autism is not a disease!

Cherish - posted on 01/28/2010 ( 60 moms have responded )

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I have 3 kids w/ ASD.
My youngest son has "classic autism" or "severe autism"

It is frustrating to me when people talk about "curing" autism.
Why don't they talk about "curing" down syndrome or CP?

Kids w/ special needs are just kids.

MOST HELPFUL POSTS

Amanda - posted on 02/11/2010

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If there were a cure for Autism, I would gladly give it to my son. He is high functioning enough to realize hes different. I would love to be able to give him the opportunity to have a normal life. My son is a wonderful, bright little boy. He would be the same boy if he didn't have Autism, but happier.

Samantha - posted on 02/18/2010

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Autism is a Disorder..not a disease. There is always Hope for better treatment options and answers. I don't believe Autism Defines my son, he is who he is. I don't believe you can't put Autism and Downs in the same classification though. Downs sydrome is not just a mental disorder, it has many physical attributes associated with it. You can tell a child has Downs by physical appearence. You can not tell I child has Autism by pure visual accounts. Though Mental disorders may not have "cures" they have therapies,& medications, to manage them in order for those indivsuals to function almost normally in society.

Deborah - posted on 02/14/2010

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I have a 5 yr old son with hf autism and a 22 yr old with undiagnosed Aspbergers. Because both of my boys are so high functioning, we have only tried the "traditional" treatments for autism, i.e., therapies, behavior mods, etc., but think if they were more severe, we would have experimented more. I have an older cousin who had severe autism. He sat in the floor all day in his underwear (would rip clothes off of himself), spun a string or shoelace in front of his face, grunted and drooled. He was extremely aggressive and frequently hurt those who were trying to help him eat, clean him up, or do any other normal daily functions. He of course had no interventions whatsoever. Does the original poster believe that Danny should have been just accepted for who he was and left alone? He ended up institutionalized at the age of 30 and died there in the institution with heart problems from eating the few foods that he would accept. I believe if there were more information available when Danny was young, his mother would have tried to "cure" him. At least the "cure" folks are getting information out there about more traditional therapies when they are on tv saying they are not enough!

Sarah - posted on 02/11/2010

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Hi i am a mother of a 4 and half little girl with autism and i would just like to talk to other mothers that are dealing with autism as well

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User - posted on 04/26/2013

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agree totally with u asd runs through out my husbands side him my son mynephew and gr8 nephew all different+special in there own wayx

Samantha - posted on 04/23/2013

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I'll start by saying this, My son is 4 years old, he is your textbook case ASD his assessment was a formality, since it was known for the year we sat on the waiting list to get seen for a diagnosis what it was with his doctors and his offical diagnosis was nearly a year now at the age of 3. He is non verbal, still uses a bottle, is not potty trained and head bangs and hits his head with his fists. He is not broken he does not need to be fixed by a "cure". He gets Speech, Occupational, Behavioral therapies he has come leaps and bounds from where he was. A focus on better Funding, Therapies, Support, and Education that stretches in to their adult years and not stops at 18-19 years old would be a far better help then seeking a cure for what is a genetic based condition.

User - posted on 04/20/2013

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do u hav asd r do u care 4 any1 with asd especially a adult with many challenging behaviours

Ahlmann - posted on 04/19/2013

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People with autism or any other 'disability' for that matter are first of all here to let everyone see how we are all adapted and conditioned to function in a certain way to conform to society or life in whole. It is because we are all the same in some way that they become different from us. This distinction is stupid to begin with but that will tell you also something about how we are adapted to think.

You can only reconsider what you find important, in society, in life, how you define success, when you try to understand what's different from you, but that's scary and most of us are really glad with who we are and how we defined these things, so its safer just to stay different. Don't deal with people who don't want to understand. A waste of your good time, and focussing your good time in frustration on ignorant people sounds like a waste. You can't change them, it is not your responsibility to do so. Walk away.

But really, our society is a jungle to survive in, its amazing how adapted and conditioned we have become to it to be able to operate properly in all its complexity. We need to stop thinking that everyone is best in this little box and needs to get in here behaving like us, because there is something very unnatural about it that austistic people show out to you as bright as day.

User - posted on 03/19/2013

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yes u must remember these kids turn in2 adults i know because i live with 2 a 23 year son high function autism and 52 year old husband it gets harder 2 manage the older they r i suffer with physicial disability were i am housebond except when daughter takes me out so although why wud u want a cure thats the wat there brain was build there is loads of funding 4 children with asd but forget they become adults all disabilities any mother wud luv a cure i suffered with a blood cancer and had multi organ failure and i surely wanted cured so if i thought there was a cure 4 my son r hubby i wud look 4 it but u love u kids uncondional even though its toughxx

Cheryl - posted on 09/20/2011

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i'm with you sweetheart....we can make their life more pleasant for them and for us....but i don't look at curing it....especially when there are other children involved, we all need to have quality of life and to get on with each day as it unfolds......it doesn't mean, give up though....but we need to simply deal with it. yes, its hard, very hard, my daughter is almost 17.........but God gives me strength.

Connie - posted on 09/13/2011

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what is PCIP therapy? And to all of you out there, our children grow into adults; and autism isn't done either as you are saying; it's just different to handle the challenges of adulthood, working, money, independence, etc. Our daughter who is low IQ but high physical and outgoing functioning was only officially diagnosed with ASD when she was 22 years; the therapy will take a long time to help you find socially appropriate coping skills and avoid social meltdowns. The therapy is helping my husband and me to change our attitude about the behaviors to understand the autistic mind.

Samantha - posted on 02/19/2010

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I will tell you this.. My son was classified when first diagnosed with servere Autism or as some poeple call it "classic" autism. he did not talk, he growled and screamed the first 4 years of his life. He seemed locked within his own mind. Today he talks, has defied the odds. he seems more like a child with ADHD then Autism. We used no meds, just detoxing diets. To say there isn't a cure and they can't be fixed is an injustice to those that still justifiably have hope. Hope is what keeps us going. Autism shouldn't define your child, and without the major symptoms they would still be your child. best wishes

Cherish - posted on 02/19/2010

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I do not know if people with severe autism can ever function "normal" in socieity and more than someone who had a stroke(that affected walking) could ever "walk normal"...

YES they need therapy to better deal with the "symptoms"(like communication and self injurious behaviors)

But they do not need to be fixed

Heather - posted on 02/18/2010

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Lovely ... thank you for posting that video ... I am awaiting assessment for my son and am very emotional ... your video made me smile.

Tricia - posted on 02/14/2010

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I have a 5 yr old son who was diagnosed 2 yrs ago with PDD NOS. Do I want my son to have the best life possible? Of course. Do I bend over backwards to get him the therapy and treatments he needs? To the best of my ability. Will my son still be autistic if he loses his symptoms? ABSOLUTELY. Why? Because just like an alcoholic who hasn't had a drink in 25 yrs is still an alcoholic and fighting the addiction, not "cured"; losing the symptoms would not make him "cured" just autistic fighting the problems that cause the symptoms. Okay so maybe not the best analogy but the best I could think of. I didn't realize what I was experiencing with my son was autism but once it was pointed out to me it made sense and then thinking back there were signs of things being different for him sense he was an infant.

My simple opinion is that he was born with Autism, and that something triggered the more severe symptoms that appeared later. If I could find something that would reverse and take away the symptoms, he would still be autistic, and he would still be the special little boy that God blessed me with 5 yrs ago.

[deleted account]

I think there is a definite line between curing autism and working to help a child with autism beable to cope better as he ages. I do not want to cure my child. I love his little idiosyncracies. At the same time, I want for him to be able to have the fullest life possible, which wouldn't be possible without intervention. What annoys me is people claiming to "cure" autism with some magic bullet. Shame on them.

Annie - posted on 02/12/2010

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I am the mother of a 6 year old boy with autism, as well as two NT children. We see the neurologist on Monday, it is very challenging at times...people talk about life being different before kids, but I think of how different things were before autism entered our lives....my son receives private speech and occupational therapy, but his speech therapist is leaving, and I know that will upset him....he's not too keen on change. He also has ADHD and Sensory Integration Disorder. Trying to be strong and positive, but most of all thankful for my husband's patient and loving attitude towards our son.

Jennifer - posted on 02/12/2010

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Honestly, I have noticed that most, not all, but most folks who say quit trying to cure my child, its not a disease, are the ones that have children that can talk and who are potty trained and don't self mutilate/abuse... No one with a child that self mutialtes says don't "fix" it. My daughter can not have a normal conversation, (she is potty trained thankfully) her conversation consists of I want ______(insert 1 of about 10 items) and the oddball phrase once a year. She will be 100% dependant on the kindness and honesty of everyone around her when I am gone, and the longer I live in this world the more my innocence and trust is lost. She can't speak up to help or protect herself. She needs a "cure" or to be helped/fixed enough to where she can communicate... Like some, my child isn't just qwerky, she is disabled. I always see that movie title "Girl Interrupted" and think of my girl... and her life interrupted by her autism. And if "cured" she would still be an avid little artist and still have a beautiful singing voice(I was once asked if she sang professionally), but maybe be little safer and happier. On a side note... Funny isn't it? that she can sing, but doesn't talk. Of course, I have asked and been told many times by the medical community that speaking and singing are controlled by different parts of the brain.

SHARI - posted on 02/10/2010

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My son says his Asperger's Syndrome is not a disability it is a gift. He said it gives him his creativity and wild imagination and he wouldn't want it any other way. He is 16 and I'm so proud of him for feeling this way.

Michelle - posted on 02/09/2010

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love the video, I hear that alot also he looks normal like your other kids,Well of course, he looks normal,what should he look like ?

Angela - posted on 02/09/2010

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Tammy Z. your response just made me smile so much. I too get told my son does not look like he has autism. I love your response "what does an autistic kid look like"! I love it!! I will be responding this way the next time someone tells me this about my 8 year old son who was diagnoised at the age of 4. My son also has behavior problems.

Martha - posted on 02/06/2010

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My grandson has autism and we found a really good place in Illinois that has worked wonders with him. It's called HRI (health research institute) It's in Naperville, Il. They take hair, blood, and urine samples of the child and test all their levels and formulate vitamins to help their specific needs.We also took him off dairy products that alone helped his behavior. I didn't realize the effects certain foods has on your body until we had Cory. We didn't see an over night change but then one night my daughter called and said "mom Cory actually sat through supper without getting up and running around the table".Then she started noticing other things as well then the school asked her what she was doing because he was starting to do so much better. He was playing with other kids,something he did not do before. He isn't cured of autism but he is doing so much better and he is now in 9th grade and he makes good grades he doesn't read real well so whenever he has tests someone reads the questions to him. If anyone is interested in contacting HRI the phone number I have is 1-630-505-0300. I'm not sure if that is still their number cause they did move to a different building. But it is definitely worth trying to contact them cause Cory is like a totally different child now than what he was before we found their institute.

Cathy - posted on 02/06/2010

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I Know of a severe autistic child with out communication and major melt downs, the parents have videos of this. Today the boy is in college and there isnt any signs at all of the boy ever having a problem. I think the few cases like this the doctors should study it might give some light on autism. Amy I have done all of the things you have mentioned and yes there has been major improvements. I think she had the most improvement when we improved her ox leavels, gut, heavy metals and yeast. We are still working on her everyday we have new improvements. I hated seeing her in so much pain thats why I researched so hard. I do accept and love her the way she is but I want her to be at her best. I spoke with Temple Granted an autistic vet, when she told me how she felt when she was trapped in autism, I vowed to help my daughter get better at all cost. I do not regret any of the money I have spent or time. I love my child and all of the other children that we have helped get better. The problem is our children will always be DX with autism even if they loose all the symptoms. The dx will never be taken away as far as the doctors are concerned. My daughter was dx with asthma she has not had any symptoms for about 7 years but she still has the dx. does anyone know where the spell check is?

Sue - posted on 02/06/2010

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If the diagnosis of autism is taken away from a child does it mean they're cured?

Candice - posted on 02/06/2010

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Totally awesome video. I Wish teachers of our children could just get it like we do instead of trying to push meds and isolate our kids. Society needs to get with the program already. If my oldest daughter was cured i doubt she would be able to read into what people really mean by what they say, or be the teriffic artist that she has become. If my youngest daughter were cured that would take away my precious innocent loving child entirely. My kids are perfect just the way God delivered them. Everyone has a reason for being and ours is to love life and teach others how to love life too.

Maria - posted on 02/06/2010

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Some call it a cure.....in actually you may really talk about improvements.....bottom line it is about quality of life....and eventually living independently. I hope that is what all parents want for our children

Stephanie - posted on 02/06/2010

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I agree, my son does have a disease. However, it bugs me when Jenny McCarthy says she has "cured" her son with diet, because she is just managing it and I think it gives parents just finding out a false hope. As of now, there is no cure and all we can do is be patient and manage the symptoms the best we can. However, I agree with Shari that there is nothing wrong with wanting a cure and I do have a stong hope for one in the future. I hate to see my son struggle.

Shari - posted on 02/06/2010

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Can someone explain the difference between autism being a disease vs. a diagnosis. How can you be diagnosed with something if it isn't a disease or disorder? Are you saying cancer is just a diagnosis and not a disease? I have a child with moderate ASD, and I do wish for a cure. Do I think there is one? Not really, but I still wish for Dr's and Educators and therapists to continue their search for treatments and therapies that can improve his ability to function in this world. By saying I don't want a "cure" I feel like am kind of saying that it is okay that my son has to suffer everyday of his life because he can't communicate with me, that he will never live independently, never learn how to use the toilet by himself (he is 12 and still not potty trained). Why wouldn't I wish to not have to have him struggle? My son isn't just qwerky, he is disabled in speech, sensory integration, he is anxious, easily meltdowns. Why on Earth would I ever not want that to go away for him? I agree with an earlier post, they are just words, why not use cure? Would it really be such a bad world if they could "cure" autism? If they came out with a treatment tomorrow that guaranteed that your child would no longer have autism, are you telling me you wouldn't go get it?

Dayspring - posted on 02/06/2010

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I think there needs to be more focus on prevention, since it is obvious that something in our environment is to blame for the huge rise in ASDs. One diagnoses in 111 children, is the new number, up from 1 in 2500 just a few decades ago.

Of course we want the best treatment for our ASD kids. We also need to love and accept our ASD children for who they are, and emphasize their strengths, not just focus of the negative.

Amy - posted on 02/05/2010

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I agree but I guess it depends on what you think is the cause. Like if you think it is vaccines then you can not vaccinate which may help children you don't have already. If you think it's heavy metals then you can detox those. I have heard people say their children have done very well with heavy metal detoxing.

My personal belief is that it is triggered by many causes. My son has Lyme disease which is a very complex illness and it is common to have autism with lyme disease. Google "Lyme Induced Autism". I also believe vaccines can trigger this. Of course they contain heavy metals among other ingredients that should not be injected into humans. Then you have the preservates and pesticides in foods. I mean there can be a long list of causes.

Point being if you can keep your child away from these maybe they won't become autistic to begin with. Or if heavy metals are the problem you may find some improvements with that treatment. I am praying for improvements with my sons Aspergers with Lyme treatment!

Cathy - posted on 02/05/2010

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CF isnt it caused from mucas in the gut and lungs? The protocals are the same for CF and autism if you are doing natural meds.

Rebekah - posted on 02/05/2010

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I can see where you are coming from and we all have many different thoughts about living and dealing with autism. For me my child also has Cystic Fibrosis and asthma etc etc as well as autism. His cystic fibrosis is classed as a terminal disease. I decided that autism wasnt so bad, I dont want to spend his whole life trying to cure him, which it might work or it might not, but what I am trying to say is that his cystic fibrosis forced me to make peace with the autism, and now I have done that I dont have this desperate need to cure him of it.

That doesnt mean thats the right way or the wrong approach, if he didnt have cystic fibrosis as well maybe I would be looking at every avenue possible who knows??

Cathy - posted on 02/05/2010

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Your right autism is not a disease, it is neurological also other things. My daughter was dx with severe classical autism, moderate CP, legally blind and death, severe asthma ect.... MAJOR BEHAVIORS!!!! She also had brain surgery in the center of her brain at 2 years old. I read through every reply and was amazed at the responses. I never thought the way the moms here think. I think there must be something wrong with me LOL. My daughter is 14 and has lost most dxs. She still has problems with speech and is slowin other areas, Her dx now are moderate autism all others are gone. Her behaviors are perfect she is very well behavied. With my experance I have seen some of the moderate to high f children completely recovered. So it is possible. This is not intended to get anyones hopes up, these are true facts that I have witnessed. I am so blessed to have an autistic child. Sorry about the mispelled words I am not a good speller

Veronica - posted on 02/05/2010

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I have a 15 year old son with Asperger's. It has taken years for me to persuade my mother that he actually has it, and now she's continually saying 'He's growing out of it'. I can't convince her that it's a lifelong neurological condition and that you don't 'grow out of it', you just learn ways to adapt to it. It drives me nuts (but then my mother is very good at doing that anyway...)

Julianne(Julie) - posted on 02/04/2010

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I agree autism is not a disease. this is not something you catch from someone else. its a nuerological disorder. I have son with autism who is now almost 22 years old. all we can do is accept and learn to cope with whatever behaviors come our way as a result of this disorder. I think people are desperate and will grasp on to whatever they think will help thier child cope better. each child is different and what may work for one might not work for another. what they need to do is research what causes autism so there can be better treatments for it and better ways of coping with it. all there has been so far is theories and none have been proven so far. live and learn and love your child.

Amy - posted on 02/04/2010

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Autism is definitely part of who they are. A "cure" would be nice but, there are none so I say acceptance of people's differences is key

Rebekah - posted on 02/04/2010

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I totally agree with you, I have a son who has Cystic Fibrosis and autism and people are always asking me what stuff am I doing to cure the autism??
I consider autism to be a part of who he is and I want to make the world a more understandable place for him, I am only interested in helping him make more sense of the world he lives in as opposed to curing his autism. I recently saw Jenni McCarthy the american star talk about curing her son of autism and that it can be done she thought she was helping all parents of autistic children worldwide but it didnt feel like that for me. I agree they are just kids and I think instead of trying to change them a little bit more emphasis on understanding them and us making some allowances would make a huge difference! Rebekah

Pamela - posted on 02/04/2010

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About 5 years ago, I went to an Autism Conference and I learned many valuable things including this: When it is hard to accept Autism and all that comes with it - we tend to look for the cure or "the miracle". When we do that and we are focused on that goal - we miss everything in between. We miss the every day miracles. I thought a lot about that and realized that Autism was part of our lives and we just had to have a healthier outlook - whatever it would be. I have since seen my son in a completely different light and instead of seeing the "autism" - I see him. Thank heavens for the beautiful information I got that day. However - even though my husband and I see it this way - many people do not including my husbands family. It drives me crazy because there are certain people that are always looking and listening for a cure. At their request - we have taken them to a few doctors that 'claim' that they will change his life for the better - greatly! I have amused them but I strongly oppose to this stuff! We have tried to explain our view point to them - over and over. I can't even begin to tell you things they have said or wanted us to try. We are happy to give our son the BEST quality of life we can possibly give him and love him unconditionaly. All we can do is our best. We are lucky to have our special children because they will teach us what life is really about. :)

Andrea - posted on 02/04/2010

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that was such a touching video. i have a six year old daughter with p.d.d.n.o.s. so i know how you feel. i think we are the blessed ones....to have such amazing, strong, special kids. may god bless you and your beautiful children.

Trudy - posted on 02/04/2010

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we are totally in agreement. not many people know about autism until someone they know is giving the diagnosis. i'm sorry to admit i was one of those people. my son Tristan was first thought to have autism when he was 2, but was too under developed to be diagnosed. now at the age of 4 he has been officially diagnosed and is doing very well in school with all the help he gets. he is a wonderful little boy who i wouldn't want to be any other way.

Debby - posted on 02/04/2010

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I am so with you on that, why can't people just accept them the way they are instead of trying to fix them? Real autism can't be cured, unlike food and other allergies. Just because a few children who seem to have autism are "cured" by a special diet doesn't mean that's the magic answer. My mother-in-law is constantly trying to talk me into expensive experimental treatments that never work, so I am done with that. My son is beautiful just the way he is.

Ann - posted on 02/03/2010

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I agree it can't be cured. Perhaps someday it can be prevented. But I've met some kids who had early interventions- diet, et al, and they improved remarkably. My own son did not respond so well, but a little. I'm still of the mind that as parents we should try everything to improve the quality of our children's lives. I'm sure not sorry that I jumped through the hoops! Just keep on jumping.

Christine - posted on 02/03/2010

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my son has autisum and your so right its not a disease it is a diagnosis and as I have learnt by teaching my own son at home alot of one to one has helped him to deal with things ive always taught him how to get round things I think hes brilliant and is the most loving child anyone could wish for im so proud of him and so is his sister xx

Wanda - posted on 02/02/2010

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I have a 30 yr old daughter who has never received a "diagnosis". However, once we got her into a program @ the ARC, her behavior specialist noted that her actions were most comparable to autism. Note that Leah is non-verbal. She communicates by eye contact, pointing, actions, but no words. I agree with you 100% autism is not a disease. You just have to deal. Take each day as it comes because you never know what it will bring. Some days are good with no "episodes"; others are terrible. But you just have to learn to deal as best you can. What works for one family does not always work for another. This is the same for any family whether there are special needs or not. I just wish that 30years ago, the information and attention had been available to all of us with autistic children. At least today the awareness of autism should make it a little less difficult to deal with. God bless all of us Moms whether our children have special needs or not. As my oldest daughter has said: "Normal is overrated."

[deleted account]

YES and YES!!! I also have 3 children with ASD . . I see a lot of their aspie quirks as strengths . . I once read a book that pointed out that 'we all carry aspie tools in our everyday bag' . . we are all ASD - it's just to what degree!!!!

Mary - posted on 02/02/2010

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I think that there is a lot of misinformation out there. people are under the impression that Autism can be cure by the right diet or medication. They are told that these children need a nutrient or chimical and thats why they are the way they are. Those things might help but they do not cure ! ! !

Jennifer - posted on 02/02/2010

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The people are who talk about "curing" autism are not trying to be hurtful. They want better treatments and better support from the medical,educational and insurance communities and you can't deny that better understanding and better help isn't needed. Its just a word to try to get people motivated, we shouldn't get hung up on phraseology. They only want to make lives better.

Tammy - posted on 01/31/2010

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That is so true. My son is ASD as well and people say to me well he doesnt look autistic and my reaction is to them so what does an autistic child look like and they are totally speechless. I to have heard the ridiculaous notion that u can cure autism my god dont they think if that were the case we would be doin that. They are beautiful kids that are just a little special thats all......

Ann - posted on 01/31/2010

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Autism cannot be cured, in my opinion. It is a neurological disorder that can be managed with therapy, diet, patience and love. My son is 6 and was diagnosed 2 1/2 yrs ago. He has been in therapy since the day he was diagnosed and is doing so amazing! He was diagnosed as Mild to Moderate Autism with Behavior Issues. He is in a regular kindergarten class with a para most of the day. He is learning and loving it! We were doing therapy once a week, now we are every two weeks. We did the PCIT therapy and that changed our family!! Look it up if you have not heard of it. It is a difficult therapy to do but worth it. Everyday is a struggle for all of us. Most days there are only a few "meltdowns". Other days I wish I could crawl in a hole and scream until I can't scream anymore. Simple little things are giant mountains, one day, the next they are no problem. My son is very talkative with a very vivid imagination. He cracks my husband and I up with all his dreams and thoughts. I would never want to "cure" my child because he is who god wanted him to be and I love him and would do anything for him!

Kathryn - posted on 01/31/2010

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Autism is a neurological disorder. I would love insurance to consider it a medical disorder because then they would have to pay for all the stuff. But your right. I have a 8 year old son with ASD. He is consider moderate. He was diagnosed 6 years ago and I don't want to cure him. He is his own person. If you take away the key factor in his life, how they heck can he survive? I love my son just the way God gave him to us, I have no intention of "curing" him because someone thinks I should.

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