Thursday, May 9, 2013

To eradicate or not to eradicate....

 TRIGGER WARNING~ talk of cure/not to cure as it relates to local autism group and their mission statement. If this may offend you, don't read any further....

 So, I know the topic of to cure or not to cure is always a heated discussion. I used to seethe with rage when people would even suggest the topic to me. However, I have learned that I am not always right. Wait, I said that??? :)

  Some kids are severely autistic. They are not only non verbal, but also super aggressive and need constant care. So for their parents, it's their right to choose cure/no cure. Who am I to say what is right for that family, or that child/adult.

  I try to always put myself in someone else's shoes. To not live life in my little bubble. To realize that my opinion isn't always the only one. To always take someone else's feelings into consideration.

  That being said, it was brought to my attention that a local autism group had a controversial mission statement. It reads like this: "It is our vision to see the condition of Autism eradicated in our lifetime." SAY WHAT???? You want to see my son eradicated? Autism is a part of who he is. It is why he is quirky. I love those quirks!

  You are an autism group. The only one in this small area. How can you have a mission statement like that? Shouldn't you be in the happy medium? To me, that statement has no business being on your home page, for all to see..... Our family will not be participating in their walk this year because of this statement.  Our family raised almost $600 for this group last year. Had I known they wanted autism eradicated, I wouldn't have wasted our time.

  Granted, they did give our son a grant so we could get him some therapy items last year. That was AUSOME and we were totally grateful for that. (that too was before I saw what their mission statement was.) But it burns me to my core to read their statement. As I said, I know we all feel differently, but as a group, they need to take the middle ground.....Am I right or wrong?

  Liam has asked why we aren't participating. I told him why. I don't lie to my son. He wrinkled his nose. He asked me what eradicate meant. I told him. He said, "but it's my super power!" I told him I know this. He had a funny look on his face. One of hurt. It hurt my son that YOU (unnamed group) want his Autism eradicated. Doesn't that bother you? Hasn't it occurred to you that you may be excluding all the people that embrace autism, from your cliquey little group? We don't all feel the same way, and everyone has a right to their feelings, but by making such a statement, you are in fact alienating those that feel differently. And as a "group" it is my understanding that you should take the feelings of ALL into consideration.

  A great example of this is another semi local autism group. This one out of Wilkes Barre Pa. Their mission statement reads as follows: S.A.F.E., Inc. is a 501c3 non-profit organization supporting families affected by 

Autism Spectrum Disorders (ASD). Our membership is comprised of individuals with ASD and those who love them. We 

provide members, families, caretakers and professionals with support and information pertaining to the latest interventions and 

educational practices, therapies, and available programs for individuals with ASD. We also provide opportunities for those 

living with ASD to overcome social barriers, enjoying group and leisure activities in the community. Our goal is to help people 

with autism live full and independent lives.


  Now to me, that is a mission statement. Do you see how they left their personal feelings out of it? Am I right or 

wrong when I say that is how a support group should be? I know it bothered others on my personal page when I 

first posted about not taking part in the walk and why. So I know this will probably bother them too. For that I am 

sorry. I don't like to bother people or hurt their feelings. With that being said, I can't stand behind a group that   

disregards others feelings. (not just mine, Pita's or my son's, but others in the same community we are to be 

supporting.) If this is wrong, then I don't want to be right.....


1 comment:

  1. I agree with you. After attending one or two different meetings after our son was diagnosed, I stopped going. I stopped going because I don't think our son needs a "cure". Does he need support? Yes! Does he need understanding? Yes! But a "cure"? No thank you. I realize that we are lucky in that our son is very high-functioning and that we don't face a lot of issues that other families on the spectrum face on a daily basis. We do, however, face issues just as difficult in their own way. I have said time and time again that if it weren't for people who "think outside of the box", we'd still be in the Dark Ages. Historically speaking, many of the advances made in the sciences and the arts can be attributed to individuals who appeared to have autistic tendencies. I will NOT support any group or person that does not recognize the importance of our kids and young people and their abilities. Thank you for speaking out.