A Modern Day Fairy Tale: Supporting Autism {The Great Divide}

Tuesday, April 8, 2014

Supporting Autism {The Great Divide}

Please note: I write this post not to say that I am right, or that there is a right or wrong organization to support. I am merely writing because I know there are people who question the differences and I wanted to share my own personal experiences and viewpoints on the subject. While I may have my reasoning for supporting one over the other, we have at one time supported each organization and I truly believe that at the end of the day, choosing to support autism in ANY way is a GOOD THING!

My husband was recently asked why there was a competition when it came to autism organizations. Autism Speaks, TACA, ASA... All are supposed to be supporting autism so there should be no conflict, right? Unfortunately it's not that simple. It all starts with the many clashing views within the autism community itself. There are those who believe that autism is purely genetic and there are those who believe there are environmental triggers (to include vaccines) that play a role. There are those who seek a cure and those who simply ask for understanding and accepting. There are those who want to find a specific genetic marker that will allow prenatal testing and those who do not want such a marker to lead to terminated pregnancies as is seen with Down syndrome. There are those who follow a strict gfcf diet and those who do not. There are those who see autism as merely a hardship and those who see that there are great things that go right along with those hardships. Should it be this way? Absolutely not, we should all be working together to stand for out children young and old and all others affected by autism. After all, we are all ultimately trying to do what we feel is best for our children- we just have different viewpoints on exactly what that means. Seeing where the divide is within the community, we can now take a look at three of the larger autism organizations and how they fit into all of this.

First up, the big one- Autism Speaks. They're everywhere. Billboards, Toys R Us, chocolate bunnies- they've got advertising down. For this reason, they truly have done a LOT for bringing autism into focus and raising awareness. If the growing numbers weren't making autism a household name, Autism Speaks certainly has. Aside from all of these advertisements, their focus tends to be in research. This is where the largest portions of their money is spent. Many individuals with autism and their families (myself included) feel that AS uses scare tactics and create a stigma of fear of autism going very much against the idea of embracing individuals with autism for the gifts they possess but instead seeing only the disability. You can read more about my thoughts on that here.

TACA (Talk About Curing Autism) tends to focus more on bio-medical treatments. Many children on the spectrum also have gut issues and are actually physically ill. For those individuals a gluten casein free diet has been shown to be not only effective in taking care of the physical issues, but also reducing (and in some cases eliminating) many of the behavioral and speech issues associated with autism. Those who support TACA also tend to be those who believe that vaccines and other environmental factors are the cause. Though their focus is bio-medical treatments and finding the 'cure' they offer many great services benefiting families as well.

Autism Society of America
 is probably- in my experience- the middle ground. ASA has branches all over and truly does a LOT to make life better for those living with autism. In California, they offered a monthly family support outing that my son still talks about fondly. They offer support meetings and activities as well as resources for families. One big thing they are known for is sensory friendly films- a night where individuals with autism and other sensory issues can enjoy a night at the theater with brighter lights, lower noise level and the option to move around and bring your own snacks to fit special diets. For many, this is the only way they would be able to enjoy a family movie night and is such a wonderful event for families. (Unfortunately these are still too much for my little man but awesome nonetheless!) This is just one of the many ways they actively try to improve the life for those living with autism.

So where so we stand? We are among those who DO NOT seek a cure for autism.  We do not see our son as having a disease or illness. We see that his mind works differently than others. Not worse or less, just different. Though raising a child with autism certainly presents it's challenges we realize that autism is part of what makes Shaun who he is and we could not imagine seeking to 'cure' him of who he is. (We do of course see the need for treatment of those who have physical issues associated with autism- in our minds that is completely different but in our case, Shaun is perfectly healthy in every way. There is nothing to cure.) This comes in large part after having read articles from adults living with autism who have stated they would not want a cure either. Instead we want to help him to reach his highest potential and learn ways to better adjust to society- as well as bring acceptance and understanding so that he might gain the respect he deserves. We also do not see autism as a burden. Again, I say this not to make little of the challenges we face. There are many days when I want to cry as I'm washing dirty underwear from my not-quite-potty-trained 6.5 year old, wondering when it will finally click. Or when I see him struggle to make friends. Or even the physical aggression. It's not easy. But along with all those things comes an amazing mind capable of so much. It is truly astounding. The near photographic memory, the attention to detail, the quirky little traits that make Shaun the little boy we love, we would not trade him for anything. We believe that research is important, but it is not all there is. We would love to have definitive answers for a cause, so perhaps future children need not suffer in cases where it is preventable, but cannot fathom the idea of terminating a pregnancy due to autism. We believe more than anything, regardless of the cause, we need to take are of those that are already here and already affected...offering them the support and services they need to lead a better life and gain the respect they deserve. We believe that understanding, education and acceptance are at the utmost importance, so that children like my son are seen for their amazing attributes rather than their diagnosis. It is for all these reasons that we find ASA to be the best fit for our family and throw the bulk of our support behind them.

Again, I just want to say that while we may not agree with everything each stands for, I cannot find fault with anyone wanting to support any and all organizations geared to supporting autism. As parents, grandparents, friends I know we truly are just trying to do our best for our loved ones- we just have different opinions on exactly what that means. My greatest advice is just to personally look into each organization and find which bests suits your views and objectives. If your biggest concern is researching the cause- support Autism Speaks. If you want support bio-medical research and finding a cure- TACA is a great fit. (Again, they offer more services as well- certainly worth looking into!). If you want to more directly impact families, ASA is fantastic. And of course, these may be the big three, but there are certainly many more wonderful organizations as well and as an autism mom, I thank you from the bottom of my heart for helping in whatever way you see fit. 

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