Sunday, April 14, 2019

The Autism Debate (Part 2): Enforcing "Normal" Behavior (Podcast)

Continuing our previous discussion of The Autism Debate, last time we asked whether we should be researching a "cure" for autism.

My answer/personal opinion is NO. I wasn't too clear on this in my last post--I was merely stating two different sides of the issue. It is a neurology and cannot be cured.

However, I can understand where cure-seekers might be coming from. All the suffering that comes with living as an autistic person in this confusing world, for cure-seekers, is often pinned on autism as the cause. They seem to think if the autism goes away, so does the suffering.

What they might not realize is that the suffering is hardly ever caused by the autism itself, but by chaotic environments, social ostracization or bullying, repeated gaslighting, abuse, misunderstandings, co-morbid psych/health conditions, and a severe lack of the tangible support they need.

Now that you know my stance, let's move on to the questions I mentioned in my last post:
1. To what extent should we enforce an idea of "normal" behavior?
2. How do we define "normal?" What does it mean to "live a full life?"
3. If we found a cure, would we be curing autism or just the negative side effects?

Today we are discussing #1.
To what extent should we enforce an idea of "normal" behavior?

Personally, I think we should be able to navigate life well enough that we feel capable and like we can thrive. At the same time, I don't believe we all have to act the same way or have the same needs.

When I see an autistic person do a "problematic" behavior (like having a meltdown or not complying), I ALWAYS ask first, "WHY do they do it?" not "how can we stop it?" And never forget that they are human like you. Different behavior does not mean they are somehow less human.

If you want to change a behavior, it really helps to know why it's there. If the autistic person is having sensory overload, it makes sense to me that they would have a meltdown in response. Imagine that everyone is screaming in your ears, flashing lights in your eyes, making you wear clothes made of cactuses and sandpaper, and on top of that they get angry at you for reacting!


If a behavior is the result of the autistic person in distress, it's more effective and humane to allow accommodations (like taking breaks, wearing sunglasses and headphones etc.) and their natural forms of expression (like fidgeting, not forcing eye contact) to prevent worse outcomes like meltdowns, rather than trying to change their behavior only.

Autistic responses are inevitable, but distress can become more manageable if that person learns healthy (and natural!) ways to cope and be allowed to have those accommodations.

If you are worried about the autistic person becoming a target for not acting "socially appropriate," know that it's possible to strike a balance between granting an autistic person basic comfort they deserve, while teaching social and functioning skills they need to get through life.


Teaching self-acceptance is extremely important here. It's too easy to get frustrated with yourself and give up if you view yourself negatively.

Too many autistic adults (including myself) have grown up feeling like we are broken, and that we do not deserve basic comfort, love and boundaries that all humans have a right to. I wish I would have learned about consent and setting boundaries early on, rather than compliance. I was NOT put through ABA therapy (thank goodness) but somehow still learned to be compliant lest I'd be corrected or ostracized.

I found it increasingly more difficult to retreat back to my inner world to recover since I had been repeatedly dragged out to socialize or learn facts I didn't care about, or because God demanded my attention. At some point, I had become a smiling, submissive girl who did what she was told, a people-pleaser who thought her worthiness depended on meeting the expectations of others. (I credit both being on the spectrum as well as my religious upbringing).

I had to learn how to accept myself. No one could teach me this. Not pathologizing autism would have helped me a lot earlier in life. Negative messages about autism rang in my ears: "it's an epidemic!" "they will never live normal lives" "obsessive, repetitive, no empathy."

My parents were overall accepting of my quirks, and yet it still wasn't enough to offset the negative messages and the felt pressure from everywhere (school, friends, job, etc.) to perform at a level not natural for me.

So in the process of learning to balance self-care/regulating behaviors with social and functional skills, always treat the autistic person as an intelligent, equal human. Take their needs, rights, and well-being seriously. Make sure they know they are valuable and that you recognize they are doing their best.


Behaviors that are harmless to the autistic person and other people, like stimming, should be left alone. Stimming is repetitive body movements like rocking, hand-flapping, bouncing one's leg, etc. and it often helps autistic people release energy and manage anxiety, and filter out sensory input. If it's harmful or a disruption to themselves or others (like self-harm, or stims that truly distract them from learning in school), it would be reasonable to try replacing it with another, more subtle stim, or stim toys like fidget spinners or other sensory items. Stopping the stim altogether is just going to make that person anxious. 

Keep in mind that stims involving self-harm (like hitting their head, biting themselves, etc.) is often their way of communicating distress. It is NOT attention-seeking, so do take it seriously--I don't see it as much different a neurotypical tearfully telling a friend "I am not okay" when they are emotionally overwhelmed, besides the obvious fact that self-harming stims are... well... harmful to the person in distress.

It's imperative that this type of stimming IS stopped so they don't hurt themselves, but please follow up with them when they've calmed down and ask what was distressing them. It could give you some clues about how to help. They could be dealing with severe mental illness or bullying, or perhaps they are abused at home or have dealt with abuse in the past and are having a PTSD reaction.

(Aside from a few rare occasions, I've never had self-harming behaviors. So I am drawing from my experience with mental illness and insight from Agony Autie on self-harm, so if  you have any questions on the topic I highly recommend watching her YouTube channel.)


When it comes down to adapting to society, I think it's always good to teach functioning skills. Each person on the spectrum has different needs and abilities though, so targeting realistic goals for that specific person is more productive than trying to use a one-size-fits-all method of teaching these skills.

For example, some autistic people might be able to work, but struggle with the process of attaining a job. I recommend teaching specific steps according to their preferred learning style. And when I say specific I mean specific--personally, I thrive when the steps written down in simplified bullet points followed by elaboration beneath each one. For me, the more in-depth, the better. I want to know all the details to ensure I do the task correctly.

Pictures/visuals can also be immensely helpful, especially for autistics who are visual learners. When I was in middle school, I had my entire morning routine broken down into steps on notecards (one step per card) which helped me get out the door on time. I had a picture followed by text on each card, for example "Get out of bed," "Brush teeth," "Pack lunch," "Put shoes on," etc.

As an adult, have something similar, for specific tasks as well as broad ones. I call them "Routine Cards:"

It's good to encourage an autistic person to work hard and push themselves when they can, certainly. It's also good to be realistic about it.

For instance, I make my own phone calls to handle things like bills I wasn't supposed to be charged, or scheduling doctor appointments, etc., but I need to make them at home on a day off since they are exhausting for me. I also should avoid making calls while I'm driving or cooking or doing other complex tasks since I could get distracted and make mistakes. I pace a lot when I'm on the phone because it helps me focus. 

The important thing is that I am getting things done. What's not as important is how I am doing them, as long as my methods are not too overwhelming to me or others around me.

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