Some #ActuallyAutistic Advice for #ElmoMum

An #ElmoMum elaboration in three short parts.

Part the first: Background

Part the second: Context

Part the third: Advice (with swearing) [You are here.]

3 – Advice (with swearing)

Disclaimer: This is general advice and is far from a complete list. Most of it comes down to treating your child like a fully functioning Autistic human being, presuming competence, and taking care of yourself so you can care for your child. Every child and parent is an individual and I do not claim to speak for anyone other than myself from my experience, extensive research, and observations.

–Prepare your child ahead of time if you want to take them somewhere new, overwhelming, crowded, or even somewhere comfortable where they go regularly.

How to do this? Talk about what it might be like, help them figure out what supports they might need (will it be loud? consider bringing ear defenders. will it be bright? consider bringing sunglasses.), try to visit a venue ahead of time to scope out the area when very few people are present if you’re going to a very crowded place (like, say, an Elmo concert), and don’t take them to a new place if they really don’t want to go after you’ve done all of the above preparation unless it’s basically a matter of life and death.

–Don’t force your child into what’s essentially a full-time job while they’re in preschool.

Let’s put aside the question of whether ABA is abusive for a moment (even though it is) and just think about what putting a child in any kind of therapy for 20-40 hours a week means for the rest of their time.

It means 20-40 fewer hours of free play time (Autistic children need free play time too!) or being out in nature (something that many Autistic children and adults need in order to thrive).

It means 20-40 fewer hours of observing social behavior of other people out in the real world (or even in the family home).

It means 20-40 fewer hours of reading/being read to, either helping with or observing the work that needs to be done to run a household, interacting with or observing siblings, and a multitude of other things that are beneficial to children in general and Autistic children specifically.

Most importantly, it means 20-40 fewer hours of time that they could be alone and/or developing their own interests. One of my first interests was how many ways I could get wallpaper and other things to shift by moving my eyes in certain ways. I spent countless enjoyable hours staring at wallpaper, books, patterned carpets, etc, and adjusting my eyes in fun ways Thank goodness my parents didn’t have me stuck in therapies for hours on end instead.

Being able to do that was one of the best things about my childhood, honestly. That and reading books. Constant surveillance would’ve been a nightmare for me.

–Don’t lock your children (especially very young children) in their rooms at night.

Nighttime is scary as shit and it can be traumatizing for children to be forced into a state of aloneness at night (speaking from personal experience here). It can trigger abandonment issues, especially if the parent-child relationship is rocky to begin with due to the parent feeling overwhelmed. Children pick up on parental feelings – even, and sometimes especially, Autistic children – and they can often tell when their parent is pushing them away.

Bedsharing isn’t something that works for everyone, but having a child in the same bedroom can help greatly. Our children slept in our bed and then in our room for many years before they were ready to move into their own spaces, but once they did move out, they were comfortable doing so because we had always been there for them in the past when they needed us, night or day.

And I had no idea how commonly accepted this parents locking Autistic children in their rooms at night idea was until I just googled. Holy shit, people! If you wouldn’t like being locked in a room by yourself with no control over the situation then perhaps consider not doing it to other people, okay?

This should be common-fucking sense. Fuck! This is extremely upsetting. I’m going to take a moment to collect myself now.

*deep breath* Okay. Continuing on.

Give them time and Be inconsistent 

Children develop at their own paces. You may be shocked at how many “bad behaviors” children just naturally grow out of as they get older and gain more understanding of the world and as their impulse control naturally improves.

My children have grown out of every “bad” behavior that most people hit their children for exhibiting. My children were never hit and yet…. they grew out of those behaviors just the same way the children whose parents hit them did.

I’m thinking it very likely wasn’t being hit that changed their behavior. I’m thinking it was probably more from the growing up.

Likewise, none of my Autistic children ever went through ABA or any other behaviorist therapies (or even behaviorist parenting). Instead we created a friendly environment for them and gave them time and support to grow up into the best people they could be.

Was parenting that way always easy? Hell no!

It’s still not always easy, but I truly believe that it was and is the right thing to do based on my lovely, non-compliant children who will be amazing adults. They understand how to find the right supports for various situations and they behave well in public when we go because they’re part of the process and are prepared for the situation, not because they’ve been trained like dogs to act a certain way.

Not everyone has the luxury to wait like that with their children, I know, but some aspects of patiently waiting can be used even in families that need to participate more in society than we do.

This approach is simply not often talked about in the context of parenting Autistic children so I want to be clear that raising an Autistic child CAN be done gently and respectfully, given enough time and patience.

–Find support for yourself.

This is so so so very important. I realize that a lot of the things Autistic adults tell parents can sound overwhelming and impossible to do. Society doesn’t support Autistic children in helpful ways any more than society supports Autistic adults. And parents certainly aren’t supported in being gentle or respectful parents even to neurotypical children.

Surround yourself with other people who are trying to raise their children respectfully. Surround yourself with Autistic adults (at least a couple!) which will benefit both you AND your child in a multitude of ways.

–Make sure you get some time away from your children regularly, especially if you’re an Autistic parent because we really aren’t supported by society in any way, whether our children are Autistic or not.

Honestly, I bristled at any suggestions that I take time away from my children when they were very tiny and I don’t regret that, but taking time away as they’ve gotten older has been very essential for both my children’s and my own well being.

So, find people who care about your children and who are willing to trade childcare or pay someone compassionate to watch your children if you can afford it.

[CW: suicidal ideation mentioned next paragraph]

Use your money for THAT rather than for abusive therapies that will basically just force your child to pretend to be “normal” so they can “blend in” and be “productive” members of society as they “live a full life” (by whose definition?) and maybe even secretly want to kill themselves (speaking also from my own experience here) because they’re just utterly. fucking. exhausted by the masking.

And this isn’t to say that teaching children about social norms, etc is a bad thing, but don’t force it and be sure to combine it with plenty of information about self-care, supports, and accommodations (and how to ask for those if they need assistance managing them.

–Find good Autistic parenting information.

The parenting resource list at the bottom of this previous post was thrown together fairly hastily, but would be a good start.

4 thoughts on “Some #ActuallyAutistic Advice for #ElmoMum

  1. Many people don’t truly care about facts and refuse to accept them no matter how they are presented or how clear they are. I’ve never understood that perspective. I’m unable to act as though something is true once the web of knowledge I constantly accumulate rules it out, no matter how strongly I had previously believed it. The things I know and thus the things I believe and the opinions I hold are constantly shifting and have been my whole life. People talk about difficult it is to change their mind about a strongly held belief, and I’ve never understood or related. I have the opposite problem. I struggle to hold to any belief or idea over time. I don’t necessarily need facts to maintain them, since some things are not particularly amenable to facts. But it must at least be consistent with everything I understand and perceive about the world around me. It’s the flip side of what it means to live within my web of understanding and knowledge. It doesn’t just inform the things I can do and achieve. It’s not something I turn on and off as needed. It’s with me every second, shaping and forming everything I understand about the world around me.

    I’m impressed by the research team at the University of Texas which has kept coming back with new reports, studies, and meta-analyses on the impact of hitting children. The latest one in 2016 addressed criticisms that they were mixing ‘abuse’ in with ‘spanking’ so they controlled strictly for acts consisting of the bottom or hand only with an open hand and nothing else. That’s a much more strict definition of ‘spanking’ than almost any human being on the planet uses. And they still found in their massive analysis that hitting a child *only* correlates with increased negative outcomes over time.

    That’s the first thing I noticed about ABA papers. The studies weren’t randomized. They weren’t well controlled. And they measured various things without actually demonstrating a connection between those things and ABA. I haven’t found a copy, but the single randomized, controlled trial of ABA to which I’ve found a reference showed no measurable benefit. And that’s what I noticed in myself, in other autistic adults, and in case studies such as those in Neurotribes. We develop differently and sometimes at different rates than typically developing children. Setting aside for a moment whether or not the goals of ABA are good, it’s not clear ABA is actually doing anything more than we could learn over time.

    The ABA gold standard is their so-called ‘optimal outcome’. I’ve read multiple studies now and that term simply means the person can no longer be perceived as autistic by a clinical observer watching them interact with others. Again, setting aside whether or not that outcome is a positive one and without discussing the pressures we faced, a number of us got to basically that same place on our own with no formal therapy at all. And most autistic children learn to cope and adapt in their own way to one extent or another in the absence of “therapy” over time. Like spanking, ABA needs to prove both that it doesn’t inflict harm and that it provides some benefit. Also like spanking, I believe it would fail both tests if actually measured. But it isn’t being measured. It almost never has been. Every study I’ve found has been deeply flawed in its assumptions, structure, and implementation. And if it’s going to be presented as a standard of care, then ABA needs to be subjected to the most rigorous randomized controlled trial standards. Frankly, if its practitioners cannot meet that standard of evidence or are unwilling to do so, then they should be dismissed as peddling junk science. I may not be a scientist myself, but I come from a family of scientists. And everything I read about ABA feels like the sort of poorly constructed research papers my father used to complain about having to peer review.

    But many of these parents can’t even see the child they have. They are consumed by the imagined child they wanted.

    Liked by 3 people

  2. Your post is a great response to what was apparently said in the book (I didn’t read it). Insightful advices for parents who are struggling and don’t seem to be taking the appropriate route (with a respectful tone too), from someone who knows first hand, is an important and positive contribution to the discussion!

    Liked by 3 people

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