Tuesday, February 8, 2011

Not Broken

I watched a documentary the other day that got me to thinking. I know, dangerous, eh? The documentary was about three young men at different places on the spectrum. One was non-verbal, one was moderate and the other had Asperger's. The non-verbal boy and the boy with Asperger's seemed very comfortable with their autism. The young man with moderate autism was frustrated and kept on talking about his brain being broken.

I asked myself, "Why such a difference in attitude?" The answer became obvious. It was the views on autism by those around the individual on the spectrum. I heard not one negative word about autism from any of the people around the two who seemed happy. The boy with Asperger's said he viewed his autism as an asset. The non-verbal boy was surrounded by neuro-typical teens and adults who treated him with respect. The unhappy boy's parents said his brain was plagued with autism. They constantly spoke about it as a disease. They did all of this in front of him. It was very apparent that the parents who spoke negatively loved their boy. I honestly don't think they realized how their comments affected him. They often talked around him to others. When others talk about you as being broken or plagued, you're eventually going to believe it.


I understand that dealing with the symptoms of autism can be very difficult, especially for the caretakers. There are many that view it as a disease and use words like "afflicted", "broken", and "suffers from". Negative words are often sharper than any blade. Research shows more and more that individuals with autism are aware of everything that goes on around them and that includes conversations. Just because someone can't verbalize their feelings doesn't mean they don't have them. Rail against autism, hate it if you want. Make yourself miserable with constant negativity. That's your prerogative. Just keep it away from your kids. You don't have the right to suck them into your blackhole of misery.

Andy and I are very conscious of what we say around Xander. I don't ever want him to have that feeling of self-loathing. It would absolutely break our hearts. I want him to know that he's not broken.

19 comments:

  1. Oh, that is so sad, I am heartbroken for that little boy. I am sure his parents love him very much and don't realise what they are doing *sigh* I would be devastated if my son felt he was broken or wrong. Mind you, all parents should always be positive about their children, autism or not, it would be interesting to see if they are negative about their NT children.

    One of the most upsetting things I ever witnessed was a Mum who said if her daughters teeth didn't grow in time for Christmas that it would ruin the Christmas photos as she had bought a lovely dress for her. Honestly? the child looks absolutely fabulous minus her front teeth, so cute and so proud that they had fallen out. You should have seen her face drop when her Mum said that. A throwaway comment that did a lot of harm (the child is convinced she is ugly and she is so beautiful).

    I better stop rambling:)

    Jen

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  2. It's absolutely true that one negative comment is more powerful than a thousand positive ones.

    The boys were all teenagers, the oldest being 19.

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  3. This is true for every 'disease'. We try to be so positive around our son who has LOTS of medical problems and he is the most joyful little guy, despite all he's been through.

    We do our best to give him every opportunity to succeed and we cheer him along the whole way no matter the results.

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  4. Loved this reminder. My Youngest son has PKU. Yes, his diet is major pain, but I desperately try to keep that thought or actions to myself. His diet is a hassle for sure, but honestly, a labor of love. Would he ever think of it any other way breaks my heart.

    Thank you.

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  5. excellent post. I've started saying "special powers" instead of 'special needs'. Things might be a little tougher for my bird, but she most certainly isn't broken. Maybe a little dented...
    :)

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  6. Often ignorance of a disease does more harm than the disease itself. Very similar to the stigmas surrounding mental illness. We have a long way to go.

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  7. Thank you thank you THANK YOU. This is so important.

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  8. Great post! What was the name of the documentary?

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  9. Thank you for the reminder ...

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  10. WOW
    this is amazing
    I am linking this up in my post
    I wrote recently on why its important to not hate autism becasue among other things it impacts self esteem

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  11. I work hard at never saying anything negative in front of my daughter, but I can't seem to pound this into my husband's thick skull.

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  12. For sure! Our kids are not broken.

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  13. Great post!

    What is the name of the documentary? I want to see it!

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  14. love. I am interested in the documentary as well, if you get the chance to share. thank you.

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  15. Hey all! Thanks for all the great comments. I won't be posting the name of the documentary here as I want the focus to be on the issue. I'll be happy to email you the link if your email is available in your profile.

    ~Marianna

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  16. Please would you email me
    KajoliT@msn.com
    Thank you again fpr this post
    I am hoping as many people as possible read your post

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  17. Thanks a ton for your email
    Will be you-tubing it soon

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  18. We celebrate Blue's HFA on a daily basis. The times my heart shatters, the walls we reach can't scale @ the moment...another time, another place. He has Autism. It does not have him. :)

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