What does the Autism community need?

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Registered: 05-26-2000
What does the Autism community need?
7
Tue, 09-18-2007 - 6:12pm

Hi everyone!! It has been a while since I've posted. We've had a lot going on over the summer, and hubby is possibly needing surgery, so I've been offline for a while. I hope everyone is well.

I've been thinking for about a year now of starting a non-profit for families of spectrum kids, and lately I've been doing a bit more work toward launching this organization, but I'm now needing some thoughts and input from the autism community.

Here are my thoughts:
-we need an organization that not only has links and info, but takes families from pre-diagnosis through school and everything in between (what to do now, where to go, treatment options etc.) I know that if I didn't have a friend with a child on the spectrum I would have been lost--she literally told me what to do next etc.

-we need this community to be a central point for families to find appropriate doctors/support groups/etc within their own communities (think click on a state, then city and a list of all known resources is available)

-we need an organization that not only fund raises for research, but focuses on the financial needs of the families (if I have learned anything since my son's diagnosis it is that many families struggle financially to get the help/support/therapies/products etc. and it needs to be addressed)

These are the main things that I would like to cover with this organization with a focus on providing autism-related financial assistance to families.

My questions are:

Have I somehow missed that there is an organization out there that does any or all of these things?

What, in your opinion(s) is the greatest need in the autism community that is not fulfilled elsewhere?

Any and all thoughts are appreciated. I don't want to reinvent the wheel, these thoughts are things that I've heard repeatedly that are lacking when speaking to my local autism community, and I feel like I should do something about it if, in fact, there is a need.

Heather
mom to Josh (7, AS), Justin (3, nt)

iVillage Member
Registered: 06-25-2003
Wed, 09-19-2007 - 9:50pm

This came up in my local meeting last night, so it is fresh on my mind.


One thing that came up was the total lack of good, facilitated social skills programs

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 05-26-2000
Thu, 09-20-2007 - 11:33am
Thank you very much Paula for your great thoughts and input!! I appreciate it!
Avatar for littleroses
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Registered: 03-28-2003
Thu, 09-20-2007 - 12:35pm

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Registered: 03-27-2003
Wed, 10-10-2007 - 10:06am

I would really agree: the two things I have found hardest are the lack of networks/support for us as a family (lots of services concentrating on Euan, but nothing much for us as parents or for his siblings) and the lack of knowledge/support within the NT community - kids and teachers. A really good information pack/traning session on integrating special ed kids generally, aimed at different age groups, and perhaps a specific autism/asperger's/spectrum one that could be used with a mainstream school class expecting a supported student would be great. Perhaps they do exist, and in that case your not-for-profit could look at rolling them out more extensively rather than reinventing the wheel (and if they don't exist, they should!!)


Kirsty


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Registered: 10-03-2004
Wed, 10-10-2007 - 1:22pm

The biddest need we personally would have is money for services!!! We are bleeding money out of every orifice to pay for the therapies and specialized instruction ds needs to be successful. But of course as we are denied an appropriate school due to horrible state of affairs here, assemblies and packets for teachers just doesn't mean anything to us, so we are not the general ASD community!!!

The financial support of ASD families is completely nonexistant in my book, as insurance covers nothing and, and, and. Get lobbying for insurance to have to cover neurological disorders in children. How can the law not force them to??? There's a good focus.

Some random thoughts,

Sara

iVillage Member
Registered: 06-26-2007
Fri, 11-02-2007 - 1:42am
A data base for finding tests that are appropriate for children on the spectrum. I am always looking for more suitable tests to pin point my childs needs. Other than that the cost of therapy is unreal, and not covered by insurance yet.
iVillage Member
Registered: 10-01-2007
Mon, 11-05-2007 - 3:58pm

Hi Heather,

It is fantastic that you are working on this project. We have something here in CA, which I think offers many of the services mentioned. It is called TACANow and can be found at http://www.tacanow.org

They may have plans to go national or be able to direct you to facilities in your state, but in the least you can use them as a model for your organization.

Hope this helps.

Michelle,

p.s. my project is getting the word out that there are many un-dxd and mis-dxd adults on the spectrum... and many women in relationships with these men have very little support!




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