Wandering petition

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Joined: 26 Dec 2009
Gender: Female
Posts: 20,931
Location: 미국

31 Mar 2011, 11:10 am

I'm not sure if this has already been posted, but I think that it is important.

I don't know if Landon Bryce has an account on here, but sometimes I visit is website (thautcast.com) and I also watch his YouTube videos (his username is thautcast.)
I just watched this video of his today, and it is about the fact that in the US, the Centers for Disease Control is considering adding "Wandering" as a diagnostic classification for autism and other similar disabilities. I am not going to get too far into my thoughts on the matter because they are nearly identical to his, so I will just post the video at the bottom of the post.

After you watch the video (or if you are aware of the proposal), and you agree with the points made, you should sign the petition, which is found here: http://www.change.org/petitions/tell-th ... t&opt_fb=t

Already over halfway to the required amount of signatures.

I really think that this will be a bad idea if put into practice... what are your thoughts?

[youtube]http://www.youtube.com/watch?v=MXfWoOQpEDU&feature=channel_video_title[/youtube]

Raaf
Hummingbird

Joined: 2 Sep 2008
Age: 62
Gender: Female
Posts: 23
Location: Ontario, Canada

31 Mar 2011, 8:32 pm

jmnixon95 wrote:

I really think that this will be a bad idea if put into practice... what are your thoughts?

Yes, I think that adding wandering to the diagnosis criteria would be a very bad thing!

When my son was about 4 years old, he would walk out of a situation he could not bear. For instance when I would be talking too long with someone while we were supposed to go home. He would not 'run away' but really wander, looking back, as if being on his own was scary, but he had to get out of the situation. (Later I understood why and from then on avoided situations like that.)

Although I never wandered as a child, I do have the tendency to want to get out and be on my own for a while, for instance when I am for a longer time of period with a large group of people (i.e. parties, weddings, conferences). I will take breaks and get out otherwise I will fall apart. I am an adult and can make that choice, so no one will call that wandering...

However, I think it is the same thing. 'Wandering' because they just want to, no.... need to get out of the tense situation!

another_1
Veteran
Veteran

Joined: 17 Jun 2010
Age: 64
Gender: Male
Posts: 528
Location: Columbia, SC

31 Mar 2011, 9:12 pm

EMAIL ADDRESS FOR COMMENTS: [email protected]

Online petitions are virtually useless. I would recommend sending comments to the above address, instead. Please feel free to verify this address - below is how I found it.

It took me a lot of looking to find anything verifying this, but here it is: http://www.cdc.gov/nchs/data/icd9/TopicpacketforMarch2011_HA1.pdf.

I called the CDC, which directed me to this page: http://www.cms.gov/ICD9ProviderDiagnosticCodes/03_meetings.asp. If you go down to the downloads section and click the first link, it appears that the email address to send comments to is: [email protected]

This does seem disconcerting, and it is worth at least asking for additional time for comments. The fears outlined in the video are at least plausible, and (IMHO) should be brought to the committee's attention.

Raaf
Hummingbird

Joined: 2 Sep 2008
Age: 62
Gender: Female
Posts: 23
Location: Ontario, Canada

31 Mar 2011, 9:30 pm

Would my vote count if I am not an American and/or living in the U.S.?

another_1
Veteran
Veteran

Joined: 17 Jun 2010
Age: 64
Gender: Male
Posts: 528
Location: Columbia, SC

31 Mar 2011, 9:49 pm

Raaf wrote:

Would my vote count if I am not an American and/or living in the U.S.?

Well, it IS the "International Statistical Classification of Diseases and Related Health Problems," so I'd think they'd at least pay some attention. I would mention that I was in Canada, but point out that changes as broad as this would most likely be adopted there as well.

This is what I wrote:

Quote:

In the recently released list of changes to the ICD 9, there is a proposed addition of "Wandering" as a secondary code to be used in conjunction with a diagnosis of Autism.

This proposed addition is causing concern in the Autistic community, and many would like to see this proposal dropped. While I am by no means a spokesman for the Autistic community, I would like to express my concern about this proposed change.

As you are certainly aware, Autistics often have severe sensory issues, which can lead to seemingly innocuous situations being quite overwhelming for the affected individual. It is also well documented that many Autistic individuals have significant communication difficulties, particularly when they are in a situation they find to be very stressful - such as during sensory overload. It is my concern - and one I have heard expressed by others - that this could easily lead to a person being repeatedly returned to a situation which is, for that person, unbearable. Since this classification could be applied to (according to your summary) up to 92% of those diagnosed with Autism, I fear this could, unintentionally, cause a great deal of suffering.

These concerns are outlined in greater detail in a video on youtube, (http://www.youtube.com/watch?v=MXfWoOQpEDU), produced by Landon Bryce (with whom I have no association beyond reading his online work), who works as a tutor for students with Autism, and who also publishes a blog about issues related to autism, thautcast.com.

I hope that you will take these concerns into consideration as you deliberate on this proposed change.

Thank you for your time.

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