 

 
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January 22, 2006, 5:36 pm PST

I am sorry you think we are broken

Quote From: sudsywudsy

 Dear Dr. Phil,

I was offended by the name of this show.  AS in many peoples opinion is not an "extreme disorder".  This is a catchy title maybe thought up to draw in a large audience.  But, when speaking of people on the autism spectrum, I find this title very insulting.  These people need to be addressed in a respectful way. 

Asperger's Syndrome is an autism spectrum disorder.  Just as snowflakes are not alike, no two children with AS are alike.  A show about AS should have addressed the diagnostic criteria and different positive interventions, modifications, etc to help these children  feel good about themselves.  These children suffer due to being misunderstood.  You could have shed some light on this issue instead of trying to "scan brains".  These people are not broken in need of fixing.  They are in need of respect, patience and kind understanding.  You would not  force a wheel chair bound person to walk, so why would you try and force a AS person to be "normal".

Alex was so defeated.  His parents have drummed into his head that he is broken.  How upsetting and sad.  What will become of Alex with parents that fail to understand AS and be kind and patient with Alex.  They screamed at him and used abusive language.  The spotlight should of been on them, and how they need help .  Not on Alex.

I hope, Dr. Phil, that you will do more investigative work into AS.  Again,  AS persons are not broken in need of fixing.  They  could use positive support to help them learn how to navigate through  this cruel hard world.

Here is a link to my forum "Asperger's Family Forum" which is on Delphi Forums.  A quick registration is required.  This is a  voluntarily run support and information forum that has been up and running for almost 4 years. 

http://forums.delphiforums.com/asfamily/start

Sincerely,
Merrill


We have not drummed into Alex he is broken, Alex drums into us he is broken and he wants to be Normal.  Alex is defeated because when in control he realizes he wants to be like his classmates but he knows he is compulsive, obsessive and has a need to be right and have it his way.  AND yet when in control he is loving, and enjoyed by all but at the blink of an eye he will rage and say he wants to die.  He feels incomplete, so what should a parent do....What we have done is run in circles looking for answers with no support of family or close friends.  When people have seen Alex in his downward spiral they have pulled away. 

  

Since Dr. Phil our family and many lost friends have opened their hearts to us and they now understand what our life is all about. 

  

There is a lot of wonderful moments in our life with Alex we only want them to be more for him! 

 
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January 22, 2006, 5:42 pm PST

From Alex's Mom

Quote From: nifnax

 I was wondering what your suggestion might be for approaching a child about their diagnosis? How old was Alex when he first heard that he had Asperger's? Did you sit him down, was his Dr. involved...

Our 11 year old son has always been taught that his differences are something to be proud of, that everybody learns differently and that is why he is at a different school than his brother, etc.  He has a lot of self-esteem up to this point.

It's just that lately he has been questioning more about why he is 'different' than other kids and why are they are mean to him - telling him that he's not cool, he's weird, and so on. It just seems that we have been waiting for the perfect moment to tell him about Asperger's but the older he gets, the more I am realizing that there is no perfect moment!

What do you suggest? It would be nice to hear from Alex's perspective too, if possible.

Thank you,
A proud Mom


Alex was informed of his AS when he was diagnosed.  We have always tried to stress the positive, however with his Mood Disorder he doesn't always believe it or grasp it.  However his AS brings us a very intelligent young man with a musical talent and a warm huge heart.  We do teach him his differences make him SPECIAL and that all people are different.  Alex has extreme self esteem when it comes to his knowledge on Sports, specifically baseball and his musical talents. 

  

There are times Alex doesn't care that he is different, and talks to himself while playing video games or play acting out a baseball game.  And yet there are many more times when he hates the fact that he meltdown when things are to intense for him.  When calm he can tell you how he should react but the AS and it's many components too often get in the way. 

  

Alex and I have done a number of interviews since the Dr. Phil Airing and we hope to find someone who will help us write a book, Alex wants to get help and help others.   

  

Despite what you saw on the show, we love Alex, and he says he loves us. 

  

Another proud mom! 

 
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January 22, 2006, 5:42 pm PST

From Alex's Mom

Quote From: nifnax

 I was wondering what your suggestion might be for approaching a child about their diagnosis? How old was Alex when he first heard that he had Asperger's? Did you sit him down, was his Dr. involved...

Our 11 year old son has always been taught that his differences are something to be proud of, that everybody learns differently and that is why he is at a different school than his brother, etc.  He has a lot of self-esteem up to this point.

It's just that lately he has been questioning more about why he is 'different' than other kids and why are they are mean to him - telling him that he's not cool, he's weird, and so on. It just seems that we have been waiting for the perfect moment to tell him about Asperger's but the older he gets, the more I am realizing that there is no perfect moment!

What do you suggest? It would be nice to hear from Alex's perspective too, if possible.

Thank you,
A proud Mom


Alex was informed of his AS when he was diagnosed.  We have always tried to stress the positive, however with his Mood Disorder he doesn't always believe it or grasp it.  However his AS brings us a very intelligent young man with a musical talent and a warm huge heart.  We do teach him his differences make him SPECIAL and that all people are different.  Alex has extreme self esteem when it comes to his knowledge on Sports, specifically baseball and his musical talents. 

  

There are times Alex doesn't care that he is different, and talks to himself while playing video games or play acting out a baseball game.  And yet there are many more times when he hates the fact that he meltdown when things are to intense for him.  When calm he can tell you how he should react but the AS and it's many components too often get in the way. 

  

Alex and I have done a number of interviews since the Dr. Phil Airing and we hope to find someone who will help us write a book, Alex wants to get help and help others.   

  

Despite what you saw on the show, we love Alex, and he says he loves us. 

  

Another proud mom! 

 
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