Friday, September 30, 2016

Teaching Your Autistic Child: The Neurodiversity Way

One very common misrepresentation of neurodiversity is that it advocates not doing anything to help your child learn useful skills that are harder for them to learn.

This belief, I think, comes out of the tendency to equate teaching with therapy and therapy with "fighting the disability". I've noticed that literally anything beneficial for a disabled child is seen as "therapy".

Taking your child swimming? If it's a typical kid, it's just a fun day out. If it's a disabled child, it's therapy. Talking to your child? If it's a typical child, you're just having a conversation. If it's a disabled child, you're providing language stimulation. Teaching a child to read? If it's a typical child, it's education. If it's a disabled child, it's remediating academic deficits. And all of it has the same goal - to make the child less disabled.

This tendency to paint everything as therapy leads people to think that not doing therapy, or not trying to cure the child, means doing absolutely nothing with the child. But this couldn't be further from the truth!

So, for that reason, I've decided to compile a list of ways to teach an autistic or other neuroatypical child useful skills, without trying to cure them or infringe on basic human rights. So, in no particular order:
  • Consider the side effects. Everything, even purely behavioural strategies, can have side effects. Always think through whether there's a potential for the child to learn an unintended lesson (eg "my likes and dislikes are wrong", or "acting weird justifies being bullied", or "people who are bigger and stronger than me can force me to do whatever they want"), how much stress this strategy causes for you, your child and everyone else in the child's life, and so forth. Some things just aren't worth the risk. For example, in one of Torey Hayden's memoirs about her special education students, Somebody Else's Kids, a child with a brain injury is trying and failing to learn to read, and her repeated failures are causing serious emotional problems. Despite the importance of reading in our society, and the risk of how her own superiors will react, Torey Hayden eventually decides to give up on teaching reading to this child to save her from the emotional side effects of reading.
  • Consider sensory issues. The vast majority of autistic kids have sensory processing differences. Sensory issues are best dealt with through a mix of meeting sensory needs (eg letting a child rock), avoiding or reducing sensory stimulation that the kid can't handle (eg letting them wear headphones or going to the store when it's not busy), and careful exposure to stressful sensory stimulation in a context where the kid controls the situation and gets to cool down afterwards.
  • Share your child's interests with them. Teach social reciprocity by practicing it. If your child is lining stuff up, add to their line (if they'll let you). If they're playing with a fan, play with it too. If they're obsessed with videos games, watch them play and offer encouragement, or else look up strategies or recipes online for them. If they want to learn more about a particular subject, help them find more information and let them tell you all about it. If you need a break, set reasonable limits - not "only discuss this topic for 30 minutes a day" but "don't talk about it until I'm past this busy section of the road". There's nothing wrong with having unusual interests and being obsessive about it. In fact, it's often where an autistic child's biggest strengths will emerge.
  • Talk to your child. Narrate their actions, comment on what you think they're feeling and thinking, comment on what they're paying attention to and what you think they're noticing about it.
  • If your child self-injures, figure out what purpose that behavior serves. Does it happen more often in some situations than in others? Could it be a response to sensory issues, anxiety, or frustration? Does the child seem to feel pain when they self-injure? Do they have other ways to communicate distress? Does self-injuring result in an outcome they like?
  • Make holidays fun rather than typical. If your kid cries when people sing Happy Birthday, don't sing it at their birthday. If they want to be a lamppost for Halloween, do your best to figure out a lamppost costume, or else explain why you can't without telling them their desire is wrong. If they hate surprises, tell them what's in each of their presents so they know what they'll find as they're unwrapping them. If they don't like normal kid toys, give them something they'll like as a present (my Dad once deliberately tied an excessive amount of twist ties to a present bag to hold it closed, because he knew I liked making figures out of twist ties).
  • Teach life skills through picture schedules and direct instruction. Many autistic kids understand sequences better if they're portrayed visually. (I know I do.) Actively encourage your child to help with chores to the best of their ability, instead of expecting them to pick up how to do these by osmosis. At lower skill levels, work on toileting and dressing self and so forth. Focus especially on building independence in areas where the kid most hates you helping them, such as activities that cause sensory distress (eg hairbrushing, brushing teeth) because active involvement and control allows the child to cope a lot better with sensory discomfort. And most of all, be patient! Set aside extra time for the child to take a long time doing a task, and keep calm if they make mistakes. If it just isn't coming, consider alternatives. For example, a child who can't be toilet trained might still be able to learn to change their own diaper.
  • Figure out how your child communicates. Everyone communicates nonverbally. If your child can't communicate verbally, understanding how they do communicate is essential. And if they can communicate verbally, they might not always be able to say what they need to say, especially when they're under stress. The Communication Matrix is a great way to describe how someone in the early stages of language development communicates.
  • Remember that different kids have different needs. Just because something isn't a basic need for a neurotypical child doesn't mean that an autistic child can't need it. Most kids don't need to be looking at you to understand what you say, but a Deaf child does. Just like any other disability, developmental disabilities will cause some needs that will never be trained out of the person, and the best approach is to honor and accommodate those needs.
  • Consider motor issues. An important subset of autistic kids also have neurologically based motor challenges. These can include poor balance and coordination, difficulty with motor learning and motor sequences, involuntary movements (including some movements that look very purposeful, such as opening a cupboard door or walking towards an exit) and difficulty initiating movements. These issues can also affect a child's ability to speak in some cases - this is called childhood apraxia of speech. Excessive pressure tends to make motor problems worse, prompting can make a child do something whether or not they want to do it or else make it impossible to do it at all, and the child tends to have the easiest time doing movements that are very routine or when they're not thinking too much about it.
  • Honor their best attempts at communicating. You don't have to give them what they want, but acknowledge what they're telling you. For example, when my dog stares at a stranger and pulls on her leash, while holding her back and telling her to sit, I also tell her "I know, you want to make friends with them. It's so exciting when you meet new people. But you have to sit, because a lot of people don't like having a big dog jumping on them." And if there's no reason not to give them what they want, why not do it? Honoring their communication teaches them that communication works, so they're motivated to communicate more.
  • Give them freedom. Barbara Coloroso, in her book Kids Are Worth It!, says that if "it's not life-threatening, it's not morally threatening, and it's not unhealthy", the child should be free to decide for themselves. This applies just as much to disabled kids as to typical kids. Letting your child take ownership over their own choices has several benefits: a) it prevents wasted time and misery over minor annoyances, b) it gives kids the power to say no to other people trying to force them into more unsavory activities, and c) it helps you to understand your child better.
  • Consider executive functioning. This is a major source of difficulty for many autistic kids. They may have trouble with planning, time sense, external motivation (doing something because they should, rather than because they want to), organization, impulse control, etc. Never confuse executive failure with lack of effort or willful disobedience. Executive function issues can be managed with systematic practice, external supports (such as timers, schedulers and real-life RPG reward systems), and only demanding what the child is ready to handle. They may need direct parental management of homework long past the age that most kids can handle it by themselves.
  • Model other ways of communication. Speech isn't always the best option, and in any case, it's not an either/or situation. Expose your child to sign language, written text, and picture-based communication. Never tell them what to say - then it's not communication, it's dictation. Instead, show them how you would use that communication system to say what they want to say. You could use it to communicate to them, as well as using it to translate their messages into a more widely-understandable format. I can't find it now, but I once read a story where two boys with speech-generating devices started fighting over the same snack. One aide immediately went to the device belonging to the rightful owner of the snack and made the device say "stop, no, that mine". Then another aide went to the other boy's device and said "I want that" with the device. They proceeded to narrate the argument while intervening physically to return the snack to its owner. That experience might help those boys use their devices rather than their hands to communicate those messages in the future.
  • Avoid dangerous assumptions. This goes both for assuming they can and assuming they can't. If you're thinking about saying something that could be damaging for the child to overhear, don't assume they won't understand it - say it in private instead, or rephrase it so it's less damaging. If you're giving important instructions to your child, don't assume they will understand it - tell them in multiple ways, and have a backup plan if they don't get it. If your teenager has significant self-care delays, don't assume they will or won't live independently - teach them what you can and make plans for both possibilities.
  • Don't make the child own other people's problems. If a child chooses to bully another child, that's the bully's problem, not the victim's problem. Don't expect the victim to change for the bully's sake. If the victim wants advice, make sure they know that although doing certain things might appease the bully and make them less of a target, the bullying is not caused by their behavior, but by the bully's own problems.
  • Give the child warnings about upcoming stressors. If you know their routine will change, tell them ahead of time and let them see a visual schedule. If you know there's going to be a loud noise or something painful or stressful happening, tell them honestly about it. If an activity they like will end soon, give them a countdown as it's coming to an end.
  • Explain the reasons for rules. Even if you aren't sure if the child understands, tell them why a rule is in place. If the child disagrees with the reasoning you give, engage in a discussion with them rather than just asserting authority. Never have a rule just "because I said so" or "because this is how we do it". If you aren't the one setting the rule (eg if you're a teacher or therapist who has to answer to a superior, or if it's a legal requirement), admit that instead of trying to defend the rule as if you were.
  • Manage stress levels. If something is stressful but necessary, make sure other things are as calming as possible. If you have to take the child somewhere overloading, plan to go somewhere quiet and let them stim freely for awhile afterwards. If the child tends to be an emotional wreck when they come home from school, plan for something relaxing immediately after school, instead of heading straight into homework. If something major will be changing, keep other things the same.
  • Teach a child to help themselves. Once you know what to do to help them, start planning for how to teach them to do it independently. Teach them how to recognize sensory overload and ask for a sensory break. Teach them how to get information about an activity and put it in their visual schedule. Teach them how to use an electronic scheduler or real-life RPG system to keep track of tasks they need to do and appointments they have. Don't take away support too quickly, but practice the skills they'll need to help themselves someday.
  • Stand up for your kid and others like them. If you see someone discriminating against them - a bully teasing them, a teacher blaming them for something they can't help, a stranger asking judgmental questions about them, etc - calmly but firmly correct them. If that doesn't work, get mad and refuse to back down. If nothing else works, remove your child from the toxic situation. Don't do something to another autistic person if you wouldn't want someone doing that to your child someday, and stick up for other autistic people when someone else does something bad to them. Fight for your child's rights, not just for their sake but for the sake of the children who come after them.

Friday, September 23, 2016

Up-goer 5

XKCD decided to explain space travel using only the ten hundred most commonly used words. Here's a diagram here, and there's also a video.
They also have a text editor, where you can try to explain something using only the ten hundred most common words too.

Here's my explanation of learning differences:

We all learn. But how we learn is sometimes different. Some people have trouble learning to read or write or use numbers, even though they can learn other things easily. Some people are slower to learn everything. And some people have trouble learning to speak, or use their bodies, or understand what others say. Some people even have trouble learning to see or hear. They can see and hear, but what they see and hear doesn't make sense to them. Some people also have trouble learning to understand how other people feel and what they are thinking. And some people have trouble learning how to take care of themselves, or keep their house clean. Some people have trouble keeping track of time, and forget things they need to do.

When someone has trouble learning something, they might need more time to learn it, or they might need to learn it a different way. Sometimes they never learn it, so they have to find a way to do things without using that thing. Someone who can't read might need a computer to read for them, or someone who can't keep track of time might need their phone to help. Someone who can't learn how to walk might use a chair that rolls around. Someone who has trouble learning to talk might use a computer that talks for them or they might use hand signs. You can't always tell if someone who has trouble learning something will be able to learn it, so some people start out doing things a different way and then learn how to do them more easily.  

Often people who have trouble learning one thing can be very good at learning something else. Someone might be very good at reading but have trouble with numbers, or have trouble understanding people but know a lot about a favorite thing. Some of the people who have done the most amazing things have had trouble learning.

This might be a nice tool to write text designed for an AAC user to say. I've been thinking of writing some core vocabulary stories, but I find it hard to write if I'm constantly checking a word list to avoid fringe words. I just wish I could adjust it to different vocabulary sizes.

[edit: Just found this, which color-codes words by frequency instead of just banning all words below a certain frequency.]

Saturday, September 10, 2016

21 Days of AAC: Week 3

See week 1 here and week 2 here.

This ended up taking longer than 21 days, but oh well. I'm glad I did it, and I'm planning to do it again several months from now. It was a nice mix of challenges, some I found simple and some not.

I also feel a mix of relieved and let down, now that it's over. It was a kick in the butt to make me try some things I wanted to try but felt scared to, but university is starting and I'm kind of glad I don't have to worry about this stuff while taking my classes.

Task 15 - Describe 3 Beautiful Things
I've had trouble deciding what to describe and I'm also feeling very sick and somewhat depressed, so it's hard to get the energy.
First I said: “My old cat is beautiful. She is black, white and orange with yellow-green eyes. Her fur is thick and soft.”
Two days later I said: “I like the amazing song. It makes me feel good about myself because those children are like me, and the song says they are amazing. It shows autistic kids acting autistic and says they are amazing. It recognizes that stimming can be a good way to play. It also shows kids who are upset, and says it's okay to be upset sometimes instead of seeing this as a continuing thing about autism.”
And later that day, about one of my stim toys, I said: “It is a sparkly shiny silver colored necklace. It is too small to wear but I don't care. The thing at the end has sparkly pieces on a white thing and the back is smooth shiny silver. I like the way it looks and how it feels when I play with it.” (Added 'sparkly’, 'shiny’, 'lace’ and 'smooth’.)

Task 16 - Tell someone my plans for the day
I told my dad “Father I want to buy the carrier for this” (the AAC device) and then added “I also want to sign up for asl”. (The deadline to sign up for the fall ASL class in my area is coming up very soon.)

Task 17 - Summarize an article about an unfamiliar topic
Not sure if this counts as unfamiliar, but I haven't been focusing on it - the Syrian refugee crisis. I read an article by a humanitarian organization and said “I read about people who are in danger because of a war. They have to run away and find a new place to live. The story focused on the children in the war. Many of them are orphans. Many are getting hurt or killed. Some are being forced to have sex with adults or they are being forced to fight in the war. Many are getting sick because they are living in camps with too many people and no way to keep clean. It is a very sad situation but the people who wrote about it are trying to help.”

Task 18 - Say something that I wish I'd said to someone
“I knew you were there, I just wasn't expecting you to stop in the doorway.” I wish I'd said that to an old lady who started chewing me out for looking at my phone while walking. She'd stopped abruptly right in front of me and I just barely stopped in time, and then she said something snarky about me looking at my phone and not paying attention. Really, I'd have had just as much trouble stopping in time if I wasn't looking at my phone, because I didn't expect her to stop in front of me.

Task 19 - Give three compliments
Told my mother “you are a wonderful mom”. She has just been told that she is not getting renewed at her job, and she's taking it hard, so we're trying to comfort her. Then I checked and I have “compliment” under “tell”. I then told my brother, who was helping me comfort Mom, “you are a caring son [his name typed out].” Lastly, that evening, I said “I am lucky to have a wonderful brother”.

Task 20 - repeat of task 14
I got tracking unlocked for my AAC device, so I repeated that task. I had 'the’, 'a’ and 'to’, and chose the synonyms 'enough’, 'one’ and 'in’.
I said “I am good enough”.

Next day, I said: “the dog is in the house” and “one dog and one human go for a walk” (added 'human’). At lunch I said “I want in”, “I have orange drink in my bottle”, “I ate enough food”, “I had one piece of apple pie” and “Mom, have you had enough to eat?”.

Friday, September 02, 2016

Hypocritical Education About Disabilities

I've recently been trying to get some good disability-related children's books, because I'm reading children's books to practice AAC and I want my future child to have good books showing diverse people. Unfortunately, two of the books I've found so far (both with rave reviews) show a troubling disconnect between the intended message and what the author seems to believe.

The clearest example is The Autism Acceptance Book by Ellen SabinThis book is aimed at NT kids who know autistic kids - the subtitle is "being a friend to someone with autism". Overall, most of the book's message is pretty good, all about trying to take the perspective of someone on the autism spectrum, and kid-friendly explanations of autistic traits, with discussion of strengths and not too much pity.

I've noticed two problems, though. First, several times it suggests raising money for autism research as a nice thing you can do for your autistic friend, completely ignoring the ethical issues many autistic people have with a lot of autism research being funded by nonprofits. The inclusion of that suggestion is also strange given the overall positive portrayal of autism - would Ellen Sabin have suggested donations to research as a way to support a friend from a minority ethnic group, or a friend who was LGTB or something? While researching diversity is certainly interesting, framing it as something to do to benefit a minority group member implies that they need scientific help, such as a cure. This is incompatible with the "it's okay to be different" message that the book is generally conveying.

The hypocrisy is revealed in full detail by her "note to adults", which stands in jarring contrast to the acceptance message her book tries to teach children. It opens with this sentence:

Autism is a growing problem that afflicts thousands of children every year. 
Right. So now we see how Ellen Sabin truly sees us. Not as people who are different, with our own strengths and difficulties, and worthy of acceptance as the unique people we are. No, we're a "growing problem", "afflicted" by our autism. (Note: this book is aimed at elementary school kids, not preschoolers. I can assure you that if you give a bunch of elementary school kids a book with a note for adults, at least some of them will read it.)

The other book's hypocrisy is more subtle to an adult reader, but it's more integral to the book. This book is How Katie Got a Voice (And a Cool New Nickname) by Patricia L Mervin.

Whereas the first book is a nonfiction book, the second is a fiction book designed to be educational. The story is set in a school where everyone is given quirky nicknames based on what makes them unique. But the new student, Katie, is a girl with a physical disability and complex communication needs, and the perspective character - the one who assigns nicknames - has no idea what to nickname her. The implication is that he wants to nickname her based on her personality, not her disability, but her disability makes it hard for her to communicate her personality.

But good news! Katie is getting an AAC device! The perspective character reports that he didn't know this at the time, but Katie and her speech-language pathologist were working on a switch access system in her therapy sessions. Then comes the big unveiling, and the big disappointment for anyone hoping Katie might actually get some characterization.

Katie doesn't really do anything unique with her AAC device, just mimics everyone else's "thing". Still, she could at least have gotten the nickname CopyKate, or something. Instead, when she asks for her nickname, what does she get? CommuniKate! They may as well have nicknamed her Wheelchair, if they were going to base her nickname on her assistive equipment!

The book ends with a bunch of tips for how to relate to a disabled person, including the suggestion to "see the person, not the disability". Personally, I think you should see the person and the disability, myself, but this book does neither of those. Katie's characterization and even her nickname are entirely related to her disability, with no hint of anything to differentiate her from any other switch-AAC user.

Not like Melody from Out of my Mind, who is a linguistically gifted kid with a competitive streak. (And also uses a direct-access AAC device.) Or Brynn from Dancing Daisies, who from the tiny bit I've seen so far is clearly a distinct person of her own. (I can't imagine Melody putting up with people speaking for her as much as Brynn does in the starting bit, even if she was a switch-access user.) Granted, it's easier to characterize someone in a chapter book than a kid's picture book, but this honestly smacks of not even trying. (CommuniKate? Seriously? I'm still flabbergasted that she thought this was a cool nickname for an AAC user!)

I think this is reflective of a larger issue. In the parent survey I did a long time ago, part of the results lost with my old website was a pair of qualitative questions asking the parents "how do you view autism?" and "how do you want your child to view autism?" The most striking result was that most parents, especially those with more negative views of autism, wanted their child to view autism more positively than they themselves did.

The problem is that it doesn't work that way. I also asked parents "how do you think your child actually sees autism?" With the exception of the parents who had no idea or didn't think their child knew they were autistic, most parents felt their child's view of autism was closer to their view of autism than to the view they wanted their child to have. Which is consistent with children's socialization in general - kids mostly mimic what we practice, not what we preach.

So if you want disabled kids and their non-disabled peers to see disability positively, then you have to start with yourself. You need to practice what you preach. Otherwise you're just a hypocrite, and sooner or later, the kids will realize you don't mean what you're saying. A racist can't teach tolerance of ethnic diversity to children, and an ableist can't teach tolerance of disability.