thread: "Fixing" Autism. 5 mins. Please watch.

  1. #1
    Registered User

    Jun 2005
    USA
    3,991

    "Fixing" Autism. 5 mins. Please watch.

    This is beautiful.

    "Fixing" Autism - YouTube

  2. #2

    Nov 2007
    Earth
    4,434

    Far out, that made me cry. I didn't know those figures about funding, it's shocking isn't it! Out of all the families I know who are dealing with Autism, I've never heard any of them say that their child is getting ALL of the help they need. These families are being failed

    Thank you for sharing

  3. #3
    BellyBelly Life Subscriber

    Jun 2008
    In snuggle land
    4,499

    I cried

    Thanks for posting

  4. #4
    Registered User

    Jun 2005
    USA
    3,991

    It really is a crisis. As I just wrote to a friend...

    "E has been banging his head again really badly. He has bruises on bruises and yesterday it was turning into this massive welty looking bruised lump and I broke down sobbing and holding him tying to stop him. And I thought "f*&k this! I've been to the pead, I've been to speech and OT, I'm on the autism center waiting list but who the f*&k is helping??" I've cried on the phone to the autism center and told them I am desperate for help but who helps? We're doing the most amazing job C. Just keeping these children alive, we're doing the most amazing job."

    The families and these children need so much more help and support.

  5. #5
    Registered User

    Jan 2009
    1,488

    What an amazing man.
    to you meow.

  6. #6
    Registered User

    Jan 2006
    8,369

    That was quite insulting. Ever thought that autism doesn't need to be "fixed"? It isn't like cancer or AIDS. Yes, parents have to adjust - as does the child. But that doesn't mean anyone needs to be "fixed". There's nothing wrong with being autistic and the sooner people realise that the better.

  7. #7
    Registered User

    Mar 2008
    North Northcote
    8,065

    thanks so much for sharing that father's story

    FB: i think the "fix" part was more referring to his daughter's understanding. that this may of been the way she expressed it. no doubt she can see the toll it has on her family, and it is a battle for her to understand her autism and how it (doesnt) work in our society. i am sure her wish to be 'fixed' is only and truly to be able to participate fully in our life society. as it stands, there just aint room for them as there is not adequate support or understandings in place to allow them to live a full life.

    at least, that's what i got from it (i was thinking that one of the cards he wrote at the end was that he wants to keep a promise to his daughter...).

  8. #8
    Registered User

    Jan 2008
    Just Coasting
    1,794

    Gosh, that made me cry! Thanks for sharing.

  9. #9
    2014 BellyBelly RAK Recipient.

    Dec 2008
    Melbourne, VIC
    4,637

    That made me cry too. His daughter is just so beautiful and affectionate. I loved that part when the father said that he will not be ashamed. That really made me bawl. Thanks for sharing.

  10. #10
    Registered User

    Jun 2005
    USA
    3,991

    What if it IS like cancer or AIDS? What if autism is simply a few cells heading in the wrong direction and it CAN be fixed? I'll be damned if I'll tell myself I'm not "accepting" enough if I want to help my son stop feeling the anxiety he suffers, the frustration he battles and disconnect from society he experiences due to not being able to communicate. If he can be "fixed" I'll move mountains to give him that. In any case he's my beautiful little boy and I love and adore him- nothing would change that.

    What I find insulting is the insinuation that by trying to heal my son I am obviously not "adjusting" enough. Oh sure. I guess I need to just change my outlook and accept that it's all sunshine and lollipops that my son will only eat 3 foods, has a head covered in bruises and backs off in the playground when other children talk to him because he doesn't know what to do. Nothing wrong with any of that at all.

  11. #11
    Registered User

    Jun 2007
    Somewhere between asleep and awake
    1,194

    That was quite insulting. Ever thought that autism doesn't need to be "fixed"? It isn't like cancer or AIDS. Yes, parents have to adjust - as does the child. But that doesn't mean anyone needs to be "fixed". There's nothing wrong with being autistic and the sooner people realise that the better.
    I'm sure there are plenty of people out there that would like a cure for autism and I'm sure there wouldn't be many people out there who would turn down a cure, especially when people are watching their child hurt themselves, like Meow. People can accept a situation and still look for a way to fix it. There's nothing wrong with that. I understand your point about acceptance, but something does need to be fixed - whether it be a cure or support networks or changing the world. I, for one, hope that people never stop looking for ways to 'fix' in these type of circumstances. There is definitely room for improvement.

  12. #12
    Nothing like a cuddle from DD after a hard day's work!

    Oct 2007
    in my own world
    3,267

    Thanks for sharing Meow.

    I am absolutely amazed at the strength

  13. #13
    Registered User

    May 2007
    3,220

    I watched the footage. And I cried. I very rarely get emotional about such things, but this really makes me feel angry that Autism is not given the support it deserves.

    I have shared the link on FB

  14. #14
    Registered User
    Add Butterfly Dawn on Facebook

    Aug 2008
    Climbing Mt foldmore
    2,894

    Oh Meow, you made me cry. You are so strong and brave. Parents of Autistic children are amazing, the things you guys have to go through.
    I cant access utube from China, but I had an Autistic child in my class at Kindy a few years ago, and here, there is nothing for the parents or children to support them. Im not sure they even know what was wrong with him. It makes me real angry and sad to know that with alittle more money things could be so much better for alot of families.
    Hugs to you Meow, I hope today is a better day for you and your family

  15. #15
    Registered User

    Jul 2006
    Melbourne
    4,895

    One of the most powerful vidoes I've ever seen

  16. #16
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    I too would take the pain and frustration away from my child in a heartbeat if I could. I don't want to change her quirkiness... I just know how high her anxiety levels are and how frustrated she gets in everyday situations which result in meltdowns and self harm and attacking physically... mainly myself and my husband. If I could ease that pain in anyway I would. When we found out she had some kidney abnormalities and ureter issues, we let her have surgery to help fix those problems... If someone could come up with someway to do away with depression in me, I would say "go for it"... In the same way I want her autism fixed. I don't mind that she flaps, or rocks, or flicks her fingers, or thinks differently, or socialises differently. Those are all fine with me. Its the anxiety levels and the frustration I want to help her with.

    I think as parents we want to help in anyway possible. I know FB that you are coming from the perspective as one who doesn't think that you need "fixing" My BIL has Aspergers and he was telling us that she doesn't need "fixing". BUT at the moment, while I am typing this she is angry and frustrated and hitting DH because she can't figure out which rubber is hers and which is DD2's (they are exactly the same) and we can't tell her and she has just spit all over DD2, is smacking DH with a pencil and screaming... imagine if she didn't get so frustrated over a rubber. Imagine that.

  17. #17
    Registered User

    Jun 2005
    USA
    3,991

    I don't want to change her quirkiness... I just know how high her anxiety levels are and how frustrated she gets in everyday situations
    Completely agree. As I said to a friend on FB when we were discussing this "Quirky is how we're hoping E gets. I don't think you can or need to cure a personality type. But we need to fix his anxiety, frustration, head banging, fussy eating, gut health, severe communication delay etc etc etc." I'm completely cool with quirky. Quirky would be fricking awesome. But my child, and our family, shouldn't have to accept this level of suffering. It's not a way to live.

    I hope M is feeling better soon Christy. Dodging the blows can get exhausting

  18. #18
    Registered User

    Sep 2011
    1

    Thanks!

    Hello everybody. My name is Lou Melgarejo. I run a blog entitled "Lou's Land" and am the creator of the "Autism Speaks" video.

    I did a Google search for my video and was trying to guage the reaction to the video when I stumbled upon the BellyBelly forum.

    Thanks to Meow for sharing my video, and thanks to everybody else for the great conversation. I thoroughly enjoyed reading this thread.

    I would like to point out that I was indeed quite aware that some people take offense to suggesting that somebody fix autism or autistic people. I put quotes around the two times you see the word on purpose. The quotes allow me to use literary license and not use the literal definition of the word. Bianca doesn't need to be fixed, but she does need a lot of help and support. She also needs the system that is in place here in the US to be changed. At the present time I am in an emotion draining battle with insurance trying to get Bianca's ABA covered and her speech therapy covered. It really just makes you want to scream. The US likes to boast that we have the best healthcare system in the world, but that is only true if you are healthy and never have to really USE the system. That is what I am trying to fix. The system, the environment, the stigma, the shame... and I will keep fighting until I know things are better for future generations to come.

    Thank you again for sharing so many personal stories and feelings. It really means a lot to me and my family.

    Lou

    Lou's Land

    http://twitter.com/loumelgarejo

    Lou Melgarejo | Facebook