March 4: You Aughta Know This Weekend

#ElmoMom from a fellow autism parent’s perspective (still awful) and a legislative call to action.

This Week in Autism

Trending on Autistic Twitter over the last few hours/days/some time frame I don’t know because I’ve been off Twitter, ElmoMom is about an autism mom who abused her son and then wrote a book about it.

I wish I was kidding.

Elmo mom wanted her son with autism to experience a Sesame Street Live with her son’s favorite, Elmo. Lots of people. Loud. Not the kind of place you’d really want to take a kid with sensory issues like the sort associated with every person who has autism.

This article is about what it’s like to have sensory issues and aversions. Important for those who come to this Elmo mom topic without sensory issues and need context.

Elmo mom prepped for the Elmo event but when she got there, her son was not able to handle it. So she tackles him to the ground and forces him to stay (trigger warning: child abuse from the abuser’s POV). She uses her legal background to refuse a manager’s request to leave and finally her son sees Elmo. I don’t know what happens after that because it’s too difficult to read. I assume he was able to go in and watch the show.

Why would someone write this? The author says:

I am writing this because I hope to educate people about the burden families face when their autistic children have tantrums in public spaces, so next time you witness such a struggle you don’t immediately resort to blaming the parents. I’m also reaching out to fellow parents in pain to remind them to cast off shame, because I believe nothing is more important than getting your autistic children out into the world.

This article is incredibly upsetting as a parent generally, let alone the parent of an autistic child. There are a few problematic choices of terminology, such as “tantrum” instead of “meltdown” and “autism phobia” rather than “sensory sensitivity” (or really many different terms that can be used for the pain experienced by autistic people when exposed to certain noises, smells, tastes, textures, sights and other sense-related input). This video explains the difference between meltdowns and tantrums and the person explaining is actually autistic.

Back to the horrifying article. Here’s how it opened:

What I did to help my 5-year-old autistic son overcome his intense fear of indoor spaces might not have been right or even safe. Doctors didn’t recommend it. The people who witnessed it were appalled, understandably. I don’t suggest this for others.

I don’t like to attack other autism parents because I’ve seen many online who are great examples to the rest of us. But there are a number of memoir writers and amateur videographers who are not good examples. In the name of awareness, not acceptance, they tell their child’s stories in terrible ways, sharing details that are not theirs to share. Elmo mom falls into the parental awareness/Autism martyr category that is troubling. In real life, autism parents often seek out other autism parents. It’s a supportive community because it is focused on doing the best we can for our kids. We are swapping speech therapist recommendations and planning playdates for our little loves.

Call me neurodiverse (I am), but who cares what parents of NT kids think? Who is the audience for these autism parent books? Other autism parents? I can’t imagine there’s a significant percentage of us who would be willing to have a go at publicly abusing our children.

I agree with @NeuroRebel: we must convey to big media companies that publishing autism abuser memoirs is unacceptable.

This Week in Legislation

Make those calls: Money Follows the Person about to go broke. Hope is this money will be in the upcoming omnibus bill but we all know that’s far from guaranteed.

In December, U.S. Sens. Rob Portman, R-Ohio, and Maria Cantwell, D-Wash., introduced the EMPOWER Care Act (S. 2227) that calls for allocating $450 million per year for five years to renew the program.

“Helping people access long-term care while staying in their own homes is a win-win,” Cantwell said in a statement at the time. “Patients prefer it, and it saves money.”

The Department of Health and Human Services report found that for people with physical disabilities, monthly costs to Medicare and Medicaid in the first year after transitioning into the community decreased by an average of 23 percent. For those with intellectual disabilities, average monthly costs dropped even more, by 30 percent.

This Week in Media I Consumed

March 3, 2018 On a Related Note post.

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