Topic : 01/17 Extreme Disorders

     My son was diagnosed with aspergers last year at the age of 10.  He has the out bursts and rages all the time.  We never know when they will happen.  Thankfully he has a wonderful teacher that does try to calm him down when he is getting upset but I worry about him hurting her.  When he was three years old  he tried to stab his Great Grandmother in the eye with a screw driver.  Thankfully she had her glasses on.  He spent two weeks in the physchatrict ward but was never diagnosed.  It was said that he had adhd and o.d.d. (opositional defiancy disorder).  Last year he started having grand mal seizures.  I have since learned that this is common with children with autism.  Like the family in tuesdays show I worry about him and how he will be when he is older.  I worry about him hurting himself or others.  All I can do is pray that it never happens .... and always be there for him if something does happen, and try to keep him on his medicines, and keep taking him to his therapy sessions.  When Philip is in control he is the most loving child and would do anything he could to make you happy.  When he isnt in control it is hard to watch him .... but I just do my best to love him all the more.  I know he is my loving son regardless. 

I have been married to my aspie husband for 15 years.   In the beginning he shared with me that he had a chemical imbalance and felt he was wrongly diagnosed as bi-polar.  We have had many meltdowns in our marriage.  I have struggled with how he can be so absolutely loveable at one moment and a completely different person the next.  I saw he was obviously an intelligent man, an engineer (of course), highly respected at work and loved by our friends.  But when it came to the two of us trying to have an adult conversation it was like I didn't know who he was.   I am a very sociable person with many interests.  Big crowds give me energy.  They make him crazy. If we are just with a couple that we are friends with he is o.k.- put him in a big crowd and pretty soon I am looking for him because he is outside somewhere - alone.  I struggled so much with that for a long time.  We have counseled for a lot of our marriage.  The past year we have finally found the counselor that has worked well for us and she brought us to the diagnosis of Asperger's.  I could have cried when I watched my husband read the book about Asperger's by Tony Attwood.  He never-ever reads, but with that he felt as though he was reading his life story.   

I have read some of the Asperger relationship books and they are hard to read to me.  It was difficult to realize that the common ground I hoped our counselor would bring us to would not be found, or not be found in the way I thought anyway.  I have begun to understand more why he is the way he is and the "triggers" that may send him to a meltdown - and I will avoid that at all cost!!  

When we married our 5 children (his 2, my 3), ranged in age from 6-16.  We somehow survived through ALL the trials that kids put parents through, sometimes with 4-5 of them living under our roof.  Now I know why he did not like to go to basketball games, or got upset when  the kids friends came over, or have the continuous unscheduled events happen.  Things that seemed so normal to me were so strange to him.  Now I know why.  The crazy thing was now that it's just the two of us it almost seemed harder, but when we both try we have a wonderful relationship and that's what I live for.  I have found that my aspie is very dependable, loyal, and loving -especially when there is continuity and peace in his day.  I have learned to accept more than expect, and make the daily choice to love him with all his qualities and quirks - just as he does me. 

I have looked for someone to talk to also- I hope that we can encourage each other. 

I am a psychiatric nurse and mother of a 9 year old boy with TS. One of the most difficult things to understand about this disorder is that it is never the same. Typically, the symptoms of TS wax and wane. We will have several weeks to months with almost no tics at all, then there will be several months that are filled with vocal and motor tics. The raging is the hardest to deal with because it is scary. Not only for my husband and I, but for our son. Kids don't want to be out of control! They need to feel safe during those times when they cannot maintain themselves. We hold our son and whisper until he is able to calm himself.  

He is a terrific student; in fact, he has skipped a grade! Socailly, he struggles becuase of the tics at times. The anxiety that goes along with TS is most damaging to him. He becomes afraid, has panic attacks at times, etc.  

the most important thing we have done for him is to get him the help of someone who understands this disorder. Becuase of my work, I was aware of the symptoms of TS, but even then, you don't expect to see these things in your own family .That put me on the wrong side of the desk! Our psychiatrist has made a huge difference, reminding us that this disorder may at times, make us feel like we are not doing a good job, but that is only the disorder talking.  

we remind our son that, although his symptoms may change (many who have tics this severe at this young age do not have noticable symptoms at all in adulthood),this is a lifelong illness. He must learn to deal with it in a way that does not bring harm to him or others around him. We tell him repeatedly that we love him, tics and all! And we let him have time to be the ticcing self that he needs to be without fear of being made fun of. every kid with TS needs a space to "be free".  

i wish you the best as you look closer at your child's symptoms. Find a psychiatrist that you can talk to and that you trust. And start from the beginning with any tics you noticed. It may not be TS, but you need to know if it is! Good luck and God bless. 

Holly 

Almost 2 years ago my husband and I received the diagnosis of AS for our then 6 year old son.We were somewhat overwhelmed, but wanted to do all that we could to help and understand him. We were very blessed & we were able to "assemble" an AMAZING team to work with him. Today, he is mainstreamed in our public school without any assistance. He is doing very well academically & socially. He also plays flag football, basketball, baseball and he likes to downhill ski. He is also a very happy and loving child. He still has some outbursts, but those have been minimized. I feel that therapy  and medication have helped him tremendously.  

We realize that with any change, he can come "undone." However, we have learned to cherish all that he accomplishes every day. He is an amazing little guy! 

For all of those parents out there just getting the diagnosis, be patient and understanding. It is not easy, but with the right interventions it will all "fall into place." 

First of all I would like to thank you for sharing your story. As the mother of a five year old with HFA I can relate to how difficult it can be to admit that your family is spinning out of control. There was a time when I had a hard time talking to my friends and family about some of the aggression issues that we were dealing with. Over time and out of fear of where we were heading I began to seek help for my son. Our peds Dr was not very well educated on HFA or Aspergers and when I approached him with the idea of autism(after the school had mentioned the possibility to me) he tried to brush me off because he insisted that he could not have autism because he was verbal. Thankfully I pushed on an got a referral to the Autism clinic in Indianapolis, IN. Since dx my son has also started meds to help with aggression and the related anxiety. The meds have helped us tremendously. Medication is not the total answer but it was a running start. I missed this show(I was told about it later) but was there any discussion about crisis intervention or techniques that can be used to calm the situation? Once again I commend your family, education and awareness are an essential part of community understanding and acceptance. May God bless all of you as you journey down this long path! 

Lori 

Thank you Dr.Phil for making the public aware of these neurological disorders and for getting the help this family needs. 

Alex needs help with his anger outbursts and his parents Rich and Karen needs appropriate services and support to deal with their son's behavior problems. 

I have a daughter who has Autism, she is also 15.  Since the age of 10 she has been exibiting anxiety attacks and anger outbursts.  It has been very difficult for our family to deal with this issue. 

Just to let you know Rich and Karen you are not alone. 

I thought the show was wonderful.  I am so glad to see that Asperger's is starting to get public attention.  My nine year old son was diagnosed a year ago.  I knew he was different since birth.  Alex reminded me so much of Gunter.  In my case the schools did not want to accept that his problem was more than just bad behavior but with lots of screaming I got through to them.  He is doing better now but had an outburst last Thursday.  He is a big boy.  He is five foot and 117 lbs and only nine years old.  I am five foot one inch and only 100 lbs.   He has never been physical with me until the other day at school.  He was late and he was afraid the other students would laugh at him.  I walked him in to let them know why he was late.  As I began to drive off, I saw him running into the parking lot, crying.  I got out and pulled him back up to the school.  He fought and I could not get him in. I hollered for help and the principal came out.  At this point my son punched me and kicked me numerous times.  He even kicked the principal.  We eventually got him under controll, but I was devastated.  He has never been violent towards me.  He gets angry and lashes out to other kids if he is feeling trapped or picked on.  Also it they are hurting him, but never towards me.  He is more upset than me about the whole deal.  He is the sweetest child you could know but when the switch flips, he is a different child.  It is never out of meanness but out of fear.  At this point the realization that we need more intensive help has set in and we are searching for answers.  Anyway, I don't want to ramble but I wanted to share a poem I wrote for a class that I was taking.  It is exactly how I feel and comes straight from my heart.  I am sure others will relate.  Writing this poem was an assignment but it turned out to be theraputic for me.  By the way, my son has never seen this poem and never will. 

Carrie