Humans Are Not Items That Are Damaged, They Are Humans

I was reading The Mighty, which for those not in the know, is a news-like blog focused on various disabilities. For the most part, I only keep up with the Autism posts, but they have posts for Down Syndrome, Mental Illness, and other categories too.

Anyways, I was reading the Mighty and they featured an article titled When A Stranger Questioned Why I would Have More Children When My First is Autistic written by Amy Clevidence link here.

Really, I should know better than to read such an article, but I was curious as to from what perspective this article was written. I did not expect what the stranger said, to be as brutal as what was actually said. I expected it to be bad, because any such question is, but here's what the stranger actually said:

“Wait! Let me get this straight. You had an autistic child. You proved you could create a damagedchild, then you intentionally had additional children? Why would you tempt fate like that? Has the level of your selfishness ever occurred to you?”

....

The emphasis is in the original article, and I imagine, probably in the stranger's voice.  Someone, a stranger to this woman, in person, felt that it was OK to call autistic people damaged. And to call the mother selfish! I... wow. I expected something more along the lines of "Why on earth would you want another kid if one was already autistic already had autism (cause people that think like this, will never in a million years use the word autistic. At least, not in a non-derogatory way).

It is never- ever- OK to call another human being "damaged". I am autistic- part of my brain doesn't catch onto social rules, but I do know this much. Just... don't do it.

But, the truth is, even if the stranger had said what I expected him/her to say... it wouldn't have been OK. And as an autistic mother, I don't even have to say that I have an autistic child, to hear things like "Wait, you're autistic and a mother?" or "Why would you want kids if you are autistic?". And only my good friends ask me, "So, are you wanting more kids? When do you think you will have them?" And, really, I could say 'no one' asks me that, because most of my good friends know my thoughts about having more kids, and when I want them. I might get "Don't you have baby fever yet?" But the point is most people, if/when they know I am autistic, will assume that I don't want kids, and that one is enough.

For the record, my ideal is to have four kids, with about 4 years between them. My reasons for this scenario are many, and would distract from this post, but that is my ideal. We'll see if it happens or not.

There is no good reason why a parent of an autistic child should feel like they are doing something "bad" by having a child after one is autistic. Whether that parent is autistic or not, whether the child is autistic or not, the child is not defective, is not cursed, and is a wonderful addition to the human race.

So... if you should meet someone who has multiple kids, the first of which is autistic (or multiple autistics), congratulate them on having so many precious children in their lives, and maybe buy them a wine if they are into that. And next time you see a person with a single autistic child, don't assume they won't have any more kids, or that they think their child being autistic is a tragedy. And when you meet an autistic adult, don't treat them like it's bad that they may want children.

Remember, to be autistic is to be human. We experience life differently, but we are still very much human.

Autistic Communication and Language Choices

First off, let's define communication, and language. Communication is any message being sent or received from one person to another. There's nonverbal communication, such as body language, facial expressions, and miming, and there's verbal communication, which can be sounds like "oh! woah! and ow!" or, spoken language. Verbal communication also includes nuances such as tone of voice, and voice volume. So, communication is a message being sent and received either verbally or nonverbally. It is not necessarily language. Especially when it comes to autistic people, behaviors are a form of communication? Let's see how good your interpretation of behavioral communications are:

You are talking to someone, and they turn to leave.

Your kid touches the stove and starts crying.

A touchdown is made, and the crowd cheers and claps.


Messages communicated:
"I'm done talking to you."
"That hurt!"
"Go team!"


See? You innately understand behavioral communication. Keep that in mind when talking to an autistic person, or otherwise interacting with them.


Now, language is generally what we humans use to communicate. Language is an encoded message, that is delivered, and interpreted based on a standardized set of rules. This can be verbal, nonverbal as well. ASL, American Sign Language- or really, any official sign language- is a nonverbal language. English, and many other languages, can be written down, and delivered nonverbally. And, of course, verbally there's any number of languages: English, Spanish, Cantonese, Chinese, Mandarin, Arabic, Hawaiian... the list goes on and on and on.

For nonverbal autistics, there are a number of choices for communication. ASL can be taught, as we are doing with Ace, enabling the individual to develop language skills. Sometimes, autistics can have poor fine motor control, so ASL isn't the best option for them. That's ok too. Ace is blessed with advanced fine motor control, so we take advantage of that.

There are also communication systems to help autistics communicate. There are Augmented and Assistive Communication systems (AAC) where an autistic might have an IPad that they can type on, or tap pictures, that will then vocalize the message the individual chooses.

 There's the Picture Exchange Communication System (PECS) in which the child flips through cards with pictures/words (developmentally appropriate) to show what they want to communicate. PECS is particularly popular at the toddler and elementary ages.

There's also Rapid Prompting Method, in which the individual can point to a chart showing the ABC's and spell out what they want to say- or, in the case of younger kids, point to pictures that show what they want, similar to the younger PECS, without the exchange of the picture.

And, of course, there is behavior. Crying, clapping, turning away, and dragging people where you want them, are all methods of communications an autistic person may use innately.

If an autistic does sign, please try and communicate with them through sign. Do not insist that they talk verbally. If they talk verbally- great! But ASL IS a legitimate language, and if it works, it works. If you don't know ASL yourself, ask the individual's mom/partner/friend/interpreter (most autistic's won't have an interpreter on hand though) to translate the autistic's responses for you. Remember, though it is definitely fun to communicate in the same language, unless told differently, just because they are using ASL, does not mean that they are not hearing. You can talk to them, as you would anyone else, and they are able to hear, and understand. They'll just answer back in ASL- which is where the interpreter will be useful- so that you will know what they are saying back to you!

Verbal, Nonverbal, and Autistic Language Development

I'm thinking this will likely be the first in a series of posts on autism and language development and choices.

Most people know that autism has something to do with language development. In the DSM-IV, a delay in language development was the single defining feature of High Functioning Autism compared to Asperger's Syndrome. In the current DSM-V, however, there are not multiple autism diagnoses, but instead, all are diagnosed as Autism Spectrum Disorder, regardless of language delay. However, as was historically, a large percentage- but certainly not all- of Autistics present with some sort of language delay as a child, or learn language atypically.

Once a child reaches about 15 months old, and still is not talking about 15 words, they are said to be "nonverbal." Non-verbal simply means that the child does not functionally communicate verbally. Functional language is considered language that can transmit information such as requests. So a 18-month old asking for "wawa" (water) is communicating functionally. A 15 month old seeing a ball, and yelling out "ball!" while, still significant language development, is only labeling the item (assuming that he/she does not want  the ball) and is not functional language.

Ace is considered non-verbal at 2 years of age. He babbles, and likes to say ooo or "woah" or "ow", and can label "cat" and most of his letters, but functionally, he does not speak. He is vocal, not verbal. So if you are under the impression that living in a house with a nonverbal child is quiet... it's not.

He does, however, functionally use sign language. He can even sign "TIME CHANGE DIAPER" which is a new development, but involves stringing signs together, which is developmentally on track for where 2-year-olds should be verbally. So when asked what language(s) he speaks, we say he uses American Sign Language and English, but he's non-verbal.

As stated above, not every autistic child will show language delays. I'm not sure when I started talking, but I do know that my mother said that my first word was "purse". Which, you may notice, is not an easy word to say, and isn't the typical mama/dada. This is the other side of the spectrum. Autistic kids tend to develop language atypically, whether that is identifying nouns like "cat" or "purse" long before "mama" or "dada", or not speaking at all for a few years.

It is very important, however, to remember that this is all about language development. Language is a way to communicate, but it is not the only way. When it comes to Autistics- both verbal and nonverbal- behavior is communication. So when an autistic child misbehaves, he/she is trying to communicate something to you. Perhaps it is overstimulation, perhaps it is that they are in pain. But whatever the reason for the behavior, there is a reason for the behavior. All autistics communicate. You just need to be patient, and figure out what is being communicated :).

Some Thoughts on Errorless Teaching

I wrote this up for some groups on Facebook where autism parents meet. I couldn't find much online about errorless teaching, in the autistic viewpoint. So, I wrote this for that reason.



Errorless teaching is an ABA technique in which the therapist, or adult, presents two options, and does not allow the child to answer incorrectly. By pulling the 'wrong' answer away as the child reaches for it, or by presenting the right option, one way or another, the child is "blocked from answering incorrectly". 

Once the child shows signs of understanding, the prompt is changed to a different level, and the guidance is slowly waned, until the child gets the answer right "all on his own". 

Therapists say it's to avoid the child learning to depend on getting the wrong answer, before going to the right one. They say that it is to avoid teaching incorrect things.

Here's what I see as an autistic, and as a mother watching my child go through this:

When you use errorless teaching, you are telling your child that you do not trust them to get the right answer. You are presuming incompetence. You are denying the fact that your child may have opinions or desires that do not match yours, and that he/she may have no interest whatsoever in the "yellow" because the "blue" looks better next to what he is working on.

See, autistics do tend to be "in their own world" if you want to call it that, and we may hear you say "pick the yellow" but we see you holding out a blue thing, and a yellow thing, and maybe we know what blue and yellow are, but we have an aversion to the brightness of yellow, or are working to our own goal with these pieces. To take away what appears to be our choice of blue, because you want us to pick yellow, is not cool. And, at best, teaches compliance.

I see this anytime this happens with my son. If he is interested in the one they want him to pick, he is rewarded, for what to him is just what he wants. He paid no real attention to the other option. When he doesn't want the desired option, he gets frustrated that he can't get to the option he wants, and will sometimes go into a meltdown.

Errorless teaching does not take into account any of the internal processes of thinking a child may be going through. It just says "I said to do this, and you will do this"

IF this isn't troublesome for you, it might interest you- or not- to know that when you search errorless teaching on Google, a lot of talk about how to teach- or re-teach- people with traumatic brain injury comes up- as well as autism.

Is your child brain-damaged? Do they have an intellectual disability?

Historically, Autism was diagnosed as, and considered to be "lesser brain damage". I do not think, in any way, shape, or form, that it is at all benign to use teaching methods for people with TBI, on autistic children. It reinforces ideas about the autistic brain, that we've worked for years to overcome. Autism is not brain damage, and should not be treated as such.

Hello Once Again World

I never do manage to keep up with blogs, but lets try this again.

So just an introduction, I'm Shayna, a 27 year old autistic mommy of a bouncy and amazing nonverbal autistic toddler, who for the purposes of this blog, I am calling Ace. Because Ace is a freaking awesome name, and anonymity. Matt is my husband, and since his name is on this account too, I'm not going to give him a freaking awesome pseudonym.

Ace just turned 2 years old, and while he does not communicate much at all verbally, has taken to using American Sign Language as taught by Signing Time/me. Ace LOVES his ABCs, and can turn any surface, and any item into a drum or mallet. I have a feeling that music will be in my future. We'll see though :). Oh, and he climbs. on everything. Except playgrounds. Because, really, what fun is it to climb where you are supposed to?

Just getting this out of the way now, I prefer and use identity-first language. There will be many (many) blogposts in the future where I go into detail on why, but that I prefer it should be enough. So I will use identity-first when I am talking about myself, and my son, and the larger Autistic community, and I will enthusiastically agree that person-first is important to those that point it out or argue with me on this fact, and call them a person lacking autism, or person without autism. But my son and I will still be autistic. What's good for the goose is good for the gander, right? (did I use that appropriately? I think I did....)

I'm just going to use this blog to talk about my thoughts concerning life as an autistic adult, living in a neurotypical world, raising an autistic son. Some common themes are likely to be: identity-first language, social justice, Autistic rights, ableism, ABA and other therapies, and developmental milestones. Because those are always fun to celebrate!

I have no intention in raising my child to conform to society, hide his autisticness, or be shameful of his identity. I just want him to be the best autistic that he can be, and to be happy and fulfilled by whatever his life ends up looking like.

Oh, and he is still my little nursling. I'm only slightly less agitated by people insisting he is too old to nurse, than I am people saying I should say he/I have autism.

So yea, that's what to expect from me, and a bit as to who I am.