His choice to disclose

Nick, 16, went to a new dentist yesterday–a dentist for adults, since he didn’t want to see the pediatric dentist anymore (where he’d had successful appointments for several years with an understanding staff*). So I scheduled him with mine, and at his request disclosed nothing about him ahead of time. He wanted to handle it completely on his own.

There was one hiccup when the friendly hygienist put her hand on his shoulder as she guided him back to the exam room and he told her not to touch him, and she took that as “don’t touch me AT ALL” and came to me, all worried because she couldn’t do her job without touching him LOL and clearly expecting me to explain what the deal was with this kid…. I explained the difference between necessary touch and social touch and had a private moment with Nick where I reminded him that if he disclosed his autism or sensory issues, he might gain more understanding from the staff, and he reminded me that HE COULD HANDLE THIS HIMSELF. :-) So, deep breath, I conveyed exactly that to the hygienist and left them to it.

From then on I bided my time in the waiting room with crossword puzzles on my phone, got a reassuring thumbs up in passing from the hygienist in the doorway, and after many x-rays, a cleaning, an exam, and a fluoride treatment, he emerged WITHOUT even needing to grab the keys I held up and go directly to the car! I still don’t know what, if anything, he chose to disclose, and that’s OK because it’s *not about me*.

It has been a long, hard road, and there is no finish line (oh, believe me, we still have our struggles), but I have to share these experiences because I keep learning over and over that 1) presuming competence is the best way to provide opportunities for success, and 2) I never would have expected this when he was younger and I want to remind everyone that our kids do grow and learn and our hard work does pay off. :-) 

 

*How did we do that? Like so:

1) Spent a lot of time talking with Nick about what to expect

2) Shopped around for a dentist who specializes in special needs kids, who…

3) Arranged appointments with no one else in the office (so, no screeching toddlers)

4) Did all the work herself instead of handing him off to hygienists

5) Put Nick in control by stopping whenever he said stop

6) Told him everything she was going to do before she did it

7) Minimized unnecessary conversation and eliminated unnecessary touch.

(Portland-area readers, this dentist is Cynthia Pelley at Little Smiles in Sellwood. Highly recommend!)

A painful realization

A few weeks ago, during a party, I asked a question of a Ouija board: will my oldest son live independently? The Ouija board surprised me by saying no. I was dismayed at first, and then I remembered: 1) that question can be interpreted in many different ways, and 2) it was a Ouija board, for pete’s sake.

I mentioned it to Karla later, not thinking much of it. I had no idea she proceeded to stew on my question for several weeks.

Today, she brought it up. She asked me why I would ask that question, and revealed that she was upset to find out that I still had that kind of doubt about Nick. She wanted to know what it was that led autism parents to maintain such doubts about their kids’ abilities and potential even when those kids were thriving.

I had to think for a long time before I could answer, mostly because I was arguing with myself about whether I truly had those doubts. I didn’t want to admit that it was true. It was gut-wrenching to admit it. Nick has come such a long way since we gained Karla’s guidance. He’s thriving at home, school, and his fencing club; he maintains friendships and delves deeply into hobbies; and he is becoming a mature, responsible, helpful young man. Yes, he still needs a lot of support, but he is learning to advocate for himself, to choose carefully which situations to join and which to avoid, and to regulate himself emotionally. We are on track with our plan to teach him to be his own advocate and arrange his own supports as an adult. Looking at him today, there is no reason to think our plan won’t succeed.

So why did I feel the need to even ask that question? I didn’t wonder about my other two thriving kids. Why only Nick? Why only my autistic kid?

I had to admit that I was putting doubt before hope. No matter how much hope I felt or how much promise Nick showed, I had to acknowledge that I held a doubt so pervasive that it was the first thing I thought to ask about, however playfully, when presented with a chance to see into the future.

It was a painful realization, but an important one.

With my NT kids, I automatically put hope before doubt. Sure, I may at times wonder if they will ever learn to keep their rooms clean or put the dishes in the dishwasher, but even if they bring home lousy grades or seem to spend most of their time doing extra chores for bad behavior, I never think to question whether they will be able to live on their own one day.

But with my autistic kid, on the other hand, I now see that I have been putting doubt before hope. I have been thinking about “if” rather than “when” he will meet my very reasonable expectations.

Karla pointed out that just as our kids absorb our emotions, they also absorb our expectations. No matter how many positive, encouraging words I use, if I don’t truly believe that Nick has every chance in the world of becoming an independent adult, he will know that, and he won’t believe it either. What chance does he have then?

It’s hard to shove that doubt aside when it has been force fed to you since your child was diagnosed. I think every autism parent has heard the same messages that start with “your child will never…” or “IF he can learn to…” and we internalize those messages whether we mean to or not. Our thoughts and assumptions about autism are framed for us in a negative light from day one. But why should my expectations for Nick be set at the time of his diagnosis? I would never limit my expectations for my NT kids based on their abilities at age 8.

I now challenge myself to reframe my thinking. I will put hope before doubt for all of my children. Of course I will have doubts from time to time, but I will make sure that the pervasive undercurrent is always hope.

 

Changing the child vs. helping the child

I often post things about autism acceptance on my Facebook wall. Recently, a friend sent me this message, and with her permission I thought I’d share it and my answer:

Hey Tasia, I really appreciate your posts about autism. They’ve changed my way of looking at autism. I think I’m more accepting and am able to think of autistic people more as “different” rather than “disabled.”

But I have trouble understanding something and I thought maybe you’d help me. I’m sure this is a common question. What about autistic people who are so severely affected that they can’t really communicate with other people? I think that if I had a child like that, I’d do anything I could to help bridge the gap, and part of that would definitely be some kind of communication therapy. Is that “changing” the child or “helping” the child?

It is a common question.🙂 I’ll take your example of a child who doesn’t seem to be able to communicate with others. Conventional thinking says the child should learn to speak so he can communicate. Parents and therapists tell children “use your words” and dismiss the child’s attempts at other forms of communication. They believe that “behavior is not communication.”

In this mindset, the use of iPads and other devices to facilitate nonverbal communication can actually be controversial–some see it as a crutch that will prevent the child from ever learning to speak; some see it as a concession, an acknowledgment that the child has “failed” to learn speech so they must resort to this.

The acceptance mindset says that while you encourage the child to communicate, you also 1) facilitate and celebrate communication in whatever form it occurs, and 2) actively try to learn the child’s ways of communication.

Through autistic people, I have learned that there are ways to communicate without words. They do it among themselves easily–it’s almost eerie to watch Nick and Karla sometimes as they seem to send their thoughts to each other without saying a word, and without the kind of body language that I understand (but I am learning!).

Acceptance is about helping the child without treating him as though he is inadequate as he is, without making him think his way is wrong, or that other people are somehow better than him and he should try to be like them. You provide him with tools and teach him how to use them within the boundaries of his abilities.

Also, I think  it’s fine to think of autism as a disability. The fact is, there are some things that Nick can’t do, and he will need to advocate for accommodations, now at school, later in the workplace, always among the people in his life. Ultimately, I would love to see autism known simply as a difference in neurology, just one of many ways of being human. But right now, societal assumptions of “normal” ability put him outside that range.

The different with autism compared to other disabilities is that autism is commonly seen as something that can be defeated. Something that, if they just work hard enough, they can overcome. And many people spend years and years trying to overcome something that is part of who they are, leaving them feeling hopeless and inadequate.

A lot of people reject the acceptance movement because they think we are saying they should do nothing to help their kids live better lives (and note that it’s almost always parents saying this, not autistic people themselves). When your nine-year-old child is nonverbal, doesn’t feed himself, has not toilet trained, perhaps self-injures… of course you want to help your child to learn as many life skills and safe coping skills as possible. But how you do it matters. If you can start with acceptance of your child for the unique human being he is, and become OK with the possibility that he will always have the same needs he does now, then you can move on respectfully and patiently to helping him learn new skills on his own timetable, for his own sake and not anyone else’s.

Something I keep in mind when considering therapies and the like: do I want this for my child, or do I want this for others?

Life skills benefit the child and can be taught without any implication that the child is “lesser” for not having them. Social skills are another story and that’s where acceptance comes more into play.

Example: autistic kids are often not allowed to stim. Stimming (flapping, rocking, pacing, fidgeting) is an important tool for self-regulation. Stopping his stims does not benefit the child in any way; in fact, it hurts him and is counter-productive. (Self-injurious stims are another matter, but those can be redirected instead of suppressed.) But conventional thinking says that stimming is bad so they try to make it go away. Why is it bad? Because it makes other people uncomfortable.

This is what most social therapies are about: teaching the autistic child to behave in such a way that makes everyone else feel comfortable. Teaching him to do and say and even think the “right” things. (Yes, social training does actually tell them what they should be thinking.) This is the sort of thing that the acceptance movement protests.

Autism has its own culture and assuming positive intent is central to it. While my autistic friends are direct and blunt, and they really can’t be any other way, they are generally not hurtful. It’s my responsibility to not read emotion into their words that isn’t there.

Acceptance means that I take them as they are, rather than insisting that they change the way they talk to me. It means I don’t tell them to stop flapping because it’s distracting; instead I find my own ways to stay focused (and it works great that in autistic culture, I can look away without being called rude!). It means I understand that they are working hard every day to process the world and I don’t ask them to work even harder just to make me feel comfortable. Actually, as long as I am accepting, I feel perfectly comfortable.

Of course we all want to maximize our kids’ potential. When we work toward that goal with acceptance, we see autism as simply a part of who they are, not something to be trained out of them.

Could you pass this kindergarten?

I came across this blog post today: On Failing Kindergarten. The author, an autistic adult, explains why she would fail special ed kindergarten based on their “Whole Body Listening” requirements as depicted on this poster, which is apparently popular in those classrooms:

Take a look at all the requirements for listening correctly. It’s not enough to just listen, as in: hear what the other person is saying and process it. You also have to make eye contact, keep silent, keep your hands still and in one of three acceptable places, keep your feet on the floor, turn your body in the right direction, make your brain think about the words, and CARE.

Are neurotypical students held to these standards? I don’t remember all these rules for listening in kindergarten. I know that if I had been told I HAD to CARE about what my teacher was saying, I would have been in trouble a lot.

This poster sets up autistic kids for failure in many ways. Not only is it a lot to remember every time someone talks to you, but 1) it asks the impossible, 2) it sets up the child for ridicule by NT peers, and 3) it completely disregards the legitimate ways in which autistic kids DO listen and seems to be unaware that these requirements are contrary to their goal. More on each of those:

1) It asks the impossible. You can’t force yourself to care about what someone is saying to you. Remembering that autistic kids tend to be very literal, think about what they may feel at being told they MUST care, while knowing that sometimes they don’t care. Right away they have failed.

Thinking about what is being said while listening to it is often impossible too. Not all brains process at the same speed. If I told my son that he had to think about my words WHILE he was listening to me, he’d think I was crazy. First he takes in the words, then he processes/makes sense of them, THEN (if he’s at all interested in what I said) he thinks about them.

2) It sets up the child for ridicule. Again, remember that autistic kids tend to be literal. Now imagine an autistic kid among NT peers, trying to show that he is listening correctly by always turning his body to the speaker, looking him in the eye, and not moving. Is that how kids listen to each other? In kindergarten or at any age? What about adults? Pay attention the next time you are listening to someone. Are your hands and feet still? Are you making constant eye contact? Do you remain completely silent (or do you maybe throw in an “uh huh” or “I see” once in a while)? While these rules for listening may, theoretically, result in cooperative little students in a classroom setting, they give the child nothing practical to apply elsewhere.

3) It disregards the ways in which autistic kids DO listen. My son looks at me when he is talking to me, and looks away when he is listening. He listens best when he is pacing and/or rubbing his hands together. He would never be able to follow all these rules AND listen at the same time, and he’s way past kindergarten.

This concept actually falls into the first category as well: asking the impossible. Many autistic kids simply can’t listen and make eye contact at the same time. Some can’t listen unless they are moving. Some may appear to be doing everything “right” with their feet on the floor, their hands at their sides, their bodies turned toward the speaker… but they’ve used up all their tokens on managing all that and have none left for actual listening.

I consider my son lucky that he was not subjected to that poster and others like it. My visit to the junior high classroom for ASD kids when Nick was in 7th grade led me to insist that he not be part of that class. The walls were covered with posters listing all the rules and requirements the kids must remember in order to appear as neurotypical as possible. It left Karla, who was with me, feeling like they were telling her she was lesser, even subhuman, if she did not do things their way or think like they do. She talked about it here and here.

If a secure adult feels this way after one hour in an autism classroom, imagine what kids feel like after years of this sort of training. They hear constantly that their way is wrong, but they know that they literally can’t do it the “right” way. If they manage to give the appearance of following these rules, they are likely to be laughed at outside of the classroom.

I’ve heard from many, many autistic adults that this kind of social skills training left them feeling hopeless, disrespected, and down on themselves. Many did their best to follow the rules they were taught only to burn out in adulthood.  Teaching autistic kids to act like they’re not autistic, to “pass” as neurotypical, seems to be the goal of this kind of training, but it comes at a tremendous cost to these children.

I choose to teach advocacy instead, and to lobby for acceptance. Nick has access to the special ed teachers at his school and can go to them if he wants their advice, but he is never forced to be in the autism classroom with all of its “your way is wrong” messages. The primary goal of his IEP is advocacy, so every time he asks a teacher for support or accommodation, they can claim measurable progress. He learns from autistic mentors how to advocate for his own legitimate way of being, and spends time with autistic peers in their own unique culture. He demonstrates fine social skills naturally while hanging out with people who share his special interests.

I don’t want Nick to learn to stand still while listening. I want him to learn to say, “I need to pace so I can listen to you.” I want the people in his life to accept that, and we are working on it, one person at a time.

Social skills: context matters

Last week Nick’s science teacher mentioned in an email that he was concerned that Nick is isolating himself socially. The other kids don’t know that he’s autistic, and they wonder about his odd behavior and lack of social reciprocation. There appears to be a general atmosphere of acceptance in his science classes, and I am not pressuring Nick to disclose his autism. Still, something seemed lacking in his teacher’s view, because school is seen as a social place and not just an academic place. A child who doesn’t even try to make friends is cause for concern to his teachers no matter how good his grades are.

I told his teacher that there should continue to be zero pressure on Nick to connect socially in school. Nick uses school for academics only. Everything that does not lead to him getting a diploma we have eliminated—no homeroom, no assemblies, no pep rallies, no non-required electives. His custom school day uses up way fewer tokens than a regular day would, which allows him to thrive at school and get his education. If we added in social expectations, he would be overwhelmed.

That’s not to say that we don’t want him to have a social life. Nick craves social contact to a certain degree, so we look for appropriate ways to meet that need. At Karla’s monthly teen/mentor meetings, Nick is outspoken and supportive. He engages regularly with his siblings. He has neighborhood friends who have known him since he was four and accept him as he is.

Yesterday we were in Vernonia, a small town about an hour’s drive from home with a lake that has just been stocked with 3,000 trout. Nick had been planning this day for weeks, and while we waited for Karla to meet up with us, Nick connected with a handful of boys who were out here for the same reason. They talked about the best spots on the lake to fish, what kind of bait they were using, and who had caught what so far. None of them knew each other but they were instant fishing buddies. The old coots who are always around advised the young ones, and the young ones heeded them with respect. I watched him interact and wondered if his science teacher would even recognize him. The awkward, seemingly antisocial kid who ignores his classmates was demonstrating stellar social skills to anyone holding a fishing rod. This happens every time he goes fishing and there are other people around.

So what’s going on here? Does my autistic son lack social skills or does he not? The answer is that context matters. Socializing costs a lot of tokens. When Nick is in a situation that is already difficult for him, he won’t have those tokens to spare. He will need to focus on what really matters to succeed in that situation (in science class, success = learning science). When he’s engaged in a special interest like fishing, he is rebuilding his token supply, so he has plenty to spare for non-necessities like socializing. Because he does crave social contact, connecting with his fellow fishermen at the lake is a priority, unlike making friends in school.

At his last fencing tournament, I noticed the same thing. Fencing is a different kind of special interest for Nick because it does cost him tokens due to the stress of competing and the sensory input. But he is rebuilding tokens while he spends them because he gets so much satisfaction from fencing, so he can generally participate in the social aspects of practice and competition. In Seattle two weeks ago, Nick chatted with his teammates, cheered them on, listened carefully to his coach, and even talked to fencers from other teams. Again, I suspect his science teacher would have been surprised to see how social Nick can be in that context.

(By the way, for anyone who knows fencing, Nick earned his first rating at that tournament: E2013. He’s not just a good fencer despite his challenges. He’s a good fencer, period.)

Karla often says that autistic people need to “find their peeps” as she did in the high-tech industry and among people who share her special interests. Nick’s peeps are at the lakes and rivers; they’re at fencing clubs, campgrounds, and reptile expos. Those are the places where he shines. School is a tool he is using to gain himself more options for how he wants to live his life. It’s not a place where he should be judged by his social skills. Nick is thriving in school: getting straight A’s, making the honor roll, and learning eagerly. If a teacher doesn’t see that as thriving in the absence of making friends, I am here to show him a different perspective.

Meltdowns: triggers vs. root cause

Once upon a time, I thought I could stop a meltdown. I thought there must be some strategy that I could learn, some consequence I could impose, SOMETHING I could DO to just make it STOP.

Karla must have laughed so hard the first time I asked for her advice on this! But she patiently, through many of my panicked texts and emails, redirected me away from the idea that I could handle it in the moment and toward the concept of root cause.

Now I know that I can no more stop a meltdown than I can stop a train. Trying to stop it is a lot like jumping onto the tracks and waving your arms. If the conductor sees you at all, he’s going to feel really bad about plowing through you, but plow through you he will because there is nothing else he can do. And he would be justified in blaming you for putting yourself in the way.

Let me sidestep for just a minute and make sure everyone knows what I am talking about when I say meltdown. I’m not talking about a temper tantrum, which is a child’s deliberate attempt to get what he wants by throwing a fit. A meltdown is a complete loss of self control. Neither threat of the most feared consequence nor promise of the most coveted reward will stop it. It happens because the child has no more ability to cope, but the demands on him have not stopped, whether in the form of tasks, behavior expectations, sensory input, or anything else that costs him tokens.

So, back to me, standing on the train tracks, begging Karla for a way to stop the train. She would ask me what had caused the meltdown and I would describe what had triggered it (which could be anything–a simple question, an accidental touch, being out of his favorite snack). No, she would say, what was the root cause? I’d think back a little farther to something that had preceded the trigger (an argument with his brother, a bad day at school). Still no. Think back farther, she’d say. Has he been sleeping well? Was he healthy? How was his diet? Had he been getting any exercise? Was he spending too many tokens at school? I’d begin to feel like she wasn’t listening, that she didn’t understand that I was in mid-crisis here and I needed help! I couldn’t do anything about those things RIGHT NOW. This train was barreling down on me and I needed to stop it RIGHT NOW!

Today I understand that Karla was trying to pull me off the tracks. Whatever had triggered the meltdown didn’t matter. What mattered was that Nick had no more tokens, and the drains on his supply began long before the trigger hit.

So why had he run out of tokens? Had he spent too many on something, or started the day without a full supply? Figure that out and I’d have root cause. Figure out root cause and I’d get fewer meltdowns.

But where did that leave me in mid-crisis? Where was the solution in the moment?

There wasn’t one. If the meltdown was already in progress, all I could do was get out of the way.

It was a hard lesson to learn. I felt like simply stepping back and allowing a meltdown to happen was like saying sure, go ahead and scream and throw things, call me names, that’s fine with me. But when I finally came to understand that he really had no control over his behavior at that moment, it was easier to accept that I had no control over it either.

Instead of trying to force him to stop, my job is to make sure he is safe, but otherwise to disengage. Any input that he receives from me just demands more tokens that he doesn’t have and prolongs the meltdown. This is true even if he is trying to engage me. Some meltdowns come with verbal expression that may tempt me to argue back, explain, try to get him to see reason. This is not the time to discuss, answer, or demand. It’s not the time to take seriously, or personally, anything that he says.

If I can see the meltdown coming, I may be able to get him to a safe place (like his room) where he can explode in private. It’s easier on whoever else is in the house, and it’s easier on him, too, because he will be protected from all input.*

Meanwhile, I look back to root cause. Again, whatever triggered the meltdown is not the same thing. He melted down because he ran out of tokens. I need to figure out why he ran out of tokens. That is the root cause of the meltdown. When he was melting down constantly because school was costing him too many tokens, we changed how he does school. If I realize that I forgot to give him an afternoon snack, I get one ready and add a reminder to my daily to-do list so I won’t forget again. If I’m not sure why he ran out of tokens, I have to figure it out. In any case, I reduce demands on him until we regain balance.

Meltdowns hurt. No one wants to have them. They are painful and stressful for the people experiencing them, whether they are the ones having a meltdown or the ones present during someone else’s meltdown. It takes time to recover from them. I believe it is crucial for the health of an autistic person to keep them to a minimum. (I should note that adults have meltdowns too and the same concepts apply.)

Avoiding meltdown triggers just leads to me walking on eggshells around my son, avoiding an ever-growing list of things that took his last token while not actually reducing meltdowns. Looking for root cause, and using it to structure our lives in a way that maintains token balance, has been far more helpful. Plus, Nick is learning to understand root cause so that eventually he will be able to manage his own meltdown prevention.

Once upon a time, I thought that by “allowing” meltdown behavior, I was reinforcing it and thereby encouraging more of it. I tried to stop every meltdown in its tracks, and he was having meltdowns every day.

Now, I focus on prevention. If that fails and they happen anyway, I do nothing to try to stop them. The result is that meltdowns are now much less frequent in my house. Once again, the solution was to flip my thinking around.

*Self-injurious behaviors add another aspect to the meltdown and affect the balance between disengaging and keeping the child safe. This post presumes the meltdown behavior is not dangerous to the child or other people.

What are tokens?

If you hang out on Karla’s ASD Page or read more of this blog, you’ll encounter the concept of “tokens.” I’m going to use it in my next post and I want to be able to link to an explanation, so here it is:

The term “tokens” refers to the amount of energy, processing ability, emotional regulation, coping skills, etc., that a person has. Assume for the sake of simplicity that you start each day with a fresh supply of tokens. Everything you do that taxes you in some way costs you some tokens.

If you are autistic, you spend more tokens on many tasks than a neurotypical person does–getting dressed, for example, takes more tokens because of the sensory processing involved.

Throughout the day, it doesn’t matter where you spend your tokens–when they’re gone, they’re gone. So Nick goes off to school with a decent supply, but if he uses them all up to get through his classes, he won’t have any left by the time he gets home.

Out of tokens + new demands = meltdown.

If I can avert a meltdown by sending him immediately to his room where he can recharge by spending time alone and perhaps with a very easy special interest, he may be able to build up some more tokens to get through the rest of the day. But if he melts, he will need so much time to recover from the meltdown that the day will be shot. Even a special interest may be too taxing (Nick’s fencing class, for example–he loves it but it he has to go into it with enough tokens to deal with the noise, lights, and social demands).

This is why Nick only goes to school for a partial day, why he does his most challenging classes online, and why we came up with new supports when a school expectation was using up way too many of his tokens. I want him to be left with enough tokens to spend time doing things he loves after the school day is done.

Before his current IEP was in place and he was using up all of his tokens coping with school, he was melting down every day. We advocate for him, and he is learning to advocate for himself, so that he doesn’t spend all of his tokens before he has a chance to recharge his supply.