FOR IMMEDIATE RELEASE

December 16, 2009

President Obama Announces More Key Administration Posts

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

*         Jonathan M. Young, Chair, National Council on Disability

*         Carol Jean Reynolds, Member, National Council on Disability

*         Fernando Torres-Gil, Member, National Council on Disability

*         Chester Alonzo Finn, Member, National Council on Disability

*         Gary Blumenthal, Member, National Council on Disability

*         Sara Gelser, Member, National Council on Disability

*         Ari Ne’eman, Member, National Council on Disability

*         Dongwoo Joseph “Joe” Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

I want to first congratulate everyone who is being nominated.  I’m sure you’ll represent your communities well, and our nation well.

Ari Ne’eman, Nominee for Member, National Council on Disability

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions.  He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services.  He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion.  Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he  studies political science and expects to graduate in May 2010.  In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

My extra congratulations go out to Ari Ne’eman. I first got to know Ari earlier this year. He is a tender voice for our community, but also quite outspoken. I think his ideals with regard to where national policy is with respect to the Autistic community at large are spot on.  In my honest, and humble opinion, he more than deserves this spot. I’m sure there is a bright political career in front of Ari.

You can read some of what Ari has done above, and there is even more at ASANs website, link on the left column.  Today though, for those that live in the United States, I’d like you all to take the time to email your Senators on behalf of Ari.  The following is what I have sent to my two US Senators.

I’d like to encourage you to confirm President Obama’s nomination of Ari Ne’eman to the National Council on Disability. I am a 27 yr old mother who has been diagnosed with Asperger’s Syndrome. As well, I have two small children ages 4 and 5 who also have Autism Spectrum Disorders.

I have grown to know Mr. Ne’eman over this past year and find his character to be quite sound. He truly has the best interest of all people with Autism Spectrum Disorders, adults and children alike. He would be a valuable resource for all in this position.

Thank you very much for your time. I hope we can count on you to confirm this position.

Sincerely,

Melody Latimer

Obviously, mine is a little more personalized as I have enjoyed the company of Ari and the other ASAN leaders via their listserv, but Ari truly is one of the ‘good guys’ in the Autism spotlight. Feel free to comment or email me privately if you’d like to know more about Ari’s record or ASAN.

Amongst the controversy from this past week (RE: “I am Autism.”), a very intriguing, but startling question was posed. “What will happen when [/if] Autism Speaks folds?”

I don’t expect them to fold. I think they will survive with the parents that cling to them now. But I think they will damage a lot of their credibility along the way. What will happen after that? Some parents that I’ve come in contact with say, “Well, if you don’t like them, donate your money else where.” or spout something about how no one else is bringing awareness.

I posted earlier this week about I am Autism dot ORG. We have been discussing what we can do to really help get it started. Suggestions have rolled around about needing a parents section. Not AS parents, but parents of ASD kids. Something that has meaningful resources for parents with a friendly Neurodiversity atmosphere. I’ve said I would be happy to help contribute. This is one way to help bridge the gap.

I’d like to see a lot more than just this happening though. Where can families put their money? ASAN is a worthwhile place that I like to support when at all possible, but I must admit, I do not see a lot of NT parents donating. Autism Society of America has been a decent place to turn, but the more Autism Speaks reaches, the more it seems ASA associates with the same mentality. Don’t even get me started on National Autism Association or The Autism Science Foundation with their  for that matter.

My biggest want out of all of this is to see more assistance go to AASPIRE along with bolstering an advocacy group such as ASAN. There are a lot of ways to do this, but I think for all involved, it is a worthwhile initiative. My greatest hope is that we will be able to reach and help families with Autism.

More like, “I’m what happens when you cannot accept Autism.”

Warning: If you have not seen this video posted else where, it is very hurtful to those of us on the Spectrum. My husband even asked me to stop playing it in his presence after 20 seconds. If you have children with Autism, please make sure they are no where near until you have watched it for yourself.

Autism Speaks | “I am Autism.” PSA

Many parents seem to defend the practices of this film because it “brings awareness” and “no one else” is doing anything. One parent went so far to say, “You need to do SOMETHING, even if it’s WRONG.” Of course, this goes against my logic. Not to mention goes by another old adage, “If you can’t say something nice, don’t say anything at all.” But don’t worry, we’re the ones with no empathy.

I have tried to think of a way to quantify my exact feelings from this video. I would never let my kids see this video. I would never want ANY Autistic child to see this video. No matter the gifts that come from Autism, they are overshadowed by this view point. We are not a burden if we are accepted. We won’t be accepted without awareness, but it must be positive awareness. Negative awareness only seeks to drive our chances of inclusion away.

Dan Marino Foundation | “No Myths” PSA

I much prefer this video for some obvious reasons and others not as much. It definitely paints us in a better light, but it does not hide the truth of our disability. It is very extensive in showing us as people who not only need acceptance, but also support. I think the second part is the critical issue here. Most people feel the Neurodiversity movement is asking for needs to be ignored. The support helps us gain greatest independence.

Some of my fellow self-advocates have set up a response: I am Autism.ORG It should grow more to include some valuable resources on positive Autistic outcomes.

Autistic Self Advocacy Network | Protest Autism Speaks “Walk Now for Autism”

Okay. That title seems a bit strange to me, but it really seems to describe how I feel today, this week.

My oldest, more affected, son started Kindergarten this school year. We’re in the middle of week #3 and I’m wondering how NT parents do this. And when I say ‘this’, I’m not talking about parenting, or raising a child with Autism, but how they deal with school personnel.

I’m happy to announce that I’ve joined both my boys’ schools’ PTAs. I’m even being named the VP chair of one committee for one school. I’ve done what I can to get awareness out about Autism, not only in my kids, but myself. I’ve started really pushing my therapy goals, especially those of not being stepped on. I’ve even gone to some Asperger’s adults’ Support Groups, though didn’t find them terribly fulfilling.

This week though, I’ve been thrown a curve ball. Despite all I’m doing to be involved, all my attempts at awareness, everything I’ve done for myself and my kids, my son is regressing. First two weeks of school, he had some issues with transitions. Not a big deal, we all expected it. He was assigned an aide even to help him with this. This week? His transitions have gotten much worse. He has been punished two days in a row by removal of his recess time. He’s been running away from his aide, teacher, and other personnel.

I’m doing what I can. I wanted to shadow him tomorrow, but that attempt is being thwarted by my own mother. I’m getting his IEP tomorrow so I can go over the specifics of it. I have told his SpEd teacher, who doesn’t have any control over the majority of his day, that we need to do a FBA (functional behavior assessment) so that they can put a BIP (behavior intervention plan) in place. Though, I don’t think she 100% agrees with me that this is needed. This is not the only thing that’s happened to him. He had a bad day last week too, where I was told I should send him with a water bottle because he “kept getting up to get a drink of water.” By the description, I knew he was perservating, not thirsty. I told his teacher, but she still insisted on the water bottle. They didn’t give him his Disney Cars school supplies either, which I told them they needed to as a re-inforcer.

I’ve done what I can to help him to the best of my ability. I’ve tried to be nice, and cordial, and help the school as well. Now I’m going to have to put a foot down because my son will not slip through the cracks. I refuse to let that happen. But how, I ask? How do NT parents do this and not crumble to pieces? When I know so much of what he’s going through? And have given them so much insight? And I do everything for awareness? How is this the end result? Or not the end result, but the beginning result?

This has been a heart breaking week. And we’re only at Wednesday. And we’re not even a month into school. And we are already fighting to help him just stay afloat. It’s a sad day, and the heart of the matter when it comes to all Autistic students. Disabled students. Disabled people. Acceptance, Awareness, and Accessibility.

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.

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….)

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

————————-

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

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.

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!

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.