Inclusion Doesn’t Need to be Earned

Inclusion doesn’t need to be earned. I’ll say it again: Inclusion doesn’t need to be earned. Every person, regardless of neurotype, disability, communication preferences, or sensory needs has a right to be a part of their community.

I’ve heard educators say that they believe in inclusion but “behaviors” are a barrier and need to be extinguished so a child can be included with their peers. Alarm bells start sounding in my head. There’s no “inclusion except for that loud, stimmy child who won’t sit still at the table”. That is still segregation. It’s not “inclusion for ALL” if some of the kids are still made to earn the right to be included. I’m genuinely astonished when professionals juxtapose a pro-inclusion system with one that demands that students meet certain behavioral criteria first before being permitted to learn alongside their peers.

Inclusion is not something a student earns by fitting into a perfect mold of neurotypical behavior. Inclusion isn’t something shiny that you’ll get if you can just stop stimming so much, getting frustrated so easily, having sensory meltdowns, etc.

What I hear when people say things like this is that my child is not permitted to be a part of his community. That he needs to be kept hidden away so he doesn’t disturb or disrupt his peers and teachers. Rather than devising a way to meet his needs and help him access his education, people want to compliance-train him into a quieter, more still child who will sit on the rug nicely, not vocalize, and not rock back and forth if he is to be taught alongside his peers.

But that wouldn’t be authentically HIM. He’s been rocking back and forth and making happy sounds since he was able to sit up. Before that, he kicked his legs or jumped in the jumperoo non-stop. Even in utero he moved so much that my stomach looked like there was a space invasion happening. This is how his body moves. How it *needs* to move. There is no compromising possible here.

The pervasive idea that people need to behave “normally” is a problem because it furthers ableism and the view of disabled people as “other” and “less than”. When you keep children with disabilities segregated and hidden away in separate classrooms, peers don’t learn that it’s okay to be different and to think and communicate differently. They miss out on chances for friendship and understanding and kindness.

And not just the pitying “be nice to them because their life is tragic” or “be Tommy’s helper because he doesn’t know any better” type of kindness. The genuine reciprocal friendship and respect type of kindness.

Without true inclusion, peers won’t learn HOW to talk with and interact with people who communicate differently. No one is showing them what to do to navigate social situations that might arise or how to make recess games and activities accessible to all of the students.

If kids are only catching a glimpse of my son at lunch or on the playground, they aren’t seeing him making insightful comments with his communication device or talking all about the dwarf planets or making hilarious jokes. Lunch and recess are exciting and fun and are times when he doesn’t choose to use his communication device. Will the other kids make assumptions that he doesn’t understand what anyone is saying and isn’t paying attention or is “in his own world”? If they only get to see him from afar and don’t get to have genuine interactions across all settings, this is the likely outcome.

My little second grader is going to grow up. If he grows up segregated from peers because he hasn’t “earned” the right to be together alongside them, how will he be a part of this community? Our disabled children need to be included in schools and treated as valuable members of the school community, just like every other child.

I take my child out in public. We go grocery shopping, to the town carnival, to the playground, to sensory-friendly activities nearby, and more. We are out in the community to the extent that we can be right now, given our children’s ages and abilities to handle outings. It would be lovely if people in the community knew us and knew our son and the other children in town knew who he was and what his story is. Alternatively, they will stare, comment and mimic behind his back, pity, or think of him as strange or tragic. This is not acceptable. He’s a fabulous, funny, smart, kind boy and the community will be better off with him as a valued part of it!

Inclusion doesn’t need to be earned. The goal cannot be to extinguish parts of a child that differ from the norm and don’t fit into the mold of compliant, quiet, table-ready learner. The stakes are too high.

*A note to those who know us personally – this was written over a year ago and never published so is not a direct response to any current situation.*

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We need to do better.

Why is it so hard to refuse ABA? Why does it require so much effort to ensure that school is not pushing to use harmful and disrespectful tactics with my autistic child?

When I try to explain our views on ABA I am met with almost…pity…and certainly condescension that I must not understand what ABA is. Like I am some sort of pitiful, misinformed extremist just going off of hearsay or something. They hold back their scoffs (but I read their facial expressions as clear as day) and try to educate me on what they think I don’t know.

“ABA is not like that now”.
“It isn’t how it used to be.”
“There is ‘good ABA’ and ‘bad ABA’.”
“We don’t use aversives anymore so it’s OK now.”

“We just break things into steps,” they say.
“Breaking things down into steps is not ABA;  that’s common sense and good teaching”, I say.
“Yes, it is ABA”, they say.

(I’m unsure how they think they can try to tell me that one tool used in the entire practice of ABA “is ABA” as if it is not also those other things that I find tremendously problematic.)

I tell them I’m very active in the autistic community and have friends and acquaintances who have been through ABA or are former ABA providers themselves but have quit and regret their former profession. That I’ve read many writings by autistic people outlining the problems with all ABA and its ill effects.

I tell them I’ve read Ivar Lovaas and B.F. Skinner and tons of other literature written for ABA therapists and educators using principles of ABA. I tell them I’m well educated on this topic and very intelligent. I’m trying to get it into their head that this is not an issue of misunderstanding.

I tell them how ABA is compliance training and grooms children to be taken advantage of because they are taught they cannot say no. They are trapped in a room for therapy where they cannot escape the demands until they do whatever the adult tells them to. Sometimes for forty hours per week.

I tell them that ABA teaches children not to trust their gut instinct and to question their own judgement because they are constantly told that their experience is not true or not right. That things that give them pain are not actually painful. That the sound “isn’t that loud – hands down”, or the play-dough is fun, “touch it, it doesn’t hurt”. Except that it IS loud and it DOES hurt them.

Behaviors are frequently seen as attention-seeking and manipulative instead of as an expression of distress at something painful or uncomfortable or overwhelming. When a child’s gut instinct tells them something is wrong and then they are told everything is fine, how can they learn to trust their own judgement?

I haven’t even had a chance to get into the fact that so many people have PTSD from ABA therapy. No matter what I say, they still think that their ABA is OK. That they are not one of the bad ones. That I should be OK with them working with my child because they “just want him to be the best learner he can be”.

Now they think that since they explained that they do “good ABA” that I will give them carte blanche to work with my son. They say they want us to have a mutual trust now so that they can move forward and do ABA with him. Absolutely not. That’s not how this works. That’s not how any of this works.

I am enraged that I’ve come across so much resistance when trying to protect my child. That I am treated like I’m just trying to be difficult for not wanting my gorgeous six year old to be taught that he is broken and wrong and makes people uncomfortable and must change who he is to be okay. I’m irate that they refuse to listen to autistic voices and their allies who are shouting that ABA is harmful and in no way okay.

We need to do better.
We need to.
Our autistic community members’ happiness, safety, and even lives depend on it.

 

*Note – I wrote this in the winter. Circumstances have improved since then but I think it is still important to share.

Valid Fears

Image shows H’s reflection in the pizza shop window. He is eating pizza, playing on his tablet, and has his Talker on the table.

Pizza date! We had “meet the teacher” this morning, which was fun. Stopped for a slice afterwards. H is absolutely terrified to go into new stores or restaurants and wouldn’t come in so I parked him at this table right by the window while I quickly grabbed him a slice. It’s so hot and humid to be eating outside but we’ll always respect his needs and he definitely needs to not be in this place for whatever reason.

If, despite my reassurances that there are no ceiling fans or loud machines, he still is terrified, I’m not going to drag him in screaming and cause a panic attack for my own convenience and comfort. We frequently abandon plans if he is upset by them, as I would hope someone would do if I voiced extreme discomfort and fear about doing something.

It’s upsetting to me when we receive advice or read recommendations to repeatedly expose children to something that gives them anxiety to make them “get over it”. Let’s please stop traumatizing autistic children by forcing them to repeatedly endure painful and upsetting situations. It’s abusive.

I’ll stick with respecting my child’s very real fears and clear (albeit non-spoken) communication about what his body and mind need to stay safe. We build trust that his experience is valid and we will keep him safe as best we can. Just because the reason might not be clear or because *I* don’t think the place is loud/frightening/bright/dangerous does not invalidate his opposite truth.

#autisticadvocacy #AAC #respect #anxiety #sensoryoverload #communication #neurodoversity

He is So Much More

Wow – today’s post on Speak for Yourself’s blog hits me right in the heart. So many people *don’t* see these small gains in communication skills because they are too busy collecting data or focusing on something else. Please read it, especially if you are a professional working with students with complex communication needs.

It can be so frustrating when other people don’t notice how many skills my son has with communication just because he won’t use full sentences most of the time and doesn’t phrase things as “I want x. I want y.” Did you know I deliberately didn’t teach “I want” and asked him to say “please” instead? Did you know I purposely didn’t spend all my time focusing on requesting because he can do so much more than request?

Apprehensive About New Teachers

In the last post on my Facebook page, I mentioned that H will have a new Speech Therapist this year. (For those who are new to the page, H is autistic and mostly non-speaking and uses the app “Speak For Yourself” to communicate.) I’m looking forward to a new year and having another set of hands and a fresh perspective to help H develop his communication skills. I’ve heard she is very sweet and I’m eager to get to know her.

As always when new teachers come into his life, I’m also apprehensive about all of the what-ifs. We have been extremely fortunate that our school district is amazing and his teachers have been wonderful. However, I am always waiting for the other shoe to drop. I know that we are swimming against the mainstream current. I know that most of the information that people are presented with about autism is full of misconceptions and ableism. The majority of people view autism as a broken version of “normal”; a collection of deficits and shortcomings; something that needs intervention and intensive therapy to be “fixed”. We do not.

We embrace neurodiversity and know that there is no single “correct” or “normal” type of brain. Neurological differences, including autism, should be recognized and respected as valid ways of being. We reject any therapies that seek to change H or that would make him feel that his way of being is wrong. We want him to have the support and accommodations he needs to thrive as his beautiful, autistic self. We want to protect him from anyone who views autism negatively or who would be so busy looking for things to correct that they would miss all of his amazingness.

And so, I am filled with questions every time someone new comes into his life, even when I am mostly optimistic:

Will she presume competence? Will she secretly (or openly) believe that he doesn’t understand what is being said to him? Will she be open to hearing how we’ve been doing things or will she prefer to stick to the way she is familiar with (if she has a way)? Will she use a natural approach to developing communication skills or will she try to test him or push him to say certain things? What if he becomes averse to using his AAC device and then has no reliable means of communication?

Will she understand and be respectful of our conviction that autism is a natural brain difference and a valid way to be? Will she be inclined to view stimming negatively or be wanting to force eye contact or demand a still body or quiet hands? How much undoing of misconceptions will I need to do to ensure that my child is understood and treated in a way that is respectful of his neurology?

Will she be ready to share in his passions to help him gain new communication skills or will she feel irritated that he “won’t stop talking about carnivals”? Will she go with the flow when he has zero interest in the fun activity she had planned? Can she ensure he feels safe and excited to come see her?

I try to push these thoughts aside. I am naturally a worrier but in reality, I am optimistic and hope that we can all work together to help H communicate more effectively. Now I will take off my anxious hat and put on my productive hat. This week I’ll be meeting with H’s team before the start of school so that I will have an opportunity to share my thoughts and impart as much info about H as I can. I’m committing to staying involved throughout the school year and I’m looking forward to collaborating to make sure he is getting the support and encouragement he needs. Wish me luck!

Communication Autonomy and Self-Advocacy

As H gets older, he is starting to have preferences (and be able to share those preferences) about his AAC device. Whenever I think there is a word we should add I ask him first. After all, this is HIS voice and I want to show him that I respect that. I also want to make sure that he is involved in decision making early on so that he will feel comfortable self-advocating and making changes to his device on his own someday.

“Special Interests” – A Poem

(This was originally posted on my Facebook page several months ago but I am thinking about it today as H is happily playing with his carnival toys!)

[Image is a picture of several carnival toys, arranged carefully, with the text “Special Interests”.]

SPECIAL INTERESTS

Your whole body exudes joy and your soul reverberates with excitement
As you sit and organize your carnival rides.
Each has a place; the cars are in attendance; the people are arranged around and on the rides.

“Appropriate” Play

[Image shows a stack of wooden alphabet blocks with the text “Appropriate” Play beneath it.]

If you are the parent of or work with autistic children, no doubt you’ve heard the term “appropriate play”. Starting from toddler-hood you hear warnings that you need to teach “appropriate play”, that only certain kinds of play are okay and other kinds, like lining up objects or watching wheels spin, are inappropriate. These kinds of play are said to be dangerous, isolating, “red flags”, wrong. Children who like playing this way will be said to have “poor play skills” or “score low” in play skills.

This is, quite simply, a load of garbage.

Maybe change can start here…

Kindergarten. That big looming chapter ahead of us that is leaving me with so much on my mind. I’ve heard it is difficult for every parent to send their first child to kindergarten, whether or not they have additional needs. On top of the usual mommy stuff, when your child is still working on communication and is mostly non-speaking, it can be hard not to be paralyzed with fear of the “what if” scenarios.