Topic : 01/17 Extreme Disorders

I'm new to the boards, but I am the mother of a 14 yr. old boy who has been diagnosed with "high functioning autism."    Watching the show today about Alex was like watching my son Keith.  I just wish Keith could express himself verbally as well as Alex.  Keith is very verbal about things that interest him, but he can't seem to express what he's feeling.   

I have a 24 yr. old son and 22 yr. old daughter and they have been wonderful with their brother from the beginning.  All the strain took it's toll on my marriage and their father and I divorced 7 years ago after 20 years of marriage.  That part didn't really seem to bother Keith since their father was an over-the-road truck driver and was seldom home.   

When he was younger, there were frequent outbursts of aggression...mostly when he was non-verbal.  Once we got his speech back on track, the outbursts became less frequent until about 2 yrs. ago.  I was told that the escalation of aggression was common with the onset of puberty.  Then to make things worse, his father died last year unexpectedly.  The aggressive outburts have really escalated.  The first 2 weeks of school this year, I was called to the school 7 times because of his aggressive behaviour.  Most of it was directed toward desks, file cabinets, etc.  Most of the outbursts occur at school, but they have spilled over at home too.  He has made comments of burning or blowing up the school and killing people....but only when he's having an outburst.  It can be scary sometimes.  Not that I think he will do it....but what someone might do to him thinking he really means it. 

The school has not really helped things out either.  Now that he is bigger, I think he intimidates them (all his teachers and aides are female).  Our new principle is an ex-police officer and takes everything very literally and has NO concept or understanding of autism.  They have made it very clear that they would prefer he was in another school.  It has been a constant battle.  He is the oldest of only 3 autistic children in our school district and they just don't seem to know what to do with him. 

I remarried 5 years ago.  My husband really tries to understand what is going on.  The aggressive behaviours are starting to take a toll on us.  There are so many good days.  He's a very bright boy....has an amazing audio memory....a whiz at the computer and video games.  He's a natural comedian and can make anyone laugh....but when the outburts happen, they are so intense it overshadows all the good stuff sometimes. 

When he does finally meltdown, sometimes he looks at me crying and says "Mom, I don't know why I do some of the things I do.  I'm sorry.  Why do I have to be different?"  It just rips my heart out. 

We live in a very small, rural community.  There are no support groups and very few other autistic children.  It's really hard sometimes.  I used to really trust and rely on the school system, but not anymore.  I just get so tired sometimes. 

I am very happy to see Asperger Syndrome addressed on the Dr. Phil show.  When my son was diagnosed alot of our family and friends felt he was wrongly diagnosed because of his rage attacks.  My son, Josh is 12 years old and I felt I was seeing myself and my son  through a mirror.  I can so feel this mother and son's pain.  My son is on some medications, but it doesn't keep him from getting fixated and stuck on issues. Once he starts to get stuck (beginning stages of his meltdown) the best thing I can do is be supportive and consistent.  This is very easier said than done, especially when it happens daily or multiple times throughout a day.  It totally wears me out and I find myself depressed and exhausted.  I have been told in the past to take him to a neurologist, but have put it off due to other doctor bills.  I think after watching the show I need to find a neurologist experienced in brain imaging and Asperger Syndrome, maybe they can help him feel calmer. 

Once they have a brain scan, do they use medication to treat the areas that are not fully functioning, and are there other treatments the neurologists use for social skills? 

Great show for awareness, I taped it show all my friends and family! :o) 

Connie 

Kansas City Area 

 When I said I have Asperger's Syndrome, that means I have a form of high-functioning autism.  When I was diagnosed as autistic at 2 years old, I had the severe form of autism.  

At 17, I feel like I'm a normal person.  I am also very verbal (I guess I can be a chatterbox sometimes, lol!), and I'm social with other people. 

I also find it hard to forgive others.  At one of my local grocery stores, I saw one of my old friends.  When I was in 8th grade and she was in 7th grade, she stole one of my watches.   She gave it back and apologized the next day.  I forgive her and I'm willing to remain friends with her, but I find it hard to forget.   

Because of my good grades in high school, I believe I might graduate early.  Now that'll be a big accomplishment I'll be making.  I want to make all my friends, family members, and former teachers proud of me. 

I feel very lucky that I'm able to tell others my story.  I also hope that it will make a difference in others' lives. 

I am having alot of problems with my son.  First, He is very hyper, climbs on everything, gets into everything, wont listen, hits himself, has bad fits over just about anything and no matter what I do he stays this way.  Most of it started around 1 " fits " to 2 " hitting himself ".  It has just been getting worse since.   He also will not look at me even if I hold his head he is looking somewhere else.  He talks fine, walks around fine.  When we go to church they have to normally have 1 person just watching my son.  If they do things/ activity's with the children he wants no part of it.  He is very definat!  He is in his own little world.  He doesn't get along with kids.  He either ignores them, annoy's them or is mean to them.  Should I think about aking my son to see someone to be evaluated?   

Thanks,  

Jamie 

Ok, last post for the night, 

SARRC Southwest Autism Research and Resource Center is a GREAT tool.  I know it is not very well known, I understand that it is NOT nation wide and that most of you cannot get to classes offered by them.  BUT, I challange everyone in this, if asked for and if referrals are obtained, I believe with all of my heart from working with these people in the past that they WILL at least point you in the direction of help and if not, they will send you, possibly for a fee, the info.  They are wonderful, loving, caring people who get the spectrum. 

Dr Phil, I personally challange you not to let this go.  I personally challange you to take this on as a cause.  Because I KNOW it is growing, I KNOW it is affecting hundereds of thousands of families in this country.  I have looked, I DO know.  Dan Marino is a father of a child on the spectrum if you need a high powered name to use, he GETS it.  Dr Melmed in Scottsdale AZ is my dr I use for my son, he GETS it.  He is also the medical Director of SARRC, and he LIKES to speak out and help these kids. 

I along with others I read posts from, were hoping for more tonight.  I really was.  I was hoping for more than a spotlight on the worst of it, I was hoping for more on the good parts, like the high intelligence level of these kids and some real life answers that we could hang our hats on.  I WILL look into the scans, I am a single mom and financially it will be hard to afford, but I will look into it and any treatments available discovered by it.  But help us!  This just wasnt enough, we need more.  DDD does not recognize our kids unless in the system before age 6 and even then they tend to kick our kids out after age 6.  Fact!  The govn't does not help with this disability and it can be more profound than they realize.  It effects every aspect of our kids lives. 

And as you probaly get already, it affects all of their family also, my mom, his grandmother got a new prespective tonight, but even she said she needed more, real life tools that might help.  So I challange you not to let this go, to take it on more.  I even volunteer my own family as a case study because it has gotten to the breaking point.   

I don't agree with a mother cussing at her child as we saw tonight, but I can honestly tell you I have hit that point too, many more times than I like to admit.  I have also hit the point of spanking as hard as I can due to frustration and that I cry myself to sleep after every single one of these instances because I BELIEVE in some way, it is my fault.  Whether due to my service in the gulf, my ex's family hx of Tourette's, which I acknowledge I did not pay attention to, I didnt understand.  I believe in my gut it was somehow my fault, whether it was my service in the gulf, my smoking while pregnant, my marrying a man with a family hx of tourette's, or exposure to vaccines outside of this country.  I did all of those things to my child.  How do i stop blaming myself?  The evidence is quite overwhelming I did it in one way or another. 

How can you REALLY help?  Not just show us off and raise understanding, which we do need, but most of all we NEED help we BEG for it. 

Jen 

I have a wonderful, kind,brilliant 8 year old son who was diagnosed with AS at age 5.  He has strenghts and weaknesses just as we all do.  What is "different" about him is that his strenghts far outweigh his weaknesses. He knows all about AS and he knows it is an excuse for nothing and it is ABSOLUTELY noting to be ashamed about. He has a nice circle of friends who like Ben for Ben and respect him because he has earned their respect.  He is my hero.  All that is wonderful in this world is in my son, and none of the judgemental bigetry and nonsensical hatred.  He sees no logic in it.  I am growing more and more tired of asking my son to change to accomodate a society that expects us all to be cookie cutter models of each other.  Dr. Phil's show gave a naive audience a glimpse of the dark moments in the life of an adolescent with AS.  All people have those moments.  Fortunately they are not aired on national television.  Dr. Phil, I am also a teacher of children with autism spectrum disorders and there is not a day that goes by that I am not in awe and inspired by them.  The world needs to see this side of AS and ASDs, so that these unique individuals can be embrassed and encouraged.  It is this population that has been given gifts beyond those we can understand.  They can and will change this crazy world.  By the way Boston Legal aired tonight and had a story line about AS that was handled significantly better than Dr. Phil's version.  Too bad. 

Michelle  MSEd 

Benjamin's very proud mom