When brains don’t work…

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Man trapped in giant maze

Or specifically, when my brain doesn’t work. I’ve never liked that phrase. My brother used it a lot growing up, “Uh…. My brain’s not working.” I knew what he meant as he and I had a lot of the same issues (though, he has had a harder time overcoming some than I have). But still, the phrase leaves me feeling, — I don’t know — ignorant? betrayed? I know the right word is there.

I work as much as I can to keep myself going and connected. For some reason though, the past couple of weeks, this has not happened. I’m not exactly sure what happened to cause my brain to finally shut off, but it did. I was distant with all of you who come here, with those on lists I usually frequent, with my friends and family, and worse of all my husband and children. I didn’t stop caring for them, I just had a hard time connecting.

I’m back and trying to jump start my brain. Diving in head first, so to speak. I’ve done this before, but I’ve never had a reason why this happens. Even now, I don’t think I have a solid one. Just that I finally couldn’t really handle interactions. This is not an apology or an excuse or even a reason. But I hope that some of you read this and realize you’re not alone when these things happen.

Upcoming this week, Future Horizons’ SuperConference where Tony Attwood, Temple Grandin, Jed Baker and Carol Kranowitz will be speaking. I will be going for several reasons. I do plan on updating periodically from the conference via my phone. I do plan on helping with ASAN’s efforts to confront Tony Attwood’s associations with FAAAS and their affiliates.

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ASAN and AASPIRE Gateway Project

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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

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Welcome New Visitors!

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Thanks to my friends at ASAN, AS Parenting is getting some exposure. I wanted to welcome those who happen to click links across “blogdom.” ASAN has been wonderfully inviting.

ASAN, Autistic Self Advocacy Network, is what it sounds like. Autistic people advocating for change. I first heard of the group during the 2008 political campaign. Many parents of autistic kids fired arrows at the president of ASAN, Ari Ne’eman, saying he didn’t know what it’s “really like.”

At the time, I was pretty new to the neurodiversity movement. While I agreed with the sentiment, I had a hard time defending his statements. I refound ASAN when I finally settled back down here in Texas. After having reconfirmed my Asperger’s diagnosis, I can say without a doubt, I know what it is to live in an alien world.

I do believe, no matter how naive it sounds, that we can live in harmony. Whether or not they can live in harmony with us, we need to try to understand them as much as we want them to understand us. More on these thoughts later.

If you would like to be included in writing for ASP, please e-mail me! I would love to include others thoughts and suggestions!

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State Congress Bills

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I’m doing this quick blurb, but have more that I’m waiting on. Specifically, I have some videos that we’re editting here at home.

I’ve chosen to speak to those of you in the US. I’ve spoken at two different events at Connecticut State Capitol. We have a great bill in committee to cover evaluations, medication and ABA. While, they are looking to expand the ABA to doctor prescribed behavior treatment. I’m rather hopeful that changing it, that it will also include cognitive-behavioral therapy which can help us adults.

I’d encourage all of you to see what your state or country is doing. Get active and involved. It’ll be a great experience for you and how to speak infront of others. And who knows, maybe it’ll convince those you speak to understand a little bit there is a whole adult population that “have a clue”.

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Going Past the Election

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For those of us in the US, tomorrow is election day. Whether you’re voting or not, and no matter who you’re voting for, we are going to have representatives in office. Following the election, it is very important to speak with your local state and federal senators and representatives.

On the Federal level, Autism Speaks is pushing for legislation called Expanding the Promise for Individuals with Autism Act or EPIAA. While Autism Speaks is often thought of as an oppositional voice to adults with Autism, I feel this bill has great potential for ourselves and generations that will come after us.

The following is a summary from Autism Speaks’ Autism Votes website (http://www.autismvotes.org/):

While these listing points are not perfect, I believe it’s a good start. Specifically, I feel the 1/3 “autism community” in the task force should comprise predominately of adults with autism. The easiest and best way to be heard is to actually talk to those people who are responsible for our nation.

Happy Voting or Non-Voting!

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Parents with Asperger’s: Part 1 – Negative Stereotypes

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Mother and Child Embracing

I hate having to do this, but after searching and searching, I feel it is needed. I have had people ask me some worthwhile resources for parents on the spectrum. I’ve also been doing my best to find reliable sources to draw from to help build some concrete articles. Instead, what I’ve found is not only inaccurate, in many cases, down right brutal. Take an excerpt from an article in USAToday from 2007

Though professionals use the same diagnostic criteria, interpretations make for wide disparities in diagnosis. Ami Klin, head of the Yale Developmental Disabilities Clinic, says some people may have family members with autism-spectrum disorders and exhibit features of Asperger’s, such as “social deficits and a great deal of rigidities,” but these traits are not tantamount to the diagnosable condition.

Forming close friendships and dating run counter to Asperger’s adults’ goals, colleague Tsatsanis says; Klin says he has never known a parent with Asperger’s.

Bryna Siegel, director of the Autism Clinic at the University of California-San Francisco, concurs that an Asperger’s parent would be rare, and she knows of just one short-lived marriage. Recently she does more “un-diagnosing” than diagnosing, she says.

Most if not all have also heard of FAAAS and CADD (or the Cassandra Effect) that suggests that Asperger’s partners (and parents) deprive their partners of affection. As well, it is said we apparently seek out socialites in hopes of them being our mentor. [An aside. They should really meet my husband to see how he works into their frame work. He's hardly social!] Even Tony Attwood has in previous conferences suggested we are abusive, leave our children embarrassed or unloved, and that our children will hate us.

From my experience with my children, and the few Asperger’s parents I’ve met, this is in no way accurate. I’m sure there are people within our group that are this way, as there are neurotypical people who are also abusive and neglectful. To characterize us, in my humble opinion, as liars [USA Today], neglectful [FAAAS] and abusive [Attwood], is not only cold and heartless, but also cruel and hurtful.

(to be continued….)

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Us and Them

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I feel sad saying this, but I’m starting to think along these lines. Neurotypicals to Atypicals. Curebies to anti-cure. However you want to phrase it. I didn’t start out thinking like this, but slowly, due to feelings of rejection, I really think there are some fundamental differences.

I wanted to touch on this last night, but decided the Welcome was enough. I started to write a post, but this morning, due to a little discussion on a listserv, I’ve decided to start over. The comments were about how parents with Shadow Autism were “disrupting” the innerworkings of many Autism groups.

First, we must analyze this Shadow Autism, which I had never heard.

Definition: Autism is a spectrum disorder, meaning a person can be a little autistic or very autistic, and individuals can have varying symptoms. The term broad autism phenotype describes an even wider range of individuals who exhibit problems with personality, language and social-behavioral characteristics at a level that is considered to be higher than average but lower than is diagnosable with autism. Individuals who meet the criteria of the broad autism phenotype are identified through a test called the “Social Responsiveness Scale.”

It is theorized that parents who are a part of the broad autism phenotype are more likely than other parents to have multiple children with autism. Some studies seem to support this theory.

So the Shadow Autism just means autism-like symptoms, but not enough to diagnose. I know this does not classify us who are on the spectrum. The issue I came to today is that the particular email in question was the “push aside the feelings” attitude of the neurotypical father. We have a hard enough time understanding them and trying to make our voices heard. Then to be told our opinions on how things are handled disrupt the organizations who are trying to help is disappointing to say the least.

We need to make our voices heard to gain acceptance, but more often than not, instead of being accepted, we are seen as confrontational. We need to keep trying to understand them, but we also need to keep pushing our own agenda too. What was worse was the response to this email that we are all working to the same goal.

Our goal is acceptance whereas theirs is one of conformity. And so here I am trying to find the way we can all work together without falling apart. Us and them together as one when there is such dissention. We have a long way, but I’m sure there is a way.

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The Importance of Advocacy!

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Stamp

With our move, I have come to realize one big truth about myself. I must advocate for my children and myself. While I still know people that live in the Dallas area, I am required to open myself up to more than those people. So far, I have been quite lucky with those that I’ve met.

School professionals? They have congratulated me on my knowledge, order and preparation. They like the initiative I’m taking to learn about my children’s education. All around, it has been an excellent experience. They are all quite aware that I have Asperger’s and have concluded that both boys do indeed qualify for an IEP under the diagnosis of Autism.

Rehabilitative professionals? They also have noticed my keen knowledge of the boys. Surprisingly, I have learned that most parents don’t get to know the ins and outs of their children like I have. I’m not sure why, but it comes natural for me to learn every aspect and keep up to date. There was no shock this week when my oldest, now 5, was evaluated at below a 3 year old level, and no shock that my youngest, now 4, was evaluated at about a 3 1/2 year old level. We have come to grips with this and do what we can do push them further. And once again, I have let them know that I have Asperger’s.

I have now come to my roadblock when it comes to success with advocacy. I am now trying to become part of a local mom’s group. Armed with my relatively new diagnosis of Asperger’s Syndrome, I am doing what I can to advocate. I make sure to let people know about Autism Spectrum Disorders. I make them aware that my children are delayed for their age. What I seem to keep forgetting is advocating for myself. So today, I ran into my roadblock from opening my proverbial mouth. On the message board for this group, I chose words unwisely. I upset someone unintentionally. But I took that moment to explain myself when I had the opportunity. I invited the person to read more about social deficits with those Asperger’s people.

I usually don’t upset others, but I do know I make rude comments at times. This is not about making excuses though. This is a time for learning as well. Both from my side, on learning that certain comments are better left unsaid, and from the other side, that sometimes people don’t always intend to be mean.

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The Autism Reform Act of 2009

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Ladies and Gentlemen readers,

I ask today that you all take the time to read this act ( http://www.change.org/ideas/view/accept_and_sign_the_autism_reform_act_of_2009 ). There are many wholes in this proposed legislation, but there are some key elements that we as parents really need to look at. We have the ability to help make changes since we are in unique position.

“10.) Insurance companies must make available all resources for children and adults with Autism Spectrum Disorders including but not limited to any items deemed necessary by the  physician for the treatment of metal toxicities and any other therapeutic orders their physician may order.”

This is point is a double edged knife. I wholely disagree with allowing chelation, but that is for everyone else to decide. The part that’s quite wonderful is that now we can comfortably get diagnosed with Asperger’s ourselves and have the option of receiving therapy for it. I know there are some who chose not to get diagnosed because some insurance companies will deny them therapies.

“12.) This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions.”

I hate this portion and love this portion at the same time. I would hope that someone like ourselves would be able to get on the panel. But I do think it’s imparative that we push that not only parents sit on the panel but others with Autism Spectrum Disorders. While our voices as parents can  help, our voices as people with ASDs can do even more good.

Please take the time to write to these people. Make your voices heard.

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