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Just (Reply to this comment)
by susiewho
got involved with Piece of the Puzzle a local Autism group here in S. Fl.
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Mar 31 '10
4:35 am PDT
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Autism (Reply to this comment)
by vmadwop1
Thanks for this article. It brings hope to those of us who see the effects of Autism. My grandson is 4 years old and has austim. We try and read everything we can in trying to understand. Merry Christmas.
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Dec 18 '09
3:26 pm PST
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Wonderful review! :) (Reply to this comment)
by kbolton72
Hi there! I am also a mom to a child who is on the autism spectrum ~ my youngest, Caleb has PDD-NOS/OCD and I have found so much information on AutismSpeaks.org, we relocated to FL and it is hard to find a good DR, even at the Dan Marino Center (of all places).
We will be taking him to a DAN Dr. as well as others, and I certainly hope that the resources for families and information keeps growing on the site. What did we all do before they came along?
Again, love the review, I don't know how I missed it the first time! Blessings!
Kimmie
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Aug 25 '09
4:47 am PDT
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This might help to stop further autism cases . . . (Reply to this comment)
by sojournseeker
I have been reviewing for almost a year and a half now and have learned ALOT from many positive thinkers and fantastic writers. One of whom has caught my utmost attention on an area I have been deeply involved in is children and what they are eating and drinking is affecting them. This reviewer, mongkut, talks about the dangers of a food dye additive known as Red #40 and Yellow #5 and #6, being linked to hyperactivity and IQ deficit in infants and toddlers.
I am doing some more research and since receiving my baccalaureate in Child Psychology specializing in development both abnormal and normal psychological cognitive development, I am trying to make a very intersting connection. What if 'autism' is linked specifically to these 'so-called good for you approved by FDA' food color enhancement chemicals ?
Wouldn't we warn every parent as women and men TRULY CONCERNED with our children and future childrens welfare ? I would really like to keep in touch with you as I believe we could really educate and make autism soon be 'a thing of the past' . . . What do you think ?
Please see the post I made at our Epi Lounge today of mongkut's review on the dangers of snack foods containing this destructive additive really not necessary to have the consumer buy because of eye-appeal if it is linked to terrible breakdowns in toddlers developing psyche's and cognitive functions.
http://www.epinions.com/msg/show_~threads/cat_id_~122/id_~24248/forum_id_~451
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Jul 22 '09
12:38 pm PDT
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Thanks (Reply to this comment)
by Suzer
for submitting this excellent article drawing attention to autism.
While I haven't been personally affected by autism there is a family member (by marriage) who most likely has Aspergers (an adult)and I have friends and neighbors who are affected.
I don't understand members of this site who have their own challenges with autism criticizing your article/commentary, or the group you personally support.
We all have different life experiences, and for you this group is of great import. If others prefer another group, and feel it has more value, fine, but why criticize your views, your perspective, and particularly, why comment on here? Why not just send you an email and express their opinions/their experiences.
In my opinion, drawing attention to any valuable charity for something as critical as autism should be commended not critiqued.
To each his own. Who is to say who, what, how autism will be cured. Let's provide support any way we can.
Suz
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Apr 24 '09
9:32 pm PDT
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Re: clarification so there is no misunderstanding! (Reply to this comment)
by shantel575
Thank you Megan :)
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Mar 18 '09
2:18 pm PDT
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clarification so there is no misunderstanding! (Reply to this comment)
by mql1208
by watchdog groups, I meant Charity Navigator, BBB etc...
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Mar 18 '09
1:03 pm PDT
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As the mother (Reply to this comment)
by mql1208
of two autistic children, I think your personal plea for the organziation speaks more to me than any watchdog group reporting "facts". Your experience with Autism Speaks has obviously been positive enough for you to recommend it as one of Epinions charities of choice. (I'm glad I don't have to choose!!) Thanks for bringing Autism Speaks to the community's attention because awareness is such an effective tool.
Good luck with the write-off,
Megan
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Mar 18 '09
12:29 pm PDT
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Re: One more thing (Reply to this comment)
by shantel575
Bonnie, while I appreciate the information about the organization, I do not find it appropriate for you to get this personal in my comment section when you could've emailed me directly concerning your personal views. Especially when I have emailed you more than once in the last year to ask for your input regarding specific issues with raising 2 autistic boys, and you never respond to any of my emails (which is the only reason I will respond to you here as well). Yet you happen to find your way into my comments and bombard me with your personal views (which I don't agree with totally)? I'm sorry but that just is not appropriate.
Please don't insinuate that I haven't "accepted autism", "don't help my children to thrive" that I'm "clueless" or that because I choose to have my children participate in different forms of therapy that we are "missing out on life as a family". And when a diagnosis is received, I don't find it at all unusual for parents to feel like it's "the end of the world" and displaying emotion (or "drama" as you put it) for a period of time. If you are above these emotions and feelings that's fine, but don't put down others who may struggle with it for a time. This is not an easy thing to hear about your child, and the first days of dealing with the diagnosis can be very difficult. Please don't come on here and minimize this and make other parents feel sub-par because they have these feelings and emotions. Is it so wrong to have wanted the best for a child in life? I don't think it is. ANY parent who finds out their child won't live a "normal" or "full" life will likely go through a time of disappointment/guilt/mourning/depression. Any EXPERT will tell you that this is normal. I find it insulting to be told that it's just being "dramatic". Frankly, it's not really any of your business how other people handle this sort of news. Good for you if you handled it like a super hero. But don't belittle others who may handle it differently.
And yes, I would love nothing more in my lifetime than for A) a cure to be found B) a cause(s) to be discovered and C) ways of prevention to be discovered. I do "accept" my son's conditions but if given the opportunity to rid them of it, would I do it? Of course I would. It would improve their quality of life and I would never deprive them of that because of some sick sense of pride. Being against autism does NOT mean I am against my children! I don't know of anyone on the planet that would be FOR AUTISM itself. That's like being FOR Alzheimers or FOR Cancer.... I'm sorry but that is just absurd. When you love someone, you want them to have the best life possible, and that would never include wanting them to have a condition that will cause many struggles in life. Some of the things you say really concern me to be honest.
I could go on but hopefully I've gotten my point across.
Shantel
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Mar 16 '09
12:42 pm PDT
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Interesting Links about Autism Speaks (Reply to this comment)
by marytara
Hopefully this works since it is from my smartphone.
I just wanted to follow up to explain my previous comment. It is not an attack on you personally. I do believe I can relate to what you go through and I know that your motives for nominating autism speaks are completely pure. I really hesitated on posting my comment because I know there will be fallout from it, but I feel that all sides of Autism speaks need to be shared.
Below is a link to an article about Autism Speaks written by Katie Wright - the founder's daughter and mother of a child with autism.
http://www.ageofautism.com/2008/01/by-katie-wright.html
This is my "favorite" part:
It appears as if AS grants are selected less as a result of the significance of a research proposal but more as a consequence of the financial resources of academic institutions to put forth in producing most professional and conservative grant applications. Instead of funding impactful, breakthrough science, millions of dollars are spent on researching the same safe subjects over and over again. Numerous exciting, innovative and progressive biomedical grants on GI disease, methylation pathways and toxicity, vaccinated and unvaccinated siblings have been repeatedly rejected due to ignorance and fear. It is past time for the scientific advisory boards to think outside the box and pursue the bold research parents want and our children desperately need.
In a nutshell - Autism speaks is afraid to rock the boat because they are too busy getting rich on the shore.
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Mar 15 '09
6:09 pm PDT
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autism speaks (but not for me) (Reply to this comment)
by marytara
As you know I am a mother of a child with autism too. We even participated just this past week in genetic research that is going on. I used to be a big fan of autism speaks. I did the annual walks, raised thousands of dollars, given. I've seen the leaders make 6figure incomes and them support studies with big pharma. I've seen the leaders of the organization go on tv with sob stories about how terrible autism is. These same founders of the organization are grandparents who don't even stand by their daughter's beliefs and treatment of her autistic child (grandchild).meanwhile they fly around in corporate jets.I am all for autism research but not corrupt research headed up by organizations with a vested interest. Sadly, googling "autism speaks" really will unravel quite a tangled web. It has left me feeling quite disappointed and yes feeling bitter knowing I supported them over the years. My support for the charity now is that they are for autism/autism awareness/ research - I am for that but I am no longer their big fan. I don't feel they "speak" for my child. I feel they speak for the dollar bill only.
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Mar 15 '09
5:29 pm PDT
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One more thing (Reply to this comment)
by bonniesayers
I think the keywords you use here is the "fight against autism". See people are either trying to cure autism, fight against it or say it is due to vaccines.
Seems many have yet to accept autism and help their children thrive. In many autism groups I am in there are parents with kids in high school now clueless what to do since they were so busy doing all these therapies, supplements, HBOT, and guess what the kid is still autistic and they missed out on living as a family.
Accepting autism and embracing it is a crucial step in autism awareness.
My two sons are on opposite ends of the spectrum, one turns 14 next Sunday and both are in middle school, one homeschooling, and in middle of puberty, yet life goes on and there is no drama or feeling like it is the end of the world.
We are not against autism. In fact I put together an autism twitter day in Dec and it was a big hit with the topic being discussing autism and those on the spectrum. My next event is April 3rd with a gluten free twitter party and panel members discussing lifestyle changes, celiac, food allergies and the epi pen. Nothing negative on life with autism, but helping people adapt their lives and mentality so that acceptance and integration are successful.
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Mar 15 '09
4:59 pm PDT
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Autism Speaks sucks (Reply to this comment)
by bonniesayers
The Autism Society of America has been around for over 40 years, Autism Speaks only a few but because they roll into every town with celebs they get noticed first.
Do some google searches on them and see how they have treated those on the spectrum and how their video autism every day was so melodramatic having Mothers talk about how they wanted to kill themselves when their child was dx.
That is not autism awareness at all, that is a ploy to line their pockets with money. They also take away from the communities and interfere with local and state legislation. Check out what they did in Pittsburgh and read what autism link wrote about them and even their own daughter.
They put on their events right before a local one so the businesses think they are helping the community and then they do not donate to the local ASA chapters since AS came to town first.
I have written down at the forum of my autism site what Suzanne Wright said about autism, she was downright insulting to my kids and I would not give the company a penny.
ASA is the autism company to speak highly about, they use real autistic people on their board and they do annual conferences every yr.
Autism Speaks does not speak for this autismfamily.
http://autismspectrumdisorders.bellaonline.com
http://autismfamiily.blogspot.com
www.twitter.com/autismfamily
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Mar 15 '09
4:53 pm PDT
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Re: Re: gmta (Reply to this comment)
by KMINER
I can't help but come back to this posting after thinking about it a lot today ....
I know there are many, many, many worthy causes, and my heart always seems to have a special place for children charities ...
that being said, in knowing your two boys, and the opportunities afforded to them due to a charity like this, I hope that people realize what a true difference donating to a place like this can make in a family's life.
Kimm
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Mar 07 '09
4:05 pm PST
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I applaud your work and getting the ... (Reply to this comment)
by popsrocks
...word out in reference to autism. Awareness is the first tool in learning more about it. I, and many others, have been blessed not to have autism in our families. That doesn't mean we should not be aware ourselves.
Well done.
pops
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Mar 07 '09
7:57 am PST
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Re: Thank you. (Reply to this comment)
by shantel575
Hi Mark... I didn't realize that you too were affected so personally by autism. Our "group" continues to grow before my eyes! Thank you for all the ways you contribute, whether it be through charitable giving or through writing reviews that help others dealing with this disorder.
Shantel
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Mar 07 '09
7:19 am PST
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Thank you. (Reply to this comment)
by shopaholic_man
As the father of a child with Asperger's Syndrome, I think this is a very good choice. I have to remember that April is Autism Awareness month, and write some more book reviews! (I've written quite a few that deal with ADD and Aspergers).
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Mar 07 '09
7:17 am PST
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Re: Do donors get any real bang for their bucks??? (Reply to this comment)
by shantel575
Hi again mrkstvns, I did a bit more digging into the issue you raised and I was pleased to find that 1) their financial reports are listed in detail on their website 2) the BBB does approve this charity site and 3) the most recent data posted indicates that the percentages of funds spent are as follows: Programs: 75% Fund Raising: 19% Administrative: 6%
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Mar 07 '09
7:12 am PST
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Re: ☼ (Reply to this comment)
by shantel575
Thank you for the support Liz! Every little bit counts!
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Mar 07 '09
7:00 am PST
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Re: gmta (Reply to this comment)
by shantel575
Hi Kimm :) I was surprised that I was the first to write about an autism related charity... I'm sure I won't be the last though :)
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Mar 07 '09
7:00 am PST
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☼ (Reply to this comment)
by brendan2
One of my very close family members is autistic, and I hope and pray every day that a cure or effective treatment will be found. I hope this organization is chosen for the write-off, but if not, I am still going to contribute something next month.
~Liz
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Mar 06 '09
7:07 pm PST
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gmta (Reply to this comment)
by KMINER
already was thinking .... ;)
Kimm
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Mar 06 '09
5:30 pm PST
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Re: Do donors get any real bang for their bucks??? (Reply to this comment)
by shantel575
All of their financial reports are published right on their website :) It is actually quite detailed! From what I gather they have a very positive reputation. Thanks for the comment.
Shantel
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Mar 06 '09
5:26 pm PST
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Re: With the number of member (Reply to this comment)
by shantel575
Thanks John, I sure hope so! There are definitely alot of us here on Epinions who are affected, myself included.
Shantel
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Mar 06 '09
5:17 pm PST
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Do donors get any real bang for their bucks??? (Reply to this comment)
by mrkstvns
It sounds like their work could sure benefit a lot of people. I wonder though, do they make good use of their money??
Too many charities these days are either shams or just plain badly managed, wasting most donor money on executive salaries and marketing.
Is this charity recognized by authorities like the BBB Charity program? Do they publicize their financial data? And most important of all, what percentage of their total budget really goes into research programs???
It would be a real shame to have Epinions people wasting their donation on bad charities when there's so much opportunity to make a true difference.
Regards,
M
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Mar 06 '09
5:17 pm PST
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With the number of member (Reply to this comment)
by coldsteel7
here at Epinions who are personally affected by Autism, I think this worthy cause will likely be among the three chosen for April. Thanks for sharing.
John
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Mar 06 '09
4:52 pm PST
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