I fired off this e-mail to Dr. Phil.

iVillage Member
Registered: 01-22-2005
I fired off this e-mail to Dr. Phil.
29
Tue, 01-17-2006 - 6:21pm

Dear Dr. Phil,

This afternoon I watched your show on Extreme Disorders and Asperger's Syndrome.

I have to say I was very disappointed. I don't feel you gave a fair accounting of Asperger's Syndrome. I fell your views were very one sided and slanted.

I have a 9 year old son with Asperger's.

My son is quirky, he can be difficult, what 9 year old is perfect at all times? But he is absolutely not violent. He has never raged against another person.

He is an intelligent little boy. He is a kind little boy. He is the most caring and loving person I have ever met.

Asperger's, to me, is not a disease. It is a disorder. Asperger's is not terminal.

My son requires some special education help; speech therapy, social therapy, occupational therapy. He takes a bit more time to read than others his age. But he is an extremely smart little boy.

I'm truly sorry you didn't mention any of the more beautiful points of Asperger's. Instead, you focused on the extreme negative.

Asperger's does not equal violence. Unfortunately, I'm afraid that people will now be afraid of people with Asperger's.

I wish you would have presented Asperger's from both sides. I wish you would have been more responsible in you representation of Asperger's Syndrome.

I'm an incredibly proud mom of an exceptional little boy that just happens to have Asperger's Syndrome.

Please take these thoughts to heart before you portray another disorder so unfairly.

Crystal Hanson

iVillage Member
Registered: 03-26-2003
Wed, 01-18-2006 - 10:07pm

Liza,

I understand where you are coming from. It isn't only here either.

The thing is autism and aspergers are a very wide spectrum. There isn't a show in the world that has ever been able to adequately discribe Aspergers or even autism for that matter. It never covers the whole spectrum. There is too much to cover. If you all watch shows from NBC on autism last year they have a whole section on Aspergers. Particularly adults with AS. I think you will find that show shows what more what some others are hoping for. Never before have I seen a show where it talks about the rages some kids have. Honestly, I expected Phil to blame the parents again.

Sure those parents yelled alot and sure it wasn't the right thing to do, at all. However, they have also been living with this situation for 15 years. We have no idea the level of support they have or don't have. The level of frustration they are at after years and years of behavior challenges and not finding somehow to help. Years ago those parents should have started to go to therapy for themselves so they could be better parents and learn skills of how to interact better with thier son. I think they are at a point that they really want to. If you remember, the dad spoke eloquently about what a wonderful kid Alex was. Alex spoke about how he feels and how it is out of his control.

Unfortunately, rages are a very real issue that a fair number of those with ASD deal with. If you question that read "Asperger syndrome and difficult moments".

It isnt parenting (though sometimes that is hard to remember). It isn't in the childs control. It is often sensory overload gone haywire. My son spends his life in fight or flight mode and can easily become overwhelmed.

Behavior struggles are hard to talk about even online because it is awfully lonely thing. Even amung other parents of kids like ours there can be little understanding of this part of the disorder and why it happens with some kids. It can be easy to blame the parents in this situation when you haven't experienced it and it is lonely.

I come from an odd spot. I have 2 aspies. I have an extensive background in educating kids with autism that predates my kids. Only one rages like this the other doesn't. Is this because of my parenting or more thier own personalities and how thier AS affects them. Cait meltsdown (rarely now) but it is more a personal overwhelmed meltdown. She doesn't aggress and never has. She cries and may yell at me some but I have never been afraid of her, had to restrain her. She doesn't self abuse and she doesn't agress.

It is a totally different life when you have had to restrain your child in public because they become a danger to themselves and others. It kills you to the bone to see your child slaming thier head into a cement wall. To see him throwing chairs at other kids.

I dont yell. Well not usually. We all have our breaking point. I have never told my son that I don't want him in the family or I don't want to be in the family (thought it though on occasion). I will admit my humanity, but for the vast majority of the time (at least 90+%) I am calm, neutral, consistent. Yet my son still rages only usually not full rages with me. I can see them coming and know how to head them off. He rages at school. Rarely and he has wonderfully neutral teachers thier. I don't think his teacher has ever lost her patience with him.

It isn't the parents fault. Sure none of us are perfect, but there is more here to play than our imperfection.

Liza, I understand how alone you feel in this. If you want email me at renee@asdrendrewolf.org

Renee

Photobucket
iVillage Member
Registered: 09-12-2003
Wed, 01-18-2006 - 10:45pm

I am sorry Liza if I offended you ,your right I don't know what kind of support these people have and I am sure they may lose it sometimes , but I also do know that they are their childs best chance to being understood. Hindsight is 20/20 there is a very big spectrum out there and I know Dr. Phil could not have covered in an hour but by opening the show by saying a boy diagnosed with asperger's syndrome murdered 2 people you and I both know people who watched the show will mostly remember (some guy with asperger's murdered 2 people and well their all violent). I may have judged the parent's to harshly , in all I really felt very bad for that boy because he feels the sticks and stones being thrown at him thank god my son doesn't question much his quirks .

SORRY
Tammy

Avatar for littleroses
iVillage Member
Registered: 03-28-2003
Wed, 01-18-2006 - 11:46pm

Renee,
Does your son have seizures? I know this isn't any revelation, but I know there are rages that are seizure like. My brother in law is not AS, however he is type I diabetic and when his blood sugar was low he would be out of his mind (to quote his parents). What really stuck out to me about the boy on the show was how he described how he felt when this would occur. He described a headache and some other things that seemed like seizure event of sorts to me. My oldest daughter would have night terrors. They were quite different from nightmares. I also believe these were a seizure event of sorts, though she has never had a classic seizure. She no longer has them.

Of course, my youngest daughter is on epilepsy medication. It also happens to be prescribed for those with migraines. It also happens to be prescribed for "mood disorders". So, I don't know if she would be a "rager" or not technically speaking. The doc suggested it may also be making life easier by controlling her moods as well. She's being on it since she was 15 months old so I don't know what she is like off them.

I feel both the parents and the child all felt so trapped.

iVillage Member
Registered: 01-22-2005
Thu, 01-19-2006 - 7:35am

Liza,

I ams so sorry you feel ganged up on. I never intended for that to happen.

My problem with Dr. Phil was that I felt just wasn't responsible in presenting Asperger's. I don't question that Alex was having a difficult time controlling himself. I can completely understand that his parents were at their wits end. I just felt like he could have presented Asperger's in a more rounded way.

I am so sorry you were hurt.

Crystal

iVillage Member
Registered: 02-24-2005
Thu, 01-19-2006 - 8:15am

Liza,

So sorry for disregarding your feelings and situation. I was only bothered by the fact that those parents didn't seek more info on Aspergers so they could better deal with it. The posts that I've read from paents here indicate most do research and are trying to learn how to deal with their AS children. For them to be yelling at him to stop doing things that are beyond his control made me sad. My in-laws have began on this tack by telling my 8yo AS son to quit being mean and "pull your bootsraps up and get over it son."
My son can no more understand his emotions much less control them most of the time. Those parents seemed like they loved their son very much but somehow had learned very little about the disorder. Maybe they didn't have access or know how to access infor. on AS so I really shouldn't judge them for that.

A more rounded approach detailing AS would have been preferable. I don't mind them showing all aspects but put them in perspective and explain why the kids do this beyond saying they're brains are different. How about throwing in theory of mind, sensory issues etc. Heck, my son has more acronyms ascribed to him than I can list so I don't think he's better because he doesn't rage but this is beginning to be the prevailing impression the media are leaving with the public. Again, sorry for making you feel not accepted. Vicky

iVillage Member
Registered: 03-26-2003
Thu, 01-19-2006 - 9:24am

LR,

That is one thing I have always questioned but his neurologist didn't think so. Instead she recomended putting him on a major med (mellaril). Both Cait and Dave have had seizures. Cait had partial seizures. She may still at night because the seizure meds she was on never cleared her EEG but she didn't have any clinical ones on record that we could definitely tell so she is off them now. Dave has absence seizures when on stimulants and an abnormal EEG. Mike has had a couple episodes I thought may be related to seizures but then again may not.

We have had him tested for diabetes a couple times.Funny thing is, when we took him off meds adn changed his diet to no sugar his behavior drastically improved as well as all the diabetic type symptoms (constant thirst and urination, bed wetting, mood swings if he got the least bit hungry, food obsessions). We have been back no sugar for a couple weeks now and never went hog wild over christmas so I don't understand why the behavior is back.

Renee

Photobucket
iVillage Member
Registered: 03-26-2003
Thu, 01-19-2006 - 10:21am

Here's my two pennies on the Dr Phil show......

I knew it was not going to be a fair portrayal when I read the title of the show...."EXTREME Disorders".......I believe he wanted to say Bizarre but decided on extreme instead. AS is not extreme....some of the behaviors/reactions can be extreme (like Alex's rages). It also was very unfair to have the violent shooting story to preceed everything.

I KNOW people who watched this show (who have never heard about AS) are going to have the totally wrong impression of what AS is....

For example....my mom-in-law (who worships Dr Phil for some unknown reason), called and asked if this is how my son is at home.....I had to explain to her that AS is as individual and unique as the people who have it. I do know that AS kids (generally) are easily overwhelmed and frustrated....but how they handle that is different....some meltdown, some rage, some withdraw, etc. I know in the back of her head she is trying to decide if she should keep the younger cousins away from him....thinking he is going to be violent. Thanks Dr Phil....

As far as the family they picked for the show.....I would be really interested in knowing what type of interventions/services he (and his family) has received over the years. I didn't hear anything on that subject.

I feel for the parents....I think we all understand being at the end of our ropes....some days more than others...

Dr Phil held true to form.....he provided an "expert" who is going to work magic and make everything all better (the guy providing "brain-based therapy") - that is something I truly despise about the man.....he has a quick fix for everything.

All-in-all, I'm truly disappointed that this chance of getting national exposure has turned into a negative image of what AS is...

Christie

iVillage Member
Registered: 10-24-2004
Thu, 01-19-2006 - 10:32am

Sorry if anything I said made you feel bad. I too could relate some to the show. My DS has had his share of rages also, and I had a few screaming matches.

Relating to the show or that the show showed the “rage” wasn’t necessarily a bad thing, my problem with the show was that it showed ONLY the rage. They didn’t try at all to show the AS problems or how parents can better deal with it. I probably didn’t get as much from the show as I could have because the murder intro irritated me so bad that I could hardly listen to the rest of the show.

It was just too bad that Dr. Phil didn’t take time to help understand these rages and give parents some idea on how to handle them instead of showing us a brain scan . . . I’m sure that helped the families at home trying to deal with the same rage.

iVillage Member
Registered: 03-26-2003
Thu, 01-19-2006 - 1:12pm

Being a vetran of autism and many many many shows and public awareness campaigns about it, let me say I understand everyone's point, however, this problem isn't exclusive to Dr. Phil. I have never once seen a spot on autism or aspergers that I felt accurately portrayed what it is at all.

Last year I think it was Jane Pauley did a full hour on it. Her cure of choice was therapy dogs. While I agree that therapy dogs can be a good thing (we had a mom here who got one and it was great) it is not a cure. But according to that hour, you would swear that if you just got a therapy dog for your aspie, they would be cured! My in-laws thought so and gave us grief for a long time on that one. You should have seen the grief she gave my SIL who had just given away thier new dog because it put too much stress on the family.

Also, according to her, you would thing AS was some mild little glitch thing. Not a big deal. One family said "at least my child isn't autistic". (I think it was on that show) and after that you should have HEARD the autism community and parents of kids with autism raising heck.

Heck, I will be the first to say that in general I am NOT a Dr. Phil fan. However, previous to this I had heard he didn't even believe in AS. And I have often seen shows where he just laid blame on the parents and the child and left me with a really creepy feeling in my stomach. Maybe because I had such fear of what was going to be on that I didn't think it was that bad in that respect.

I agree it could have been much much better. I agree with everyones concerns but I will say that I don't think it is ever going to be better. I don't think the lay person is ever going to understand it from these shows. But it is nice the awareness is out there.

Unfortunately, it is a sad fact that there are at times Aspie's who do commit crime and get in trouble with the law. That one boy mentioned at the beginning of the show wasnt the first time. It is not a common occurance but it happens. Hopefully with better awareness, understanding and treatment it will be less and less.

Renee

Photobucket
iVillage Member
Registered: 10-24-2004
Thu, 01-19-2006 - 1:53pm


Unfortunately it is true, Dr Phil isn’t the only one to give an all too brief (bad IMO) example or explanation of AS /Autism. That is one of the reasons I decided to write, hoping to maybe get a show with some good detailed advise and info. Though probably impossible sense the spectrum is so wide and every child is different. Fortunately for us my DS’s AS has become just a mild little glitch. (But it sure was a long miserable trip getting there.) Looking at some of the famous people with AS (Gore, Gates etc) it can in some cases be over come by adapting. Then there are probably those that never learn or can’t learn how to deal with it and suffer because of the ignorance of society. Another reason for a need to show all views so Autistic people are not stereo typed and able to be treated and respected as individuals.

I am sure Aspies commit crime and get in trouble so do people with other problems and sometimes those with no problems at all. It was just wrong ( IMO) to start a show out on such a negative note. (They never start out a diet show with a fat person stealing food but I am sure it has happened. )
That is probably where I was wrong. . . . I was so horrified by the way the show started that I doubt that I even heard most of the rest of the show.


ITA, unless they get too many letters from those of us who want it to get better. ;o)