posted over 2 years ago by A MyAutismTeam User

Good question. They definitely have raised awareness and are in the fight to get legislation changed, however, for being such a large organization, I wish they used… read more

posted over 2 years ago

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I am the same way... I got a safety box from them, which has helped, they are full of resources like the 100 day kit? but quite afew are saying terrible things about… read more

posted over 2 years ago

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I think every organization has their niche. Autism Speaks is very political and the 'squeaky wheel gets the grease'. In my view, any group that honestly sets out to… read more

posted over 2 years ago

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It's so/so; I'm sick of all this money being poured into research with nothing to show for it in terms of real life applications for families dealing with… read more

posted over 2 years ago

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Also, some of their "awareness" has been quite hurtful to my son, who is trying to accept himself and embrace his autistic personality in a positive way. I wish there… read more

posted over 2 years ago

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Autism Speaks has worked to improve its image, but most HFA adults are hostile to them. They do NOT want to include autistics in decision-making, they were founded by… read more

posted over 2 years ago

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Oh, and here's the full "Autism Everyday" video.
http://www.youtube.com/watch?v=vjEC0kw_nvA

posted over 2 years ago

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posted over 2 years ago

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This is very interesting! I am learning so much!

posted over 2 years ago

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Autism Speaks is extremely bad. They would rather try to find a cure for autism rather than allow society to change and mature to accept people on the spectrum. They… read more

posted over 2 years ago

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I have heard autism speaks is terrible. I personally think they are just an outlet for the government to control what parents think about autism and how it is caused… read more

posted over 2 years ago

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@KristenMunyon - Actually, Obama has autistics on his advisory board for health issues.

Ari Ne'eman being one ---

http://autisticadvocacy.org/

posted over 2 years ago

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I meant more or less the CDC and mainstream media the the president

posted over 2 years ago

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They are just like the susan g. komen. We need the right people in there! Often in the military we change duty stations or units because the situations are all about… read more

posted over 2 years ago

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@KristenMunyon: I apologize for saying this, but in my point of view, autism is not a disease. It is a genetic condition like the many thousands of others which are… read more

posted over 2 years ago

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I have a friend that wants to go to south america and get stem cell treatment. (her idea of a cure) I argued with the fact that it is not fda approved or the mere fact… read more

posted over 2 years ago

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I know of many families whose children are autistic and those children are now functioning to a level of what is considered "normal" in today's society. All of this… read more

posted over 2 years ago

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@KristenMunyon, I simply have to disagree with you as to causes and treatment... I believe it only offers false hope. Those children you know who are functioning as… read more

posted over 2 years ago

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Im not saying they are cured. I know there is no cure. But I do know that the choices their parents made gave them the best chance to live as "normal" as possible and… read more

posted over 2 years ago

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Kristen I see your point and agree with your conclusion. I have different experiences with genetics and I think it is a combination of both... I was the one that… read more

posted over 2 years ago

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The treatments that work are not dependent on autism being seen as a "disease" or not. They work because they bring the feedback, positive and negative, that most… read more

posted over 2 years ago

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Bad, from what I gather, misused funds.

posted over 2 years ago

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Love it Sally! I know... well I don't know what is like, but my daughter has dislexia. The opometrist said that even with vision therapy she will still suffer from the… read more

posted over 2 years ago

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I'm tired of being told I have a disease or that I can be cured. THERE IS NOTHING WRONG WITH ME. Back off.

posted over 2 years ago

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@AspieCarrie: Take it easy! I'm on your side!

posted over 2 years ago

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I think it might be an expression... Carrie baby? I am sorry? if it was us or autism speaks? I think it was...them! I was just trying to get amazing feedback... Not to… read more

posted over 2 years ago

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Ok, I must have misunderstood something someone said. I apologize. It's been an ugly week for me and communication is not working in my favor. I'm sorry. :-/

posted over 2 years ago

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I understand. Coping with being on the spectrum can be very hard even at the best of times.

posted over 2 years ago

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Indeed. Most of the time, I'm ok, but not this week.

posted over 2 years ago

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For @AspieCarrie and @SallyRistaAnderson: What are your suggestions for my Aspiedaughter who is mentally ill? I am SO thankful neither of you are suffering with a… read more

posted over 2 years ago

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@MercyGirl, I understand. I inherited depression from both my parents, but I also earned quite of bit of PTSD from being abused both by them; and also from being… read more

posted over 2 years ago

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@Mercygirl ...My 15 year old has severe anxiety and ADHD which often comes with Autism, which affects functions of the brain, mental illnes is common and often what… read more

posted over 2 years ago

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Push for help. That's all any of us do. DEMAND that she be treated for her issues.

posted over 2 years ago

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Thank you so much for your comments everyone. I really appreciate them. @SallyRistaAnderson, I addressed you and AspieCarrie because you both mentioned that Asperger's… read more

posted about 2 years ago

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I do not believe asd is a mentall illness. I believe it is a different operating system. That said, mental illness can definitely be conorbid with any type of… read more

posted about 2 years ago

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Generally, when things get sorted out, it isn't the autism that is the most stressful and worrying, but comorbid mental illness, learning disability, and physical… read more

posted about 2 years ago

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MichelleSarabia if you could highlight your second paragraph I would! It is woderful! Everyone else getting upset, please don't... We are all in for the same cause and… read more

posted about 2 years ago

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@mercygirl: I think your only hope might be to apply for political asylum in Germany. I'm not kidding. They have fully socialized medicine and they would consider your… read more

posted about 2 years ago

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Thank you all so very much for the insightful and helpful information. I am not a fan one way or the other of Autism Speaks; they haven't been that much help to me in… read more

posted about 2 years ago

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@Aule, after reading your post, I read your story and I am so overcome with your fourthright honesty in expressing your life and advice to parents, I want to say… read more

posted about 2 years ago

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@mercygirl, I understand. But the exercise of compassion, just as should be the exercise of all other things, is local. Look to your girl first before trying to change… read more

posted about 2 years ago

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American culture can be brutal. It's hard for my 20 yr old NT son with a personality as big as the Grand Canyon, let alone my daughter. She gets along much better with… read more

posted about 2 years ago

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Thank you very much for the link. I am so grateful to you for your help. I read your MAT Story and am in awe of how well you have handled your son's upbrining. I… read more

posted about 2 years ago

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Finding amazing people to help your child is about never giving up the search. There truly are these wonderful needles in the haystack of society.

Keep asking around,… read more

posted about 2 years ago

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@mercygirl. I believe you said your daughter is 23 now? That's the same age when I crashed out of my first attempt at a doctorate. When the placement director at the… read more

posted about 2 years ago

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@Mercygirl, @MichelleSarabia: sometimes an angel or two falls into each person's life to turn that life around. Sometimes you only realize it after the fact. Other… read more

posted about 2 years ago

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So true, MichelleSarabia! Thank you for your encouragement. =]

posted about 2 years ago

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Thank you for your helpful advice, Aule. She has not had any OT. She did have an IEP every three years for extended time testing since 1st grade, tutoring and… read more

posted about 2 years ago

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Great information, @SallyRistaAnderson! Thank you! Where does a person go to get this type of testing done; OT, the psychologist/ psychiatrist? The link states that… read more

posted about 2 years ago

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@Mercy girl have you talke to your local Autism Society? They have people that do help you go through the process... Like I said before it was through mental health… read more

posted about 2 years ago

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I separate ASD as a Social Cognition Deficite/ Condition separtate from mental illness. I hope I didn't seem to imply they were the same. I guess another way to say it… read more

posted about 2 years ago

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Sometimes I wonder if the people who consider autism to be a mental illness ever realise that correlation is not at all the same as causation.

posted about 2 years ago

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@Mercygirl...My son does says a lot of these things also and bets bullied when he is playing on-line games. The key is to identify behavior and triggers that behavior… read more

posted about 2 years ago

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Thank you thank you ladies..., no way will I say goodbye to either of you. I'm sure it sounds like quite a pity-party I'm having. Thank you for the reality check,… read more

posted about 2 years ago

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@mercygirl: don't thank me, thank my Stat 314 instructor! I was taking it as a refresher course for my second and final attempt at doctorate in CS during 2008. He… read more

posted about 2 years ago

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@mercygirl: [ My natural tendency to want someone to "do something" (I guess it's part of my DNA being an RN) ]

I thought being an RN that would have been RNA, not DNA… read more

posted about 2 years ago

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@LucyTBourque: One thing I found actually helpful for learning both physical and emotional self-control was karate. I had taken the Okinawan style back in the day, on… read more

posted about 2 years ago

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@LucyTBourque: Another alternative for learning to displace stimming would be Tai Chi.

posted about 2 years ago

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@Aule, Hahahahahaaa!! Too funny. Thank you for the smile. I needed it!

posted about 2 years ago

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I was horribly bullied all through elementary and middle school. Finally, my mother put me in karate. I had a very patient sensei for a few years... and was able to… read more

posted about 2 years ago

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I am soooo loving this! It is so difficult to explain and you guys GET IT! Ian is so introvertive it is unreal... Ian witnessed a robery and he was always the police… read more

posted about 2 years ago

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@LucyTBourque - Your child's occupational therapists should be breaking these tasks down into tiny steps, and using those steps to find out where he is being… read more

posted about 2 years ago

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@LucyTBourque: Seems your son is pointing his own way to equestrian activities. At least a horse is a friend who won't judge him. Unless you are trying to cover… read more

posted about 2 years ago

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We are military and not officer and my husband deploys a lot... I am a disabled vet so insurance is good but with 3 kids and 2 on spectrum its crazy! lol... my middle… read more

posted about 2 years ago

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@LucyTBourque: Philadelphia!?!? That's very close to where I was raised. My grampa started out as a motorcycle cop in the Philly police department and then worked his… read more

posted about 2 years ago

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We live in Fort Bragg NC... I went ot Philli for an Iceskating competition we had... That is a good idea though! Thanks! "Staplehand" will be in my vocabulary now...

posted about 2 years ago

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@KristenMunyon Is Autism a Disease? I thought it was a disorder but would like clarification as I had not heard this before?

posted about 2 years ago

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She said and I quote... "others treating it as a "disease"" she did say it was a disorter... Wording may be confusing at times...

posted about 2 years ago

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Autism is niether a disease nor a disorder, it is a condition.

posted about 2 years ago

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@SallyRistaAnderson, if Autistic people are ever going to find acceptance socially as adults, then we need to call it a condition. Do we call Deafness a disease or a… read more

posted about 2 years ago

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I don't consider Autism to be a meal ticket. Ever. An apology would be nice.

posted about 2 years ago

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Consider this also. I am on SSDI for inherited depression. Not in a million years would I have considered applying for it on the grounds of Autism.

posted about 2 years ago

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Well I agree with it being a condition, which it could be verbal expression maybe even a way of life. You will be fine until you need something? I need ABA for my… read more

posted about 2 years ago

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There are a variety of conditions, disorders, and diseases which are on the "labels" list for services like SSI. They are judged by how much they disable a person's… read more

posted about 2 years ago

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BAD. They do NOTHING for us. All they want is from us is to donate, donate, donate. I send a note back to them saying, "Once you begin to help us, then we will help… read more

posted over 1 year ago

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I am 68 years old, adopting my 6-year-old great niece who has autism and is hyperactive. Patience has never been my long suit, but I am finding that I must now, at… read more

posted over 1 year ago

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go to I EP slowly with him and go to independent evaluation u got medicaid also be constant with the education early please god bless u to all u amen keep touch keep… read more

posted over 1 year ago

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My 6 yr old son, diagnosed PDD-NOS at age 3, is currently reading at above 3rd grade level! Most kids, mine included, when young, care more for the TV than books (at… read more

posted over 1 year ago

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