Category Archives: Uncategorized

Civil Rights for Nonspeakers — Ido in Autismland

The traditional term for not speaking is ‘dumb.’ That says it all. If someone can’t talk then they are ‘dumb.’ I am dumb, apparently. The thesaurus offers these synonyms for dumb: among them mute, speechless, silent, and then fifty additional synonyms for stupidity, including the colorful pinheaded and dim-witted. The bias equating intelligence with speech…

Civil Rights for Nonspeakers — Ido in Autismland

SHE’S OUT!!!!

After six months in three different psychiatric hospitals, my darling daughter is finally out and living at home again. She still suffers from PTSD (made much worse by the hospitals themselves), but at least she is able to be with her family and her dog, see her friends, and breathe the open air.

We are SOOOO happy!

Six Days in the ICU

I mostly write about my older daughter–the one with autism–in this blog.  But younger daughter has her problems too, and last week they became acute.  She had been feeling off for about two months, with a persistent cough and fatigue.  But then about ten days ago she called up and asked me to take her to the E.R.  She was extremely pale and her tongue had a green (!) tinge.  I got her there, they took one look and started the process of admitting her to the hospital.  She was extremely anemic, and had a startling low number of platelets in her blood.  Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).

The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood.  She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.

After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus.  Once they started treatment for that, there was an immediate improvement.  She didn’t have to have lots of pain medicine and she could eat without vomiting.  Last night she was visited in the ICU by a therapy dog.  She was able to get out of bed and hug him, which made her (and us) burst into tears.

In short, the chaos continues here in the Midwest.  But what a relief to have her feeling better.

 

What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition — We Always Liked Picasso Anyway

I have talked before about the differences between “autism awareness” and “autism acceptance” but I will give you the (somewhat) shorter version real quick: “Awareness” is lazy. It requires no action. It is rooted in ableism and done for non autistic people at our expense. “Awareness” is self narrating zoo exhibits and violations of privacy…

via What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition — We Always Liked Picasso Anyway

Autism: When Awards Can Be A Negative Thing… — Inside The Rainbow

There was recently a thread on Twitter started by Claire Ryan who tweeted: “When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack. Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking […]

via Autism: When Awards Can Be A Negative Thing… — Inside The Rainbow

What Does This Say About ABA?

Brilliant older daughter recently attended the Association for Behavior Analysis International’s annual conference.  This is an odd convention, because about more than half of the participants are ABA practicioners, who work with autistic childfen, while many of the rest are people who study animal behavior.

A. was presenting the results of her research on dog behavior, and the response was tremendous!  People were so impresssed that they asked whether she was a graduate student, a post-doc, even a professor–whereas in reality she is only a sophomore in college.

However, things changed after her well-meaning mentor disclosed to all her acquaintances at the conference that A. is on the autism spectrum.  At that point, people began to walk up to A. and ask if she was that “sophomore with autism” they had been hearing about.  She found this very embarrassing.  But what really infuriated her was the difference in reaction between the animal researchers and the ABA practicioners.  The former asked if she was “that sophomore with autism,” but then they continued to discuss her research and pose challenging questions (which she enjoyed answering).  The latter, on the other hand, started talking down to her, and even ignoring her completely, directing their questions instead to her mentor.  What does this say about their attitude towards autistic people–can they not even imagine the possibility of a smart, articulate autistic who might be able to teach them something?