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.

dobetter

 

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

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Valid Fears

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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

A note from a friend

H came home from school with this sweet letter from a classmate yesterday. A girl in the general ed kindergarten classroom in which he spends part of the day wrote the note and drew a picture of him rolling down the hill at recess. I love that she drew his blue Talker, too!

I worry a lot about whether fellow students will be accepting of H and if they will be kind and include him. Whether they will truly get to know him and be his friend and not just think of him as ‘that kid who is sometimes in our class’. This town will be his community and I want to make sure he feels like a valued member of it.

We’re happy the school district is pushing toward more inclusion and we are advocating for H to be in the general ed classroom as much as possible. The schools put a huge focus on kindness, celebrating diversity, and building each other up, which is wonderful.

It made my mama heart happy to see this little piece of evidence that someone is enjoying spending time with my sweet boy!

#neurodiversity #autismacceptance #inclusion #AAC #speakforyourself #bucketfillers

[Image shows a crayon-drawn picture of a boy laying on the ground, holding a blue iPad case. The text below (editing for readability) says “Dear H, I love when you roll over it is so funny. It cracks me up.”]
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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? Continue reading

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. Continue reading

“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!)

Special Interests

[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.
Continue reading

“Appropriate” Play


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. Continue reading

Happy AAC Awareness Month!

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October is AAC Awareness Month! Locally, we spread awareness just by being out in the community with the Talker. Someone almost always asks, “What game are you playing?” when we are running errands and they are usually really fascinated when they learn about how H uses his Talker. More and more, people are overhearing him talk and asking if he uses it to talk! That is really cool and a testament to how well he’s doing. We’ve never received any negative comments, but I’m always ready for the “kids can’t go anywhere without their technology!” type of comment since there’s a constant barrage of ‘articles’ about screen time rotting brains (that’s another blog post for another day). I’m brainstorming ideas for the rest month – stay tuned!

A Milestone!

Something major happened this week. Something that has never happened before in H’s life. For the first time ever, he was able to tell me something that happened at school that upset him.

You guys, this is a HUGE deal!! Every parent of a child with complex communication needs worries that their child won’t be able to tell them something important that happened while they were apart.

I’m not going to share the details because I will always respect his privacy, particularly with “the hard stuff”. The teacher let us know he had a hard time at one point during the day but they weren’t sure why and I was able to ask him about it when he got home. He was able to tell me how he was feeling at that time (this alone is amazing!) and what he said afterward didn’t quite make sense without any context but then the teacher emailed me more information about what had been going on and I realized he had told me exactly what had upset him!

So, in short. Wow. 1) Talking about big emotions – win. 2) Being able to tell me what caused him to feel that way/what he was thinking about at the time. Huge! Exciting things are happening!