Proceed with Caution: Stem Cell Clinical Trial for Autism

Emily Willingham www.emilywillinghamphd.com Recent headlines have trumpeted an FDA-approved clinical trial of cord blood-derived stem cells for autism, involving 30 children and two i.v. infusions of cells from each child’s own banked cord blood. The stated rationale is a link between inflammation and autism, but I, for one, find that rationale spurious. The inflammation-autism concept found its footing in part thanks to a study that appeared in 2005 [open access] and described findings linking inflammation in the post-mortem brain and autism. The researchers, based at Johns Hopkins, had examined donated brains from 11 people with autism, six of whom were children, and in particular found evidence of what they called an “inflammatory process” in the cerebellums of brains from autistic people. The autistic group in this study was highly heterogeneous in terms of ages, causes of death, and the presence of epilepsy. The Hopkins work and a handful of other…

Autism & Back-to-School: What Do You Wish You Knew?

Does back-to-school make your stomach do backflips? Ours, too. So we asked some of TPGA’s contributors what they wish they’d known — as parents, or as students — about the back-to-school season. Here’s what they shared: Mir Kamin wouldashoulda.com I knew it was okay to press for what my kid needed, but it took me a really long time to learn that it was also okay to admit when it’s time to stop trying to hammer your square peg into a round hole (and go find a square hole). I never in my wildest dreams expected to be a part-time homeschooler/unschooler, and yet it turned out to be a wonderful solution for our family once I gave up on the assumption of “making it work” with public school. Mind you, classroom accommodations provided by my son’s IEP worked for a while … until they didn’t. I’m so glad I finally…

Starting Third Grade

Judy Endow, MSW judyendow.com Too much new                   for back to school                                     is why I just                    don’t like it,                   though                                      each new thing                                               all by                    itself                                                           is entirely                                                                             acceptable. New shiny shoes                   I do so love                                      new ribbons in                my hair                   a freshly pressed                                      brand new pink                  dress                                                   Oh       …….                                                            ain’t I                                                                             debonair! My satchel packed                   with all new things                                      with all the stuff I                need                   sits on the floor                                      next to the                    door                                                just waiting                                                            for me                                                                             to leave! New class lists                    posted on the                 doors;                                      the students find their                names.                      They take their                   seats                                      and wait to                   see                                                   what will                                                         this brand new teacher                                                             say! “Unpack supplies.                    Get settled in.                                      My name is on the                   board.”                    On and on…

Scarred

Kate We are scarred, we adults on the spectrum. We are scarred, both inside and out. Our lives are twisted paths littered with diagnoses. We have fought for years to get to where we are now, and still it isn’t good enough. We are scarred. We went to schools where there was no help. Sometimes we were shunted into special education rooms, or to the behavior-problems division. There we were taught that we were ‘stupid,’ ‘retarded,’ that we would never amount to anything. We were accused of cheating when we read so well but couldn’t write an essay, drew complex diagrams yet failed math. We were denied entry into higher-level classes because we didn’t appear to be smart or participating in class, and our minds thirsted in vain for more knowledge. We went to therapies, all sorts of therapies. Look at this ink blot, what do you see? I see…

I Can Do RAD All By Myself

Amanda Forest Vivian adeepercountry.blogspot.com I was born in 1988 to a rich white family on the East Coast of the United States of America. For those keeping track, I was diagnosed with PDD-NOS when I was nine and Asperger’s when I was fourteen — but all that really tells you about me is that I was born in 1988 to a rich white family on the East Coast of the United States of America. By the time I was 18, I had been undiagnosed many times by people both qualified and unqualified to do so; and after a brief flirtation with Autistic culture I soon succumbed to the implications of the types of praise and encouragement young disabled people often receive. When we succeed we’re told that we’re not really disabled or that we’re different from other disabled people. The idea of being a real average disabled person becomes unacceptable.…

In Case of Emergency

Jennifer Byde Myers jennyalice.com iEmergency+ application Create your own lock-screen with important information. I just got the paperwork from Jack’s school to set all of our records straight for the next school year. I know… already, summer is flying by. I scanned through the printed information I filled out from last year and got stopped at that emergency contact section again. It is a list that really defines the borders of my close-knit community. In an emergency, who can care for your child with special needs? Most of the time life goes along just swimmingly, but things happen; cars break down on the way to pick-up, I broke my leg once, we live in earthquake country. I have a collection of people that I know can take care of my child and keep him safe. It’s a short list, and I wouldn’t ask many on that list to even babysit…

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Someone Who Moves Like You

Julia Bascom juststimming.wordpress.com Buckle up kids, because this gets long and personal. So, a long time (~seven months) ago, in a galaxy far, far away (rural New Hampshire) there lived a sad little girl (or KICKASS ADULT) named Julia who just so happened to have a friend named C. C and Julia had spent the past several months talking too much altogether about the TV series Glee, and C had begun to push for Julia to add a second show to her plate. Some brightly-colored sitcom about derelicts going to a community college. And Julia was skeptical, but C was persistent, for she knew that if Julia liked the first two minutes, Julia would have a new favorite show. See, C knew something that Julia did not. C knew that Abed Nadir existed. Now, there are a couple of things you, gentle reader, must know about Julia in order to…

Passing: How to Play Normal

Larkin Taylor-Parker iamthethunder.tumblr.com I look like someone you might trust to hold the spare key if we were neighbors. We could eat at the same restaurant or cross paths in the grocery store. We might forage the same yard sales. I look like I could be someone you know. You might not believe me if I told you I was diagnosed with Asperger’s syndrome at age six. Unnoticed, I often overhear your discussions on what to do with us. I have heard your opinion on DSM changes. I saw your puzzle piece tattoo. I listened as you equated my label with violence, called people like me “unemployable” claimed it is irresponsible of us to have children, suggested we would be happier in institutions. I heard your retard joke. You never guessed an autistic might be listening. I look “normal.” That does not make me part of the over-diagnosis epidemic if…

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Coming Out Autistic at BlogHer

Jean Winegardner @stimey So I am at BlogHer. And it is crazy and wonderful and overwhelming and fun and some of my favorite people are here and I have a lot to say about it and photos to post, but I have something rumbling around that I have to get out. I’ve been thinking a lot about my own autism at this conference. Partly because of my social and sensory issues, but also because autism is so central to what I write about. When people meet you at BlogHer, they ask what you write about. I usually say, “I write a humor blog about autism and rodents,” partly because it’s true and partly because it’s funny to see people try to digest that information. I usually follow up with, “I have a son with autism.” This year, however, when I’ve said that, it has felt less honest. This is because…