Topic : 01/17 Extreme Disorders

I don't fully understand why Dr. Phil couldn't highlight some of the most common characteristics of AS. I have two boys - ages 6 and 4 - with AS and PPD-NOS respectfully. In the 2.5 years of living with these conditions, I have yet to see a news or talk program focus on "regular" AS kids. I mean, we know that not all AS kids have high IQs nor or they all harmful to themselves or others. I am a working mom who has my kids in behavioral therapy once a week and additional therapies (speech and OT) when we need to get over a developmental bump. All I want to know is what can I expect 5-10 years from now and what do I need to prepare for. Suggestion to Dr. Phil's team - show positive stories next time. Parents who are hopeful for positive outcomes need to be supported too.

hi, 

  

As many have expressed, I too was disappointed, i guess I didn't know what to expect.  I am hoping that their will be more answers on the next show after they do the brain scan and I guess therapy.  My son 17, has also been the way Alex is and it is scary to see.  My son is over 6 foot and 245 lbs and I see the so gentle side and then the out of control side.  He's on meds but I think with time and maturity he is getting a bit more calmer (or understanding his outbursts).  I do hope Dr. Phil will also discuss what a couple can do to keep their marriage together when our lives always surround the child.  It's hard.  I give you alot of credit and especially to Alex for going on the show because I know my own son would have never been able to go on the show.  Then again I probaly wouldn't either this I'm also on the spectrum.  I would love to get that brain scan myself.   Do you know if they have it in the NYC area?  A 

My 10 year old daughter was diagnosed with Asperger's at the age of 6, after 3 years of testing and doctor's.  You know people always think they have it rough until you here about some else.  Thankfully, my daughter does not have the rage that was talked about in today's story, even though her father was full of rage but not violent.  Mostly, our problems are social and comprehension.  

  

Three years ago, we went through a one year period of losing, my mother-in-law, my daughter's cat and hamster, my mother and my daughter's father.  I had no idea how to tell her about her father.  How would she understand, but she did and has done well.  Maybe because we were divorced.  But since then she has become very attached to me.  She thinks that her Dad died because she was not with him, so therefore she does not want to be without me at all.  We have worked on it and it is getting better but I got help from a child psychologist also.  

  

In Kayla's (my daughter) mind there are only 2 people in the world and that is her and I.  Socially it is very hard.  She does not have sleepovers.  Anytime a kid at school says something 'negative', she takes it very hard.  Middle school next year is something I really have a hard time thinking about.  Another 'problem' with her is that you cannot joke around with her or even call her a name like goofy or silly.  she comes unglued and really hates it.  I tell her these are good names or even when you joke with her, I tell her it's good, but she takes everything so seriously and that is hard for my family or anybody or friends outside of the family.  She is very, very, literal!!  

The really sad part is people who don't know her think she is spoiled or really troubled.  Some say "oh that's just the 10 year old".  If they only spent 24 hours with her they might see.   

  

I once read in a book that children with autism live in their own world and children with asperger's live in our world but they do it their own way.  Boy, is that true with Kayla.   

  

Kayla act's self-centered but she does think of other's.  She just does not know how to express things properly.  I don't have any parents to talk to who have children like her, so I am glad to find this topic here.  I have read the adults who have AS and it is comforting to know that they can lead normal lives as adults.  My goal has been all of her life to help her to be the best that she is capable of being!  And I will continue this as long as I need to. She is the joy of my life! 

  

If there are any parent's in Oklahoma with special kids like my daughter, let me know.  It's nice to know your're not the only one out there. I would love to see more topics like this on Dr. Phil.  Any information from anybody is well liked and helpfull. 

Check out the Parent Training and Information Center website at www.partnerstx.org for Texas.  Partners Resource Network has free information and resources for families of students with disabilities. We are a not for profit organization and have regional coordinators that cover the various Education Service Center regions in Texas.  There are 3 projects with offices that have toll free telephone numbers. 

  

Each state in the United States should have a Parent Training and Information Center and/or Community Parent Resource Center.  These centers can assist with IDEA (Individuals with Disabilities Education Act), disability information, local resources, preparing for school meetings, reviewing IEP's (Individual Education Plans), just to name a few. 

  

I am a parent of a 16 year old son who has had too many diagnosis to list. We suspect Aspergers or Pervasive Developmental Disorder. I am a Regional Coordinator for Partners Resource Network and previously worked in the classroom as a Special Education Teacher. 

  

I have been through many ups and downs and continue to persevere because my goal for my son is that he become a productive adult with his gifts shining.  Talking to others with similar experiences helps each one of us to know that we aren't alone and that our paths may be rocky, but there are others who understand and are compassionate. 

I am a music therapist and special educator.  I have had a lot of experience with children with autism and aspergers.  I have found that a lot of the issues with emotion are related to a difficulty in understanding emotions and therefore getting upset because of this.  There are also a lot of sensory integration issues.  I would recommend the book "Song of the Gorilla Nation: My Journey Through Autism" by Dawn Prince-Hughes.  I have seen her present and she is amazing.  She has Aspergers and was able to get her PhD and is a huge animals advocate for gorillas.  She described how she began to understand people and herself through her experience with gorillas.  For Tourettes I would recommend the Oliver Sacks' book "An Anthropologist on Mars: Seven Paradoxical Tales" which has an amazing story about a man with Tourettes who is a surgeon and pilot.  Of course, as a music therapist, I would also recommend music therapy which can help people express emotions in new ways and can offer self-soothing techniques which can help with tics.  Try www.musictherapy.org for more info.  Good luck! 

Jennifer 

My son was diagnosed 3 1/2 years ago.  In fact both my sons have this disorder.  My younger boy is just like the boy in the show.  In fact Alex and my son could be one in the same, but Morgan is only 12 and has already tried to commit suicide 3 times and has physically assaulted me, been hospitalized in a psychiatric ward and we have had the cops at our house 4-5 times because of him and his behaviours. 

  

Like Alex's mother I am at the end of my rope.   

  

  

I and my wife have lived with an AS child for 14 years. So I can speak from experience and say first of all that i am slightly confused by what I saw on the screen. I watched your segment twice now the second time with my wife. Screaming at a child with AS does nothing but escalate that anger,second we noticed that some of his actions and interactions with Dr Phil did not seem to match with AS, such as good eye contact and expressing his feelings. With our son we cannot drag an emotional response out of him. When asked a question relating to emotions he cannot come up with the words to respond. It sounds like your son has social interactions at school our son has no friends and very limited social interactions and does not want to seek out those social interactions even when encouraged to do so. 

  

I hope the brain scan he has will help definitley diagnose him because I suspect that if he has AS it is not trully the major problem in his life. I am also dissappointed that Dr Phil did not discuss any of the treatment or support you and your family has received because that would have been more helpful than scaring people about AS by showing the clips that were shown. I blame Dr Phil for that one. However, I was shocked by the screaming matches that took place between you , your husband and your son. I can honestly say that we have never had such screaming matches in our house. Which is not to say that our son has not had extreme out bursts, He has , in cluding inflicting wounds on his brother that required medical treatment and varying from screaming at the top of his lungs to not saying a word for hours because he did not want to respond to us. 

  

With the help of an outstanding child psychologist and therapist (whom he trusts) and an appropriate pharmacological solution properly administered and understood by our son he has come to a point in his life where the outbursts now limited in frequency and duration and severity. It does not sound to me that you have found that kind of help and support as yet and it is my sincere hope that you find through the help of Dr Phil. 

  

Sincerely  

Craig S. Wolfe 

wolfeden927@comcast.net 

My son was @ 5 yrs. old when I started noticing his tics.  I did as much researching as I could the problem was there just was not much ( 6yrs. ago) out there.  As time went by I did take him to a neurologist in Dallas TX who felt tha he did have TS.  The doc gave us Clonodine ( a blood pressure med.) that helped a little.  While taking this he was always tired no smiles , no silly comments so he (my son ) and I chose to take him off the med.  He is a class clown,  has the best batting average in the whole county in which we live.  Grades are A/B and I want complain about that.  However , he jerks: arms , neck, head,legs, feet and a few vocal.  No stress good or bad can be placed on him if at all possible.    To this day nothing I have tried has helped other than the horrible meds,  except one thing -- taking away ALL video games.  Play Station wil trigger his jerking quicker than anything.  Computers ( especially games ) will also ,one problem, it is mandatory that he take computer in Texas school systems and every where else probably.   I hope that maybe the video game may be someone elses relief ( it has helped but not to a calm).

I grew up with ADHD. While that isn't as pronounced as Aspbergers Syndrome I nevertheless had to deal with a lot of what you have. The feeling of being the only person with this thing, impulse control and socialization. The lonlieness is worst. Since conditions like that are relatively rare or in my case it was so early in the field of ADHD that nobody else I knew had been diagnosed although several probably had it. You just feel all alone and as if you are fighting the world.  

  

What I can suggest is find some people dealing with the same issues you are or similar issues. Also there are people who don't care about your problems. Those people like you for just what you are. Cherish those people and ignore the idiots who talk and make fun of you. You are a special person. Just don't forget that. 

I'm sure I speak for others when I say that Alex is not at representative of the vast majority of young people diagnosed with AS.  What a wonderful opportunity Dr. Phil had to de-mystify and explain some of the traits associated with AS.  Instead, I'm afraid that these already isolated young people have been portrayed as someone to be feared. 

  

My 23 year-old nephew has AS.  His story is too long to recount here, but someday look for the best-seller, because his mom and I are going to sit down and write Billy's story.  We have read every expert (surf Tony Attwood, read Dr. Temple Grandin's story, surf Wired Magazine's article entited "Geek Syndrome"), there you'll get a better feel of what Asperger's is all about. 

  

These kids are highly intelligent and simply lack the social skills to "fit in".  They can't read normal social cues, the are often the target of bullies, they have strange "preoccupations" with everythng from light switches to maps to money to computers, they can learn to "memorize" socially appropriate behavior.  Asperger kids often have highly educated parents, often engineers, talented musicians and a family lineage where you can find someone who you can characterize as "odd".  Albert Einstein, Ben Franklin and others are listed as possible famous people with this disorder. 

  

No question, the teen years are the worst.  My nephew was thrown out of every elementary school he attended.  He was disruptive and the class clown.  He longed simply to fit in and just couldn't figure out "how".  High school was even worse.  He struggled to make friends and instead was targetting as the perfect patsy because he was so smart.  Kids would force him to do their homework.  It was a long frustrating journey.  AS wasn't even on the books until 1994, when Billy already 11 years old and had been to every "special school" in his area.  In May of 2001 we took Billy to an Asperger's Conference in Dallas, Texas (we live in Canada).  There we all had an opportunity to list to Key Note speakers, including Dr. Temple Grandin, who spoke about the light at the end of the tunnel. 

  

It does get better.  For children who truly have AS, and are not mis-diagnosed, it does get better.  Hang in there parents, I understand that sometimes it's hard just to put one foot in front of the other.  Billy did have his crisis' - one after another for about 5 years.  But with therapy and social skills training, he has been able to "fake it".  The part of his brain that is so highly intelligent has had to train the other part that doesn't understand when a conversation is winding down.   He still has preoccupations, but thankfully they have moved from "light switches" and "fiscal policy" to constitutional law.  In a few months, our beloved Bill will be graduating from university with his first of what we expect will be many degrees.  He is a delightful, insightful, calm, thoughtful and always gentle young man who has come through a childhood that would leave most of us broken! 

  

I only wish Dr. Phil had profiled one of the thousands of "Billy's" out there in the same situation.  You can't imagine how refreshing it was to be in Dallas as that AS conference in a room full of people just like Billy, with successful careers, dreams, hopes and a future.