Congressional Autism Hearing Recap

The stated goals of yesterday’s Congressional Oversight and Government Reform Full Committee Hearing: “1 in 88 Children:  A Look into the Federal Response to the Rising Rates of Autism” were to “…get a clearer picture on what is being done, what questions still need to be answered and what needs exist for those children, adults and families who live with an Autism Spectrum Disorder.” This hearing was notable for its precedent-setting inclusion of autistic representatives. Committee Chair Darrell Issa noted that as long as he heads the committee, it will stay open to autism concerns and may even try to find funding to address them. Video coverage of the entire hearing is embedded at the end of this post. The hearing witnesses (and each’s official testimony): Alan Guttmacher, M.D. (testimony) Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health Coleen Boyle, Ph.D. (testimony)…

How the DSM-5 Draft Autism Criteria Will Affect Law, Policy and Service Provision

The Autistic Self-Advocacy Network’s Ari Ne’eman and Steven Kapp have released a policy brief: What Are the Stakes? An Analysis of the Impact of the DSM-5 Draft Autism Criteria on Law, Policy and Service Provision [PDF]. The full PDF brief can be found at bit.ly/DSM-5, and “…summarizes the legal and policy details of the program under discussion and attempts to identify the likely implications of the DSM-5’s outlined changes in the criteria for Autism Spectrum Disorder on eligibility, benefits, and access to services and legal rights.” The legal and policy areas in question are described, then followed by analyses of the proposed DSM-5 changes’ implications: Individuals with Disabilities Education Act (eligibility criteria) Impact of DSM-5 Shifts on Students with Disabilities Receiving Services Under IDEA ADA/504 Accommodations (guaranteeing non-discrimination re: disability in schools and in the workplace) Impact of DSM-5 Shifts on ADA/504 Protections Medicaid-Funded Developmental Disability Services Impact of the…

The Self-Advocate/Parent Dialogues, Day Ten: Paula C. Durbin-Westby

We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords. The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate,” self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else, and autism parent Kristina Chew, who blogs at We Go With Him and Care2.com. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue Our thanks, once more, to everyone who had participated in the Dialogues. We’ll wrap up with a reminder of why we hosted this series in the first place: Because it needs to happen. Because being a parent of a disabled child is not the same experience…

The Self-Advocate/Parent Dialogues, Day Nine: Kristina Chew

We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords. The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate,” and self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue. Today’s post is by autism parent Kristina Chew, who blogs at We Go With Him and Care2.com. -The Editors —- What A Parent Can Learn From This Dialogue As I started teaching my first class (8am, Elementary Latin) of the 2011-2012 school year, the thought occurred to me: The freshmen students in the first few rows are just a…

The Self-Advocate/Parent Dialogues, Day Eight: Amanda Forest Vivian

We held a dialogue series last week between self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network; and parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords. The series continued this week with Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter and blogger at ASParenting, and Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate.” Stay tuned for two more autism parent posts: One from a neurotypical perspective, and one from an Autistic perspective. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue. Today’s post is by self-advocate Amanda Forest Vivian, blogger at I’m Somewhere Else. -The Editors —- This is just a theory, so be gentle. But I think a lot of problems between non-disabled people and disabled people might have to do with the fact that for most born-disabled people,…

The Advocate/Parent Dialogues, Day Seven: Kassiane

We held a dialogue series last week between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Readers let us know that they wanted more, and more perspectives, so we’re continuing the series through this week, and original participants Zoe, Rob, and Ari are stepping back and letting other voices have the floor.  This week’s first post was from a representative of both parties: Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter, and blogger at ASParenting. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue For those who note that these Dialogues are a challenging and thorny process, and wonder about the usefulness of participation, consider a comment left on Melody’s post by OutOutOut: “I’m tired of the fighting, too. I really am.…

The Self-Advocate/Parent Dialogues, Day Six: Melody Latimer

We held a dialogue series last week between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network, You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue Readers let us know that they wanted more, and more perspectives, so we’re going to continue the series through this week. Original participants Zoe, Rob, and Ari are stepping back and letting other voices have the floor. Today’s post is from Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter, and blogger at ASParenting. -The Editors —- My favorite Autism “quote” is one we all know too well. “When you know one Autistic person, you know one Autistic person.” Given, there are variations to this, but this is the way I like to phrase it. In my world,…

The Self-Advocate/Parent Dialogues: Intermission

We are going to continue the Dialogues, at least through next week. (The entire series can be found at thinkingautismguide.blogspot.com/search/label/dialogue.) We’ve heard from readers that they’d like to see Dialogues posts from perspectives including self-advocates parenting children with disabilities, late-diagnosed self-advocates, and parents of children with autism. And, as commenter, advocate, and parent Cheri wrote in regards to the Day Five post from Robert Rummel-Hudson: “I imagine that engaging in this dialogue may have been uncomfortable, and I commend every one of you for agreeing to do it. This final post leaves me wanting — hoping — for more. I don’t know about anyone else, but I’m not sensing any closure here.” We don’t have closure. We need to continue the conversation. How? Self-advocate Rachel Cohen-Rottenberg also commented on the Day Five post, with insights as to how she has synthesized and recommends approaching the Dialogues overall (she is not…

The Self-Advocate/Parent Dialogues, Day Five: Robert Rummel-Hudson

We’re hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability. Zoe and Rob disconnected spectacularly last month. If you don’t know the backstory, see Rob’s post, and Zoe’s reaction. Neither is satisfied with the way that scenario played out; they are using this space to attempt a do-over.  Dialogues Day One: Zoe Dialogues Day Two: Robert Rummel-Hudson Dialogues Day Three: Ari Ne’eman Dialogues Day Four: Zoe Robert Rummel-Hudson has the floor again today. All the participants — writers and commenters — have our gratitude. Not every exchange has led to greater understanding, but many did, and that could not have happened without you. -The Editors —-  The world is…