It's Time to Go Beyond Autism Awareness

Published April 30, 2009 @ 02:05PM PT

Desert road from http://laist.com/attachments/lindsayrebecca/Desert_Road.jpg
As of today, Autism Awareness Month 2009 comes to an end, and it seems to me it's high time that we go beyond autism awareness (here is an action about doing this).

It's not that "autism awareness" is a bad idea. But too often now, saying "let's do X in support of autism awareness!" is taken as an end in itself. This suggests that "just knowing about" autism (citing the prevalence rate, rattling off a few of the DSM-IV criteria, mentioning Temple Grandin) means you've done your part, and that's not the case at all.

Being "aware" that autism exists, that individuals on the autism spectrum exist right now, right here, and probably right near you, is just a beginning. Jim and I feel pretty aware about autism, but we know we're still near the start of a long road to help prepare the best life possible for Charlie.

Yesterday a friend asked me about what exactly Jim and I have done as far as planning ahead for Charlie when we're gone. I know the basics that he'll need: a job, a place to live, things to do when he's not at the job, companionship. But providing for these is simply overwhelming, yet necessary, to contemplate. If we could buy a house, hire staff, train them, find an employer who'd employ Charlie, find things for him to do in the community when he's not at the job, find transporation for him to all of these places---I guess I would feel that things were somewhat set for Charlie. As things are, not a one of them is in place and the options that currently exist need a lot of improvements, to understate the matter.

How aware are most people about this?

"Autism Awareness" was just a starting point. Time now to move on, and move forward.

Go beyond autism awareness!

Share this Post

Comments (7)

It would ne nice to have a community of homes for those on the autism spectrum. I thought there was something like that in California somewhere. I need to get a special needs trust but that costs $ and I would have to come up with a trustee, same with a will need a beneficiary.

If I prolong it all long enough Nicholas will be 18 and I can put him down for beneficiary and have someone guide him on how to care for Matthew like a mentor.

I wish there was some sort of online seminar addressing these issues that all families will face someday, but especially for us teens.

Emily Iland spoke at our LAUSD mtg last Monday - I need to write about it, her son was dx at 13 and is now 25, in college and working part time at Disney. She gave good advice on accommodations in college and goals for her son after age 18 since they were not met in HS.

I taped it as secty and once I type out the minutes I can get the info posted. She is the one who told us about the CA DOE books that were given out at the mtg and ASA LA had them at their table at autism fair - one that I mailed you, should be next week since I used book rate.

Posted by Bonnie Sayers on 04/30/2009 @ 06:20PM PT
- Report close
  You must be signed in to report content.
- Reply
- Like
thank you for the book!

housing---this is a topic constantly on my mind. not only that Charlie has a roof over his head, but that his needs are understood and met and he is safe. please write about the talk by Emily Iland; would love to know more.

Posted by Kristina Chew on 04/30/2009 @ 06:39PM PT
- Report close
  You must be signed in to report content.
- Like
In California Alta Regional handles housing for mentally retarded and autistic persons. If you are already receiving services they contact the child at age 21 and ask them (without the parents) what is their decision- live at home, live in 6 bed community homes (which I had worked in). Alta Regional keeps the parents clueless because they want the child to make their own decision. If the child goes with Alta Regional then the child is own by Alta Regional. The parent has no ownership of their child. At these homes on the child's birthday a group of professionals meet (dietician, nurse, supervisor, house manager, occupational therapist, physical therapist) and they discuss goals, needs, spending money etc. Parents can bring up suggestions at this meeting. Another part of it is the child can only be gone with the parent so many days at a time outside the community home. There is no choice of housing. The decision is based on which facility best meets the needs of the child. I worked at four different cities and each place had an activity program, outings etc. The housing was contracted out by Alta Regional to a private agency. This private agency runs homes in 40 some states.

Posted by L I on 04/30/2009 @ 08:31PM PT
- Report close
  You must be signed in to report content.
- Like
Reply to thread
For your comment to be published, you will need to confirm your email address after submitting your comment. In the process we will also create a Change.org account for you so you can track this and future conversations. Don't worry - we won't spam you. We just want to promote constructive dialogue and find that people are more respectful when they are not anonymous.

If you already have an account, click here to log in.

First Name:

Last Name:

Email:

Create Password:

reply to thread started by by Bonnie
Check Spelling
- Email me when there are new posts to this thread
- Comment Policy
Cancel Reply
Together if we all do a little change has to happen, I have helped to instigate the first ever annual autism awareness fun run here in NZ and I am so proud of the other mothers as we all have children on the autism spectrum... when started no one thought we would achieve much, but together we have:
http://www.autismnz.org.nz/FunRun.php

NEW : My first ever time talking on radio and being on the autism spectrum myself found extremely hard and if it sounded like I was reading in parts I was! Did I repeat and forget things yes, I picked up on so many errors, embarrassed listening to, but guess can only get better. Anyway a good experience and all helps raise awareness, if I can do anyone can, speaking out not easy for me, anyway my first attempt a little amusing so enjoy: Wellness/Inspiration's - PlainsFM.org.nz - http://plainsfm.org.nz/podcasts/programme/wellness-and-inspiration/

You can still help as all funds raised will be going to help educate the commmunity: http://www.fundraiseonline.co.nz/funrun/ Mums organise run to help children - details go to http://www.asplanet.info/ COUNT DOWN "Less than 1 day to go, last count 780 + registrations received, if your in NZ or can get here make sure you keep 3rd May available, an event not to be missed - join us (Aspergers Parallel Planet)

Posted by Alyson Bradley on 05/01/2009 @ 08:25PM PT
- Report close
  You must be signed in to report content.
- Reply
- Like
Our hope is to one day literally run _with_ Charlie in a race----let us know how yours goes.

Posted by Kristina Chew on 05/02/2009 @ 09:06AM PT
- Report close
  You must be signed in to report content.
- Like
Reply to thread
For your comment to be published, you will need to confirm your email address after submitting your comment. In the process we will also create a Change.org account for you so you can track this and future conversations. Don't worry - we won't spam you. We just want to promote constructive dialogue and find that people are more respectful when they are not anonymous.

If you already have an account, click here to log in.

First Name:

Last Name:

Email:

Create Password:

reply to thread started by by Alyson
Check Spelling
- Email me when there are new posts to this thread
- Comment Policy
Cancel Reply
Posted by Kristina Chew "Our hope is to one day literally run _with_ Charlie in a race----let us know how yours goes."

I have not been back long from one of my most special moments ever, today I felt so allowed, alive and all I can say right now is brilliant every child, individual came together, we planted a seed and it grew so much more than we could of ever imagine... parents of autistic children please do not doult what your children can do, I saw so much joy and at the finish line so much pride, well over 1,000 nearing 2,000 do not yet know numbers but that does not matter, hardly a child sensory overloaded and the odd child that did we had a resource for that, it was a place and a chance for many just to be and I feel so privileged to have been able to help arrange such an event... it has open my eyes to see that there really needs to be many more events that are inclusive, where parents can just relax and not worry and every difference is allowed. And it was great to be in the majority myself, and I felt a real sense and connection with those special individuals today....

I know so much more still needs to be done, but I also believe awareness is key world wide first... www.asplanet.info

Posted by Alyson Bradley on 05/02/2009 @ 07:28PM PT
- Report close
  You must be signed in to report content.
- Reply
- Like
For your comment to be published, you will need to confirm your email address after submitting your comment. In the process we will also create a Change.org account for you so you can track this and future conversations. Don't worry - we won't spam you. We just want to promote constructive dialogue and find that people are more respectful when they are not anonymous.

If you already have an account, click here to log in.

First Name:

Last Name:

Email:

Create Password:

reply to thread started by by Alyson
Check Spelling
- Email me when there are new posts to this thread
- Comment Policy
Cancel Reply
@Alyson. "it has open my eyes to see that there really needs to be many more events that are inclusive, where parents can just relax and not worry and every difference is allowed".

These are important words. There should be more inclusive events that are created where differences are allowed. There needs to be more interaction with the world.

In the early 1990's the autistic/mentally disabled church members came up to us to hug and invite my son and I over to their group. People in our church were taken aback. It was nice for the first time for our family to be able to belong to a group. When my husband and I hug these disabled members church people were shocked. Eventually others started greeting them. By interacting with normal people their status improved. In a few years the disabled were allowed to participate in church activities like pass around the collection baskets, ushering etc. Their differences were ignored. Regular people treated them as capable.

It was the visibility with other people that changed attitudes. Today in our church people don't see the disabilities. They see the abilities even in adults that can't speak or who do things differently.

Thanks Alyson for a great comment.

Posted by L I on 05/06/2009 @ 12:52PM PT
- Report close
  You must be signed in to report content.
- Reply
- Like
For your comment to be published, you will need to confirm your email address after submitting your comment. In the process we will also create a Change.org account for you so you can track this and future conversations. Don't worry - we won't spam you. We just want to promote constructive dialogue and find that people are more respectful when they are not anonymous.

If you already have an account, click here to log in.

First Name:

Last Name:

Email:

Create Password:

reply to thread started by by L
Check Spelling
- Email me when there are new posts to this thread
- Comment Policy
Cancel Reply

Add a Comment

For your comment to be published, you will need to confirm your email address after submitting your comment.

If you already have an account, click here to log in.

First Name:

Last Name:

Email:

Create Password:

Comment

Check Spelling

Email me when there are new posts to this thread
Comment Policy

Comments on Change.org are meant for further exploration and evaluation of the ideas covered in the posts. To that end, we welcome constructive comments. However, we reserve the right to delete comments that are offensive, abusive, or off-topic; that contain ad hominem attacks; or that are designed to subvert or hijack comment threads rather than contribute to them. Repeat offenders may be permanently removed from the site at our discretion.

Author

Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.