Posts about: » Autism

‘Bettering’ Ourselves, Helping Others

Written in 13-1-2010 by Melody | One Comment

I love being a mother, a wife, and all those things entail. There is also a part of me that says I could be doing ‘more.’ I do this site to give back to a community I see as needing some camaraderie. I’m sure there are some of my visitors who feel the same way.

What are some ways we can better ourselves and give back a little? I think a really big step for those that belong to our specific community is to find a way to bridge a gap. There is a gap between Non-Parent Self-Advocates (ASD non-parent adults), Parent Self- & Child-Advocates (ASD parents of ASD children), and Parent Child-Advocates (NT parents of ASD children).

I don’t see the two outer groups at being so different in what they want. But the message gets to messed up. ASD adults do want all of us to be accepted. Acceptance is only a piece of it. Accommodations and intervention are still key for maximum independence. NT parents want the kids to be happy and healthy. There are many who see their kids as damaged, yes. But in reality, they just haven’t been shown that their kids can get past that sometimes. Other times, the parents don’t have the support needed to help their children and are scared for their futures.

For those of us who are ASD parents of ASD children, we know how well our kids can do. At some point, we had to meet someone to become a parent. We know we were able to hold a relationship at least at one point. Some of us never had those early interventions and see some after effects of it such as mental health issues. So we can see what could have been done with ourselves and we try to do those for our children. Yes, there are sometimes that we will not be able to help our children be completely independent. But we have sometimes seen the abuse that can happen having experienced it ourselves. We know how to safe guard our children even if we have to lobby for it.

I hope that by the time my kids are my age, there will be a system in place to let ASD adults live on their own with accommodations. And I think if we bridge the gap between NT parents and ASD adults, we can get things to help all of us. Those dealing with the issues now, and our children that will deal with them in the future.

ASAN and AASPIRE Gateway Project

Written in 27-6-2009 by Melody | No Comments

We are writing to you on behalf of the Autistic Self-Advocacy Network. ASAN has partnered with researchers at multiple universities to create the AASPIRE Gateway Project (www.aaspire.org/gateway). The AASPIRE Gateway Project serves as a gateway for research that is committed to inclusion, respect, accessibility, and community relevance. We are excited to be involved in research that is conducted with us, not just about us. The AASPIRE Gateway Project is recruiting participants with and without disabilities and participants on the autistic spectrum. You can find more information about the project in the announcement below. We would greatly appreciate it if you could forward information about the AASPIRE Gateway Project to anyone who may be interested in participating.

Regards,

Ari Ne’eman

Founding President

Scott Michael Robertson

Vice President

Board of Directors:

Paula C. Durbin-Westby

Meg Evans

Dora Raymaker

The Autistic Self Advocacy Network

1660 L Street, NW, Suite 700

Washington, DC 20036

http://www.autisticadvocacy.org

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Participate in the AASPIRE Gateway Project

You are invited to participate in a continuing online research project called the AASPIRE Gateway Project. This online research project is conducted by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE, http://aaspireproject.org) in collaboration with Oregon Health & Science University, the University of Wisconsin-Madison, Portland State University, and the Autistic Self-Advocacy Network.

The AASPIRE Gateway Project is recruiting participants with and without disabilities, and participants on the autism spectrum, for a series of continuing online studies on topics such as health care, Internet use, online sense of community, identity, problem solving, and perspective taking. The goals of the online AASPIRE Gateway Project are

(1) to collect the Gateway Survey data;

(2) to use the Gateway Survey data to invite eligible participants to AASPIRE’s continuing online research studies; and

(3) to use the Gateway Survey data in AASPIRE’s continuing online research studies.

You may participate in the AASPIRE Gateway Project and contribute to continuing AASPIRE research studies if you are at least 18 years old, and you have access to the Internet.

The first step in joining the AASPIRE Gateway Project is completing the online AASPIRE Gateway Survey. The AASPIRE Gateway Survey asks about (a) personal information, such as age, gender, disability, education, and employment status, (b) information about which hand you prefer to use when doing activities such as writing with a pen or pencil, and (c) information about your personal preferences regarding interests, habits, and social interactions. Completing the AASPIRE Gateway Survey will take approximately 20-40 minutes. In return, you may choose to be entered into a drawing for a 1 in 25 chance to win a $25 gift certificate to Amazon.com or to receive 1 extra credit point in your introductory psychology class if you are a student at the University of Wisconsin-Madison.

Adults who identify as having a disability and adults who identify as being on the autistic spectrum are especially encouraged to participate in the AASPIRE Gateway Project.

If you’re interested in participating in the AASPIRE Gateway Project, or would like to learn more about AASPIRE or the study, here are three ways you can get started:

1) Go to the study’s website at www.aaspire.org/gateway.

2) Send an email to info@aaspireproject.org.

3) Make a telephone call to Christina Nicolaidis, MD, MPH, at (503) 494-9602 or Morton Ann Gernsbacher, PhD, at (608) 262-6989.

OHSU IRB # 3762; UW IRB# SE-2008-0749

Principal Investigators: Christina Nicolaidis, MD, MPH, Oregon Health & Science University

Morton Ann Gernsbacher, PhD, University of Wisconsin-Madison

Katherine McDonald, PhD, Portland State University

Dora Raymaker, Autistic Self-Advocacy Network

Separate rooms – Separate space

Written in 19-6-2009 by Melody | No Comments

Young woman with laptop studying on bed in dorm room, side view

Before we moved back to Texas, we lived in a 5 room apartment, 2 bedrooms, two open layout rooms that were supposed to be a living room and a dining room and a eat-in kitchen. As with most parents, we kept our room somewhat off bounds to the children. I bring this up because a moment has just occurred in our new home that I don’t think would have worked out so well in the old home.

I have had a long week so really wanted some “me” time. D, my oldest, has been off because his day isn’t as structured as it would be with school. S, my youngest, is himself, but that means attached. So getting me time would not have been possible before. But instead, I am getting time right now to post this.

We have two different living areas, plus bedrooms, plus dining areas here. So while I’m in here relaxing, D is in his bedroom, in his tent, playing his Gameboy SP. Where’s S? In the other living area watching his cartoons. It won’t last for long. Someone will want some more time with someone else. But it is nice to have separate space, in separate rooms, so we can all relax a little.

I must say, this is how I imagine an Autism Independent Living neighborhood would be as well.

The Aspie/Autie Family

Written in 15-12-2008 by Melody | No Comments

Are Aspie/Autie families on the rise? It’s a current fascination of mine. Obviously, to me, having made this site, I do believe there are enough of us out there. Even the other day, two Aspie’s from a prominent ASD forum made us aware of their new bundle of joy. Just the search of “Aspie Family” brings up hits. While there are only a few that are relevant, it does have me thinking.

As our means of communication changes, does that mean we are able to meet and reproduce? Now, I know, many Aspies and HF Auties have gone on to get married and have kids. But does the internet give rise to those of us who may not have been so lucky? My husband (ADHD) and I met in a video game. These other two Aspies, I believe, met on the aforementioned message board.

With this focus away from brawn and beauty, (though, I doubt any of us would say our spouse isn’t pleasing to look at) towards brain and connection, are we setting ourselves up to adapt and procreate?

I happen to enjoy my Aspie/Autie family. While we do like “together time,” we don’t need to actively participate together to feel connected. Such as now, I’m on my computer, the husband is playing Final Fantasy, and our kiddos are in bed, presumably asleep. Even if they were awake, we may all be doing separate things, but together.

This does not mean we don’t have that personal participation together. Earlier tonight we put ornaments on the Christmas tree. Other times, we may sit and cuddle very closely (as none of us like light touch) to watch TV. We don’t even participate in much “chit chat.” Only when we need to get something out do we tend to converse a whole lot.

Well, except for S, he chatters all the time. It’s a constant bombardment of dialog about what he’s doing, if he can do it, and what he wants to do it. I’ve gotten to where I can tune it out, but my husband isn’t quite so lucky. That’s a totally different topic though. So I will leave you with the question posed. Are Aspie/Autie families on the rise? (See poll.)

Welcome to Opening Day!

Written in 16-10-2008 by Melody | No Comments

There is obviously a lot of work needed on this site. I do however hope to have everything up and running within a month. I do have to admit though, I need help to get this started. I’m hoping to find some person or people who would be willing to help me.

Namely, right now, I’m hoping to find resources and links to include on this page. I know just how hard it is to find resource for ASD parents. For now, I would like to see options for people seeking education resources, especially homeschooling and how to deal with your child’s teacher.

The purpose of this site is for parents to join together whether or not you have ASD children. This does not mean, ASD or NT children, NT parents of ASD kids or ASD adults with no kids are not welcome. The primpary goal is support and resources for those of parents with ASDs.