Quotes about Autism (Part 2)

I'm on a journey of learning-about-autism.

Below are quotes about autism. Some validate what I'm thinking. Some open my mind to new things. Some annoy me. Some make me angry.  

For a better idea of what the hell I'm doing here and why Part 1 will explain things) 

Note: If I have no comments about a quote, it's probably because I agree with it and don't have anything valuable to add.

1. From: If You Can Use Social Media You are High Functioning or Have Mild Autism by David Gray-Hammond :

But functioning labels are a myth. They harm the person being deemed “high functioning” or “mild” by neglecting to acknowledge their struggles. They harm the person being deemed “low functioning” or “severe” by neglecting to acknowledge their ability and humanity.

I think when people talk about functioning, what they're probably really talking about is how obvious is our autism. Are we so visually autistic that people can tell as soon as they see us?  

Does someone need to have a conversation with us and then they know?  

Would it take several get-togethers for our autism to be revealed?  

Would someone have to know us for years?

Might our autism be so hidden that even those closest to us don't see it?

 I think often people care more about how we're behaving than how we're feeling. It's more about what we show than it is about what we hide.

Though I think what I'm talking about here is less about professional diagnosis and more labels given by friends, family, classmates, neighbors, coworkers, strangers we run into, etc.  

2. From: The Crossroads of Being Autistic and Queer by Autistic Science Person:

Of course the assumptions come in first, like “You must be very high-functioning!” (trying to give me a compliment), and “Well, you don’t look autistic!” (also trying to give me a compliment). 

I can very much relate to this. I've gotten the high-functioning comment...meant as a compliment or to be reassuring. I didn't take much offense, because I was feeling so relieved, so validated that the person seemed to agree with my self-diagnosis in the first place. I really expected to get more resistance from them. 

3. From: 5 Million Grant Awarded to Make Autistics Mask in Job Interviews by Autistic Science Person:

The reason we can’t do well on interviews isn’t because we aren’t trying hard enough to pretend to be neurotypical. It’s because the interview process itself is stacked against us, almost as if to weed us out by default.

What else are interviews for except to make sure that we're neurotypical enough?  That we're not too awkward or too shy.  That we won't make our coworkers, or the customers, uncomfortable by being too weird.

I think there are some jobs that, by nature, are better suited for neurotypical people. And for those jobs, it makes sense to have face to face interviews.  But for other jobs, I think other things could be tried such as portfolios, observations, written interviews, etc.  

4. From the same: 

Many neurotypical people refuse to assess their own sensory system, and how maybe they could get used to a quieter, slightly dimmer environment for once. Maybe they can change. Maybe they can, just once, consider how exhausting it is to be told, over and over again, that you are the problem.

I think it would be great to write a story in which autism becomes what's typical, and the not-autistic children are put into therapy to change them into acting more autistic.  

5. From: Toxic Positivity, Gaslighting, and Tone Policing Autistic People by Aprenderaquereme:

In therapy and education, so many times children are told to “use your words,” which has a problematic background. The message that sends is, “Adults won’t listen to you if you show your most overwhelming emotions.” This is even more problematic for autistic people, as we do not always have access to spoken language, we have no choice but to give up in our difficult moment.

In my time as a preschool teacher, mother of a small child, and aunt, I am guessing I have said, Use your words. 

The underlying meaning is to communicate with our voices instead of our fists, feet, a sharp object, etc.

I can now see why it could be problematic. 

I don't think it's definitely a problem for children who can speak well...or who can use sign language or write.

I think it definitely is a problem if what the adult is really saying is, use your words and make sure the words show obedience, reverence, and an attitude of positivity.  This is hard to do when you're scared, angry, overwhelmed, feel threatened, etc.  

6. From: Sixteen Year Old Killed by Restraint. It's Time for Comfort Over Control by C.L Lynch:

Perhaps the most aggravating and frustrating aspect of these horrific deaths is the fact that they so often occur at specialized facilities which boast of being specially equipped to handle students with behavioral difficulties.

Often using terms like “positive behavioral support” or “behavioral health,” these schools claim to have highly-trained staff who are skilled in serving students with behavioral difficulties. They list restraint as a method of “last resort” to protect the safety of other staff and students.

And yet, every time this occurs, the description of the incident never remotely seems to justify the level of force being used. A 13-year-old spitting does not appear to be a “last resort” type of incident. Nor does an autistic teen who wants to keep playing basketball. Or a hyperactive seven-year-old unable to hold herself still. 

7. Also from the above: 

For example, Vancouver-based Dr. Vanessa Lapoint, a child psychologist and author of Discipline Without Damage, has advised against using reward systems in helping children manage their behaviour. Increasing the consequences of behaviour that they might not be able to control can result in the loss of hoped-for rewards, which is, in itself, punishing. 

Wow. I never saw it put that way. But it makes a lot of sense.

I can relate to this as a parent. 

Once someone has the hope of having something, denying them what they had hoped for is probably just as painful as taking something away that they already had.  

In the best situation involving rewards, the child behaves the way the adult wanted them to behave. The child gets the reward.

If the child doesn't behave, the hope is that the adults will have the strength to withhold the reward. The child is disappointed and a little sad but learns their lesson and plans to try harder to achieve the award in the future.

The reality is often that the child is absolutely devastated. They cry. They scream. They may become violent or destructive. If the adult has a normal or above-normal amount of empathy, the whole process is likely to crumble.  

Some adults have the personality that's needed to pull off the whole reward and punishment thing.  They are good at standing their ground, making good on their threats, and withholding unachieved rewards.  

Other adults (like me) are really bad at it. We have the skills needed to offer the possibility of a reward or make threats of a punishment. But we fuck it up when it comes to the whole execution step.  

I have my doubts, though, that being good at it makes someone a better parent, teacher, grandparent, caretaker, etc.  I also doubt that it extinguishes the undesired behaviors.  Short-term? Maybe. Longterm with negative mental health consequences?  Also a maybe.  

Being bad at it, though, is also not going to lead to positive outcomes.

All in all, it's probably best to avoid reward and punishment discipline as much as possible. OR at least save it for situations where it seems likely the child will succeed. 

8. Also from the above:

and that means you need flexible role models who understand the child’s abilities and focus on soothing the emotions, not controlling the behaviors. They insist that you need to build emotional intelligence and emotional management skills… not reward and punish outward behaviours over which the child often has no control.

Yeah. That's a good idea.

9. From Yo Samdy Sam's video on Autism Comorbidities:  

About depression and anxiety, she says:

I've had periods of my life where I've been really depressed, and I've had periods of my life where I've been extremely anxious; acutely anxious. You know the sort of fear.  But all through my life, there's been a low-lying anxiety and depression, which I don't know if it's enough to count as an anxiety disorder.....

But I also do think in some ways that it is a natural response and a rational response to living in a world that is not made for us and is actively hostile to our needs.

And I don't know whether that is a controversial opinion or not. I think it's rational to be depressed sometimes. If you watch the news, and you see things; see the state of the world, it can make you feel very powerless and depressed. 

This is very much in line with my way of thinking about depression and anxiety. And from my experience, it is VERY controversial.  

I think the medical model of depression and anxiety is very dominant in our society, and you can get a lot of hate and anger if you veer off that course.  

10. From: Culture and Politics or Why a Neurodiversity Paradigm is Left of Center by Michelle Sara:

Finally, stop forcing your personal value of independence on them; the ability to live independently is not a universally-held value, and I’m tired of people trying to justify their eugenics-like opinions about autism by implying that a life without independence isn’t worth living. Many disabled people who will never have independence have written on this topic.

This emphasis on independence is a conservative value, whether we acknowledge it or not. The idea is that if you can’t be responsible for yourself, then someone else has to be responsible for you; you’re a burden on society rather than a working cog in the machine.

11. From: On Autism and Intelligence Language and Advocacy by Terra Vance.

About the word "Disability", Vance writes:

In disability circles, it simply means that a person has a need and a right to accommodations because the world is not designed for them. It means that they require support or reasonable adjustments to environments, not that they are useless, incapable of achieving, or less human.

12. Also from the above in regards to the idea of functioning labels in autism.

With autism especially, the degree to how well someone functions is largely depending on the social context where an autistic person exists. If a workplace fails to make sensory accommodations, the most skilled and talented employee in the workforce may be completely unable to work there at all.

I just want to say that I've wasted about two hours writing personal stuff about my own experiences; than deleting it.

I don't know.....

I'm just wanting to share my pain and frustration. No, not about autistic.  I mean about all this writing and deleting.  

Actually....I think I'm going to stop this post here and stop doing these posts.

I thought it was a good idea, and I'm kind of glad I tried it.  But I feel it's causing me more stress than...well, anything very positive.

First of all, I find myself reading in pursuit of cutting, pasting, and responding. And in a way, I think right now I need to do more reading, understanding, and...privately reflecting on my own experiences.  

I think a lot of my blog is thinking aloud and confessing.  I'm not sure if this is the right thing for me to do at the moment.  

The other thing is, I worry that these posts are difficult and not-pleasurable to read.  Is it too disjointed with me jumping from quote to quote?  

I'm not sure if the quotes I'm sharing are as powerful, as they feel to me, when taken out of context.  

Shit....

Well, now I've read over my post so I could hurry up and post it.  I kind of like what I wrote.  Well, duh. Of course, I like it.  Otherwise, I'd just delete this instead of reading it over/proofreading.

I still feel it's probably too disjointed for most people to enjoy or learn from. But there might be a few people who find value in it.

If anything...future me will appreciate it.  Probably when I'm like 70, I'll really love looking back and reading this.

I think what I need to do, though, is slow down.  I was going slow at first...taking my time.  With the last post, I did well with that.  Now I've kind of gone downhill.  Reading too fast...almost skimming sometimes to find quotes I'd like to put in my blog post.  

With writings that I ended up quoting from, I did read more slowly and carefully.  But there are essays and articles that I skimmed through with the attitude of, Nah, I don't think I'm going to want to share anything from this. Skip!

I don't want to do that.

Anyway, with all my rambling...this is already long.  So I think I will end THIS post here. And I will maybe start a third post. Hopefully it won't be finished for several weeks because I'm taking my time——  not rushing, not skimming, not pouring my heart out; then deleting.......

Read my novel: The Dead are Online