If I may....

AutismMom

AutismMom

Active Member
I would like to present an article (albeit 3-years-old) that I stumbled across today and found most refreshing.

I don't agree with 100% of the views expressed within it, but it comes from a source that isn't getting enough media coverage these days. We're all hearing plenty about autism, and finding a "cure", from celebrities and outraged parents. We are even getting reports on local news outlets now. Autism awareness is, of course, a subject very near and dear to my heart.

My son was born with autism. He was diagnosed with PDD-NOS at age 2, and diagnosed autistic at age 3. He is by far the most beautiful thing my heart has ever known. I could not possibly do him justice by trying to describe him to you. So let me move on. ;)

I have found myself annoyed at the term "cure". Autism is not a disease. It is a neurological disorder. Don't misunderstand me -- I am not denying that there is some elemental factor that is causing regressive autism, and I am absolutely appalled at the increasing number of children being diagnosed with autism.

However, I just don't totally agree with the message that is being sent by many of the advocates that are getting so much air time recently. Particularly those on Oprah. Jenny McCarthy did an amazing job showing that living with an autistic child is not all doom and gloom, which is exactly what the Autism Speaks people portrayed IMO.

So before I get too high up on my soap box, I just wanted to share another perspective.

That of autistic kids and adults, speaking for themselves. What a novel idea!
http://www.nytimes.com/2004/12/20/h...and&adxnnlx=1190323337-QKprrQlSa3beG6bT9/s2CQ

I am open to reasonable discussion, and happy to answer questions, but I honestly am not looking for controversy. I just really feel that these people have their own voices and they deserve to be heard. I thank you all for taking the time to hear both sides of the story.
 
Thanks for the article.

I don't know much about Autism at all. I have a really close co-worker who has a child with Asperger's. I would really like to be more informed and aware of what she is dealing with outside of the office.

If nothing else, this article will hopefully make me more educated about what she and so many others are dealing with.
 
what irks me the most is that schools, and drs, are so quick to 'label' a child. That's ridiculous! Why can't a child just be a child!

I know that the 'specialist' were so quick to label my child so that the state would give the school money to 'treat' him. He's considered special ed because he has dispraxia (which is a speech issue).

Sorry about my mini rant, I just hate that people are so quick to label children.

Jessica
 
As a (music) teacher, I have found children with autism to be some of the most fascinating people I have worked with.
 
I am interested to see what the public will say and do about childhood vaccinations after this last Oprah Winfrey episode. I am also looking forward to my sons' next pediatrician appt. to see what the doc's response to this is as well.

Jennifer
 
As a parent of a 19yo autistic son, I was angry that it took so long get my son labled. When you have a child that is needing special education you want that label. You still have to fight tooth and nail with the school district but you have the weight of the law on your side. What's the worst thing that can happen if they blew the diagnosis, he's 4F and can't be drafted, I think we can live with that.

At first we were looking for a cure. Now we want to see out son fit in and enjoy life. He graduated high school with honors, he's an Eagle Scout and holds a purple belt in Karate. He can't seem to get a job in spite of impressive computer repair skills because interviewing is a disaster.

He has a girlfriend (who is also autistic). No other young lady paid him any attention throughout high school. In spite of great camaraderie in Scouting, no other boy ever invited him to hang out.

My wife and I were 30 when he was born, the average lifespan for males in my family is 80. At some point my son is going to be alone, he will need a job, a home and some friends. He will have to curb a few odd quirks and fit in.

If we'd listened to some of these advocates he'd still be sitting on the floor rocking himself.
 
i am a speech/language pathologist,and i work with many children on different levels. you would be surprised at how difficult the diagnosis on the iep we get makes things. most children come in as "speech and language impaired" because it is generic. many parents are afraid to have their children labeled autistic or pdd. then when we try to fight for their 1:1 sessions, it is very hard to justify. the ones above only see a diagnosis. we had a meeting with our principal the second week of school and she said that everything is being looked at carefully. meaning, statistics and labels. they dont see the child, and this is starting to cause major problems. too many parents are in denial.

the good news is that we have started a "nesting" program at our school, and it has improved with autism awareness.

suri
 
Thanks for posting this article. My 10 yo DS has Aspergers along w/ ADD, ADHD and I know how hard it is to have a child with these kinds of issues. It's hard for my son to be rejected by most of his peers because of his behavior, hard for his teachers to know how to best reach him, hard for my 12 yo DD to understand that her brother can't help being what he is. I'm grateful we have a label for him because it allows him to get special services he wouldn't be entitled to otherwise. I agree that much of the problem in the "cure vs. tolerance" debate has to do with the wide spectrum of autism behaviors. My son is at the "highly functioning" end. Even his Aspergers is considered mild and for that I'm grateful. I don't think it's wrong to push for a cure and I don't think it's wrong to push for more tolerance. I think both views are valid.

Jonahnah
Chocolate IS the answer, regardless of the question.
 
I thank you all again for taking the time to read this article.

My husband and I would love to do away with the challenges that autism has presented our son. But if doing so would mean that he would lose the gifts that it has given him, and the innocence and purity of heart that I believe comes with it, no deal. Uh-uh, no way. My husband is all for cure; I am all for acceptance. And I suppose my main reason is this -- I can't see how autism could be "cured" any sooner than, say, Down Syndrome. Rather than looking for a cure, they should be looking for the cause. Maybe it's just semantics that has me annoyed. ;-)

That being said, I want my son to be accepted. Not as in, "Here he is, you have to like him just as he is. You can't make fun of him when he flaps his hands or repeats what you say." No. He started a pre-K program at a public school when he turned 3 (broke my heart!) which is specifically for preschoolers with autism, to help them get ready for school. It is a wonderful program, and it is doing wonderful things with kids that might not do so great if they were left at home in the hands of loving, well-intentioned parents such as myself.

I want him to have a happy life, full of things that he enjoys. I want him to be himself; I don't intend to pressure him into being what I think society wants him to be. But I will do everything I can to help prepare him for our world, so that he can hopefully be a successful, productive, and (most of all) happy member of society.

I just find it heartbreaking that my son, who doesn't have it in his heart to be mean or laugh at someone -- who is, in fact, fascinated by people who are different from him -- has a future ahead of him where he will be subjected to just that. And there's little I can do about it, because he is who he is. And I love him for it.
 
autismmom, i agree. we should be finding the cause and spreading awareness of the complex nature of this disorder. when viola was diagnosed everybody started with the sterotypes. the "she is a genius(i hate this one,she is smart but puttin gthat kind of pressure on a child is ridiculous thanks MIL)", she is not "wired" right in the head etc. OMG! she has a disorder and she does understand more then we think she can, she just can't express it.

i also can't stand that point fingers vaccine/enviorment excuse. it MAY have an effect on the kids who may have the genetics to be prone but i really don't think that is why my child is. b/c we lived in the country and i breastfed,made my own baby food from fresh veggies(grew them or bought them from local farmers)and she was born long after the CDC ordered the thermosal out of childhood vaccines.

its very much needing acceptence not for ourselves but from other too. i can't tell you how many time ppl have a comment on viola's meltdown. for ex)this summer we attempted a trip to the water park and viola was actaully doing well waiting in a long line but then kids started screaming and whining and it wasn't the wait that was bothering her it was the tone and pitch in their voices that upset her sensory issues. so i decided to try to difuse by distrating her from it and some ladies(young college gals i say) had to make the comments of my child being a "cry-baby". i swear if i wasn't about ot catch a charge. then some parents were snotty as we walked aways and had to cut through back to the entrance. not to mention in the stores with bright lights and sound that upset her and it seems like a temper tanturm but its a meltdown. i told one wal-mart i wouldn't shop with them again b/c of an employee comment. and i haven't!

these are the things that make it harder on the parents raising a develomental "disabled"(its the term but i don't like it)child. i think once many start doing their research and opening their hearts and minds can change really happen.

and while many advocates/celebs mean well,they really send the wrong message. in our little town our doctors really believe that the only way autism occured was from vacinnes so it took longer to get diagnosed,b/c of mis-information. speech/language impaired was all we got. then isnurances wouldn't cover testing which made it hard to get the hundreds to thousands dollars for testing. thank goodness ONE doctor saw a problem and got us a refereall to a doctor that took just about any insurance,medicaid, and sliding fees. those are my two angels in getting answers. this was one time a child needed a "label" to get proper help and it took a long time for it.

i also agree, the love you get back in really the true meaning of god's unconditional love. the kids in the high school i work for are the most happy,polite, and loving kids. they don't care about cliques, name brand clothing, or the hottest new phrase, they just want to give you a hug and smile. really makes your day.

may i suggest reading "the world of the autistic child" by byrna siegal and "the autistic spectrum" by dr. lorna wing. both are a bit technical but offer some very personal insight(one of dr. wing's children has autism, ms. siegal works in the field but i don't recall if any child/relative has it). gives you a very good idea of what the real parents are dealing with. while i love the celebs are spreading the word, they can afford services while some of us are still on a waiting list for in home therapy care, and many parents have learned to do it on their own.nearly every insurance policy won't cover anything service related for autism, and many(like me) have sold homes and cars just to get on the working families state insurance b/c it will cover services for a small co-pay(which is not so small anymore :-( ) we would speak out more but we just don't have the time ;-) , but its time somebody really saw our side of the story and the side of the children/adults living with autism and doing just fine.


kassia

http://www.picturetrail.com/ldy_solana

"And do what thee wilt as long as ye harm none"

http://pic20.picturetrail.com/VOL1307/4842454/16585805/276676894.jpg
 
My son was having so much trouble with school before he was diagnosed with Aspergers syndrome in middle school. His worst class was lunch. The noise irritated him a lot. He got a note from the psychologist and was allowed to eat lunch in another room. Once he was diagnosed we understood a lot of things we used to argue over such as his constantly wanting us to turn down the TV sound and keep most of the lights off were not just to bug us.

Too mush light and sound irritates people with Aspergers.

His grades improved dramatically after his we found out about Aspergers too. He had some awsome tutors.

I feel blessed to have him just the way he is. I would never trade him for a so called "normal" kid.
 
After reading everyone's posts, I'm on the verge of tears. My son is 10 (almost 11) diagnosed with Asperger's and ADHD. He's at that stage where the kids at school are less accepting and are starting to tease more and it breaks my heart because he is such a caring, affectionate child.

Having a child like him has taught me so much. My husband and I were always the kind of people that don't want to stand out and be noticed. At first, we were embarassed by his behavior and embarassed by people looking at us. Now, I wish people (adults and children) would learn to be more accepting and less judgemental when they see someone who is "different".
 
I can't get at that article just at the moment (dinosaur dial-up) but I will be interested in reading it.

As the mom of my DS with PDD-NOS, ADD, plus numerous medical issues and my DD with ADHD, and her own other issues, I too am glad to see so much in the media currently about autism. Even if I don't agree with a particular persons viewpoint - the more who hear about it the better.

I've seen all the things the previous posters have. Having a diagnosis (label) is a two-edged sword. It does open the door to services but it also minimizes the PERSON with the diagnosis. These are living, breathing beings with opinions and preferences and incredible gifts to offer.

Oh, the meltdowns. Been there. Done that. To anyone reading this who is in a public place and sees a "normal" looking kid who is maybe "too old" to be having a tantrum. Please, just take one breath and think to yourself that this might be a kid with any number of issues, have compassion for the parent who might be ready to go 'round the bend for the last time. Could they use a hand getting their stuff to their car? Could they just use a sympathetic glance?

I wish my kids didn't have to go through the challenges that their diagnoses present. BUT I love them with every bit of passion I have just the quirky way they are.

Life won't be easy for them. I'll help them as long as I'm kicking. What can you do? Just love them. They teach me something every day.
 
Thank you for sharing this article and your thoughts.

Yesterday was the 23rd birthday of my autistic son, Brian. He is the most wonderful, pure soul I have ever had the privilege to know. He's different, and he's beautiful.

No parent would wish for a autisic child. But Brian is truly my sunshine! I would not change anything about him. I would only change the world he lives in to make things easier for him.

Thanks again!
 
>Thank you for sharing this article and your thoughts.
>
>Yesterday was the 23rd birthday of my autistic son, Brian. He
>is the most wonderful, pure soul I have ever had the privilege
>to know. He's different, and he's beautiful.
>
>No parent would wish for a autisic child. But Brian is truly
>my sunshine! I would not change anything about him. I would
>only change the world he lives in to make things easier for
>him.
>
>Thanks again!


My son is 30 yrs old and has autism. I feel the same way you do.

vikinyc
 
WOW !!! What a fantastic and great article !! My friend has a 5 year highly functioning autistic daughter and this article really shed light on her behaviors. I will pass this article to her as I know she will agree and enoy the article. Her daughter is the sweetest girl...all she wants to do is play and be tickled (and tickeled again and again!!). Always smiling or laughing and she is true sunshine !!
 
Thanks for sharing this article and for the heartfelt and moving comments from all. As a teacher trained in regular education, I appreciate hearing the different perspectives and wish to continue to learn more about this disorder, which -- based upon recent news reports -- curiously runs highest in my state.

[font face="heather" font color=brick red size=+2]~Cathy [/font face] http://us.i1.yimg.com/us.yimg.com/i/mesg/emoticons7/4.gif
"Out on the roads there is fitness and self-discovery and the persons we were destined to be." -George Sheehan
 
I'm sorry for bumping this post up again, some people probably wished it would go away but I had to add the prayer I always read to myself before every meeting with the school....

"Grant me the serenity to accept things I cannot change, the courage to change things I cannot accept and the wisdom to hide the bodies of those people I have to kill today because they piss me off...

Help me to be careful of the toes I may step on today as they may be connected to the a** that I may have to kiss tomorrow."
 
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