Our Recent Study on the Overlap between Autism and Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders

Science Over a Cuppa

Although much of my research efforts to date have focused on the genetics of autism, over the last year or so I’ve turned a significant part of my attention to a particular group of connective tissue disorders (CTD) and their overlap with the autism spectrum. The CTDs I’m referring to are known as Ehlers-Danlos Syndrome (EDS) and the closely-related Hypermobility Spectrum Disorders (HSD).

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To be frank, much of my interest in this area has stemmed from my own experience and recent diagnosis with an HSD, which has put me in contact with a number of fantastic online support communities on Facebook for EDS/HSD and its comorbid issues like postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS). In coming to know these communities and learning from their vast stores of knowledge, I also began to notice that there was a lot of talk about autism on…

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Why I Don’t Recommend Floortime

Erin Human

In many conversations about autism therapies, I’ve seen Floortime recommended as an alternative to ABA (Applied Behavioral Analysis). I’ve frequently spoken up in those conversations to caution people about Floortime, giving my elevator pitch for why I don’t recommend it. That elevator pitch/TLDR version goes something like this:

Though the real-time practice of Floortime can be a much kinder therapy with some aspects that can be beneficial to autistic children, the core concept and underlying philosophy are still highly neuronormative (holding neurotypical standards as the norm), biased against autistic development as equally valid, and include some outright harmful techniques.

I’ve long wanted to write a full blog post reviewing Floortime, because my critique is a bit nuanced and I completely understand why people would find Floortime appealing based on a cursory description of the practice. I’m also guessing that people have seen or participated in Floortime sessions that seemed innocuous…

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On becoming disabled / politically disabled

Liminal Nest

[TW: this post discusses medical trauma]

There are a lot of forms I have to fill out about when I “became” disabled. These are government forms, and they relate specifically to when I officially became unable to produce “substantial gainful activity” and a lot of other very complicated things. I am so used to having to produce this number for bureaucracies and on forms and every time Medicare asks me something that I can spit it out (mostly) without thinking, unless I have aphasia in which case it takes me longer to come up with the words.

Aphasia me can’t come up with the words for the year, so I have to work around them. I was twenty. I was born in another year, so if we add those two numbers together, we get the year. It was autumn. I look at someone near me, eyebrows raised. This…

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Review of TO SIRI WITH LOVE by Judith Newman

elizabethroderick

I’m an autistic author, and I urge you to read the critical reviews written by autistic people before you buy this book. Even if you do decide to buy it, it’s important that you know that autistic people have agency, feelings, intelligence and inner life…because Ms. Newman portrays us as thoughtless, helpless beings with no empathy.

I borrowed a copy of this book from a friend, so I could read it and opine on the controversy without financially supporting an author I’d heard was horrible to autistic people. However, Amazon is now not allowing reviews by people who don’t have a verified purchase through Amazon. I currently live on only a few hundred dollars per month (on most months), but I purchased a copy just so I could leave a review on Amazon. It is so important that autistic people endeavor to make themselves heard on the issues raised in…

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as you are

“‘as you are.’ says the universe.
‘after…’ you answer.

‘as you are.’ says the universe.
‘before…’ you answer.

‘as you are.’ says the universe.
‘when…’ you answer.

‘as you are.’ says the universe.
‘how…’ you answer.

‘as you are.’ says the universe.
‘why…’ you answer.

‘because
you are happening now.

right now.
right at this moment

and
your happening
is beautiful.

the thing that keeps me alive
and
brings me to my knees.

you don’t even know how breathtaking you are.
as you are.’

says the universe through tears”

 

—Nayyirah Waheed, “as you are | you are the prayer” (Nejma)

in this time for new year’s resolutions, let us take a moment to remember how revolutionary it is to know we deserve love. unconditionally. right now, as we are.

may we all feel this profound freedom someday.

happy new year

Tolerance

There is no love in tolerance. Tolerance is inequality.  Tolerance says, ‘Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on.’

/Amythest Schaber

 

I want to say something about two sides of tolerance.

Tolerance in the case of minorities- “live and let live”- is an incredibly low bar, with an inherent implication that those lives could be disallowed just as quickly and easily.

Tolerance of minorities is not enough. Anything less than acceptance and full fellowship is a basic denial of their humanity.

I say this and yet I will turn right around and soundly condemn a nazi. I am not going to tolerate nazis. Why not? Because nazis are not marginalized, oppressed, dehumanized; they are the marginalizers, the oppressors, the dehumanizers.

Condemning a nazi isn’t denying their humanity; It’s condemning nazism. It’s asserting that they don’t have the right to deny the humanity of anyone else. It’s the same with other, similar forms of oppression, not just nazism.

Tolerance towards those who are merely different from you is a special kind of apathy and neglect; tolerance toward those causing and seeking to cause active harm is complicity in that greater harm.

Toleration in some cases is thus this luke warm absence of conviction that other people (a minority group) have human rights, and in other cases it is outright sympathizing/ support/ enabling of harm towards such a minority.

If you’re tolerant of nazis, you’re a nazi sympathizer. If you’re tolerant of ableism, you’re supporting the oppression of disabled people. If you’re tolerant of rape culture and sexual harassment, you’re enabling rapists.

So please think twice when people (esp leaders) call for tolerance.

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And just to be clear, tolerance is always performed by the privileged/ dominant/ majority.

To say that a marginalized/ oppressed/ minority should learn to be tolerant, or that they do/don’t tolerate X, is to say the minority should learn to put up with their situation, or that they do/don’t put up with certain behaviors.

Minorities don’t “tolerate” the majority. They don’t “allow” the majority to do anything. They simply don’t have that kind of power. They have no such choice.  Tolerance is not the right word here.

A minority group may have power over another minority, but in that case, they’re not acting on their own as a minority themselves.

(I mean,  the LGTBQIA+ community itself discriminates against bi people- for one example- sometimes.  This is a case of certain lesbian, gay, etc members identifying with the non-bi majority against the bi minority.)