Topic : 01/17 Extreme Disorders

Hi 

I saw your post and I just want to add my two cents. I don't believe in medicating for ASDs. No, I am not a dr and any kind of health care worker - just a parent of an ASD 8 yr old boy. I have researched the issue and there are many people with success stories from meds but many unsuccessful attempts too. It takes work to raise a son with this disorder and not everyone can do it. If you have the will and the time to dedicate to him you can do it without meds. Yes, you will lose hair by the fistfuls (of your own doing!) and you will rethink the situation over and over again but the meds they use for ASD in my opinion alter the personality of the child. I once read that there was no safe medication for a child because studies for most drugs have only been done on adults. Children are not adults nor are they miniature adults. Their brains aren't fully developed yet and might be altered by medications. Time and a whole lot of patience and understanding will get you through this. Push your son's school for whatever you can get out of them and then push a little more. There are many things that you will find to help him other than reaching for the pill bottles. I don't work just so that I can be here for my son - so that I can work with him on everything from toileting to homework. But I am lucky enough to have a very supportive husband. I can't say how it will work with twins but I do have a 13 yr old girl so I have to divide my time accordingly. Go to the library, bookstore and web and get as much info as you can before you make your decision. Meds aren't necessary and I am against them but that doesn't mean that everyone who uses them is wrong or a bad parent. I'm sure you will get a lot of responses praising meds and that will be great but to answer your question - no they are not necessary - you can do it without. 

 I have two children with asperger . One of them has rage and fits, and the other one does'nt . Neither one of them knows that they have asperger,they are to young and would not understand. So they dont have fits and act out , beacuse they have been told there hole life. They do it beacuse it is part of the disorder. Your child does'nt have fits beacuse it is not one of their problems, not just beacuse you never told them that they have asperger!

     Hi all,

I also have 2 children that work with Aspergers Syndrome.  My younger son was DXed 5 years ago and my older son was DXed just over a year ago.  Both being Dxed ADHD first.  My younger son also seems to have a side of bi-polar to work with as well.  I hope that this show shows the facts both good and not so good.  This is a DX that people need to learn to understand.  My mom has been trying to get me to write to Dr. Phil in regards to AS, but I am rather the behind the scenes type person.  This child that is being shown can hopefully get the help he needs.  We must however make sure that people understand that not all AS folks are like this and that there are ways to help these kiddos.  My younger son could easily be considered an extreme case.  We do deal with meltdowns and they get very physical on his behalf.  We do have to deal with meds, we do have a special education school building that he attends.  I feel he is on more of the extreme of the AS DX but as stated above there seems to be some BP in it as well.  My older son is in a general education setting but does have to have modifications to smaller classes and so on.  But at the end of the day they are both doing so very well.  We do soooo many reminders, but other than that and the meltdowns they are both so wonderfully smart, want to go to college and want to be engineers.  They are also both very ethical which for a teenager is such a wonderful aspect! My older son volunteers, participates in after school activites and joined student council. Granted he really has no freinds but he still tries to be a good leader.  There are a lot of programs out there to help families, true it is an awful long process of paperwork and interviews at times just to get your child to have the proper support for a recreational class, but it is worth it when they are able to do the classes like others. 

Thanks for reading, hoping this episode is done well and helps to educate the general population to all aspects of AS, not just the negative ones.

JAN

My son, who is now 10, was first diagnosed with ASD at age 5.  I didn't believe it though because at the time, I didn't understand Autism and was pretty scared of that word.  I rejected the diagnosis, which came from his school.  Now, I am trying to get the school to re-diagnose this disorder, and I am hitting brick wall after brick wall.  We went through testing last year and they called me in for the results, and I have never been so humiliated in all my life.  I was there with the principal, vice principal and several teachers that were involved with the testing.  I was told that he had "Only Child Syndrome" and that he was just spoiled.  Wow...I went home feeling like the worst mother ever.  But, the more I thought about it, the more I knew they were wront.  Almost all of their tests were multiple choice....well, I know he's smart and can answer the way he's supposed to, but put him in a room full of kids, and it's totally different.  They didn't seem to want to hear that.  They only observed him for 20 minutes (in a non-group activity) for the testing.  I am currently working with an autism advocate in the state where I live and trying to retest him.  I do think that now that I know and better understand his situation, it makes it much easier to deal with at home.  Now I know why he has the reactions that he has.  ASD has taught me patience and love that I never would have thought I was capable of. 

Does anyone know how to go about getting an official diagnosis for this?  My husband started showing signs of this around age 9 or 10.  The past 7 years or so it's gotten very bad.  He doesn't have all of the symptoms that Dr. Phil shows on his website, but I bet he has about 80% of them.  I've talked to a previous Pshycologist of his about this but she kept saying it was only OCD.  He and I know it's so much more than that.  In 3 weeks he sees his psychiatrist for anxiety and depression again.  Should I mention it to him?  Go to his regular doctor?  I'd like for him to be diagosised so they can try treating the right thing finally!!  He doesn't loudly blurt out words - but he will mumble them over and over - and doesn't even realize he's doing it.  When I mentioned it to him today - he told me he never even knew he would mumble words doing his tics.  He had bad muscle tics - that's how it all started.  The mumbling words just started a few years ago.  Any others out there with any helpful tips? 

I saw the show with Alex and Asperger's. Where in OHIO can i get some HELP for my teen's AS? I'm pretty sure we live only an hr from Alex, as i heard on a local station where he's from- a local boy on Dr. Phil. So can Karen give me some direction? When watching Alex on Dr. Phil today, several times i just about cried as i saw clips of Alex and it was like seeing my son! My son's anger outbursts were much the same, but when i saw the few seconds of Alex as a toddler on the floor rocking and banging his head... it was my son Gabe! Gabe did it sitting up too, including banging against the crib or wall. But the pediatrician dismissed it! along with all the upsets and crying- all dismissed as normal. Now i know it's the sensory integration problems. At least he'll wear sox now! We've lived for 16 yrs with the autistic symptoms and my futile attempts at getting help, only ot be met with responses like i'm a crazy or worried anxious Mother. (ok, so i'm anxious and depressed... now what about my son's autistic spectrum symptoms!? Ha!) Until last yr when, our highly intelligent 15 yr old Gabe shut down, not functioning. The Zoloft triggered even worse violence, which i had to "fight" to get the med changed to a mood stabilizer. And it worked! Lamictal has helped his emotional mood swings. I had recognized the symptom of a anti-depressant indication Bi-Polar. So he was diagnosed with Mood Disorder NOS, b/c he didn't neatly fit into Bi-polar. Then at OSU Medical Center the p-doc first diagnosed him with PDD-NOS, Pervasive Developmental Disorder- Not Otherwise Specified. That's one of the 5 Dx's in the Autistic Spectrum Disorder. I know Gabe meets the criteria for Asperger's, although he hasn't been formally evaluated; i'm working on that. But finally i just got his P-doc at OSU Medical Center to acknowledge Asperger problems. The Dr explained that AS was really the foundational problem and the mood symtpoms are really a result of the AS. So Gabe has dual diagnosises of PDD and Mood Disorder. Still, our main problem is getting help at School, where they don't see any problem. He's getting mostly A's again, so what's the problem? They don't see the inner turmoil Gabe has, the social problems and all the effort, anxiety and exhaustion that results. Then, because he's not getting treatment to learn social skills, to learn how to process and deal with the emotions, we see the behavior symptoms at home. It's a big mess with the school system b/c he is in private school. We spent all last yr getting the MFE and then IEP. But the private school needs a separate Service Plan. Not to mention they just put Other Health Impaired for his problem needing services. The services he has in his IEP is basically a joke- it's nothing. So we are trying to get it changed to Autism. It's taking forever... He is in 10th grade and is so intelligent he plans to go to college. I feel like time is running out, if he doesn't get the social and living skill problems addressed so he could live better on his own. I wonder, is there any of these treatments for AS available in OH for my son? And how do i pursue them when finances are crashing. Having him in private school IS basically part of his medical treatment plan to keep him functioning better. Where do i put most effort to get him help?

The children that have been diagnosed with the disorders are fortunate.  They have the opportunity to improve their lives and the lives of their families.  I feel sorry for the children who never find out exactly why they do the things that they do.  In some cases, this can put the public at risk, especially in public schools.  The parents that are "in denial" need to wakeup!

I apparently am a genetic carrier of Tourette's Syndrome. It was not diagnosed until my Son #1 (he is an identical twin) manifested symptoms around the age of about 7yrs. Son #1 started with what we just called "constant nervous habits". His ticks which seemed to roll from one habit to the next (every 6 months): eye rolling, constant sniffing, hunching his back up to his neck, etc. His twin brother (Son #2) did not display any of these behaviors at the same time. He just seemed to be hyper, have severe mood swings, and a terrible temper. At first, my Spouse and I chalked it all up to too many TV hours with Nintendo, colorfull flashing cartoons, and normal "hyper-active-boy" behaviors. We moved from one state to another, and the ticks worsened...then we all went through a VERY stressful, harsh, cruel, and long lasting (about 10 years) divorce. During this time, My Son #1's ticks became so annoying to his father, that he pronounced it must be "epilepsy", and we should go to the doctor to get medicine to treat what he called "twitching seizures". We went to our family doctor, who referred us to a Neurologist .. After 1 interview of all three of us individually, the Neurologist prounounced it as NOT Epilepsy, but Tourette's Syndrome. Furthermore, she said it was passed from my side of the family. How was that possible, I asked? She said that during the observation interview with me, while discussing my family members: My Mother's finger tapping, counting, sniffing, etc., my Brother's snorting , sniffing, finger tapping, making faces, and my sister's obsessive counting of stairs, finger tapping, face making, etc, she noticed my own (very slight) facial twitches, eye blinking, constant movements in my chair to hold my posture, and constant repeating. After that interview, she handed us pamphlets, said she could not cure it-only treat the symptoms by giving us meds to help calm/relax him, and suggest ways to help him control ticks at school, then release them at home. My Son #1 suffered so much during those years that in school, he became either Class Clown to disguise the ticks, or quiet to shrink into the background. Then he would come home to tick uncontrollably. My EX had decided after that particular first appointment and finding out my Son #1 did not have epilepsy, and he did not believe it could be genetic disorder problem, so he just chose to forget it , and not help with ANY of the meds, appointments, or therapy issues. I had to take control of my Son #1's health, so I: paid for the constantly changing meds, constant dr. appts with the Neurologist, tried to maintain a calm houshold (yea right), and to keep daily journals to identify patterns, and figure out ways to cope with this disorder. I developed behavior forms to be filled out by teachers, and had weekly meetings with his teachers to discuss changing game plans. This went on for years, we held up hope it would decline or go "dormant". It seemed to fade by the time he was about 17. As for my Son #2 , he never did develop outward signs of Tourett's, just terrible rages, arrogance, seething & loathing hatred for me because of the divorce. My Son #1 actually has stopped most of his ticks now (age 23) only seems to tick when he is supremely stressed. As an adult he has chosen a profession that is very stressfull: Firefighting and Emergency Medical Technician (paramedic). He just performs his jobs, only ticks when very tired or stressed. I do not see him daily, and we talk on phone or he comes over about every 2 weeks. He is now in a serious relationship and will wed this Spring. He has not told his finance about this Tourettes and does not discuss it with me; I know it is because his dad made him feel ashamed. He and future Wife fight now all the time, it is a very unhealthy relationship, and I fear the stress wil bring back his ticks to the surface. Here is my personal dilema: Do I bring up the Tourette's, and tell him that he owes it to his finance to tell her about it? They are already so rocky, I am sure this issue would not help. Maybe I should I tell her? What if she turns on me, and/or my son and breaks it off-while pregnant. She happens to be pregnant now, and the Tourette's gene may or may not be passed on, only time will tell. My Son does not dare bring up anything negative for fear she will go wild with anger... Should I just let it go? I just have tried to not-think Tourettes, but the guilt has always been in the back of my mind. I have anguished over passing it on to my kids, and possibly grandkids. I can not do anything about it, but hate myself for having it in my genes....that is it. (Phew! I just feel better by putting this down on paper).

I have a mild form of Autism.  It's probably Aspergers now, but at the time I was diagnosed, it was an extreme form of Autism. (48/50) The thing that probably lessened my Autism was 2 things; I was diagnosed at 18 months, and my Mom and my sister never gave up. Now I'm 13, and I'm basically like a "normal" kid, I talk, don't throw fits fits (though I can get a bit moody like all teens do), and I soical with other kids. One thing I probably recommend to other people that have kids with Autism is to keep them around other people that don't have special needs. I think being around kids without special needs helped my social matters a lot. I'm not saying I'm prefect, I have things about me that I find harder to deal with then other do. I have to work VERY hard to figure out a social situation, and I find it hard to forgive people. I work hard, get lots of A's (sorry had to say that), and I know that I'm lucky to be able to type this.

I was totally against any pharmaceutical medications, always going for alternative answers- herbals, homeopathic, diets. And we coped with our AS son without any meds until he turned 15 and got so upset so frequently, so depressed and then just shut down. An A student drop-out. The antidepressant made it worse- more violent, but when we tried a mood stabilizer the only one known to target depression (Lamictal) he soon changed into a new person! He's back finctioning and better than ever. I don't say this to really advocate for meds. I do agree with you somewhat. I'd research and try anything else first. But if your situation is desperate and you HAVE tried alternative things, then I'd say consider meds. It is true that the meds are not curing, only treating the symptoms. So make sure you (and the Dr) are getting the correct problem targeted for med treatment. Like is it more mood/anger, or is it attention? Maybe it's a sleep problem making them so tired they're moody, so target getting better sleep- supplements or meds for that, for example. Actually, a scheduled sleep routine also helps my son have less mood outbursts. But when it was heading into life-threatening direction, either suicidal or maybe he'd seriously hurt one of us, then it was not time to slowly & carefully try something new on our own. Unfortunately, altho i would have liked to have a medical professional to take charge with something alternative, that was not available where we live, so i had to try a medication. I'll agree, my son does have some side effect of feeling fuzzy, but he doesn't want to change it or reduce dosage. He says his sturggles with that and schoolwork are better than the other emotional upsets. It can be a life-saver, and a family saver. I do hope he might be able to wean off it someday and find a better substitute, but for now, i know it's better to keep him stabilized for awhile-- months if not yrs.