Wednesday, October 31, 2012

Trick-or-Treating, TPGA-Style

Our community: All trick-or-treaters welcome,
everyone who wants to participate, does.
It's Halloween! Are you or your family going trick-or-treating? Some of our families have it down to a successful science, and follow the advice from our perennial TPGA Halloween  post:
Do you think your child will enjoy trick-or-treating, but are worried it may not be appropriate for them? If they tire easily, or have easily-triggered and unpredictable meltdowns, then plan a limited route close to home, or have another adult trail your crew in a getaway car. If your child has limited mobility or is in a wheelchair, scope out your trick-or-treat route ahead of time so you can note non-accessible houses and avoid them.
Please let us know your own Halloween tips, tricks, and successes. We hope your Halloween is a good one.

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We've kept this short, because our thoughts are with those of you who are not thinking of Halloween at all, or who have had Halloween rescheduled, due to Hurricane Sandy. If this is you, please let us know how you are doing and how our readers can help out.

Monday, October 29, 2012

Conversations Between Autistic Self-Advocates and Autism Parents - Part 2

Self-Advocate Elizabeth (Ibby) Grace's blog Tiny Grace Notes is subtitled "Ask an Autistic," and that is exactly what people do -- solicit Autistic insights from her. We asked if we could republish a recent conversation Ibby had with Tina, an autism parent -- to show that these conversations do happen, that they can be fruitful, and in the hopes that more such exchanges will happen.

This is part 2 of 2. We recommend reading Part 1 first, for context.

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Tina writes:

I'll try to answer your questions. I'm glad you asked all these questions. I dont know how many I can answer but am trying to answer them. J likes pizza, it's the only thing he'll eat. He strips the cheese off, eats that first then licks the tomato sauce off then scrapes the soft doughy part with his teeth and leaves the outer crust and what's left of the underneath part of the pizza.

Let's see what else... Okay, I think he likes being with us, his family, me, my husband and his brother, although his brother is older by two and a half years (just turned 15) and they don't play or anything. J likes Sesame Street and I guess maybe Elmo.

But J is really unpredictable and is becoming more and more angry and violent. He hit his brother the other day in the face. We're all a little scared of him, to be honest. 
The school called us and asked what they should do when he runs out of the classroom, often screaming. He also hits himself. Did I mention that already?

He likes going down the slide at the playground. But mostly he wants to be alone or is angry and makes this kind of screaming noise.
I know he likes going outside because he smiles when I ask him. He doesn't smile that much any more. He doesn't like it when we tell him he has to do anything, like get dressed or brush his teeth. He lets me brush his teeth but if I try to get him to do it, he starts hitting.

I guess I feel sad all the time and hopeless. I'm just going to be honest with you, because I don't see how this is a good life for any human being. I mean no one would ask to be this way. No one would "choose" to be like this. I think he feels that way too. We try. We love him. We wish we could do more to help him. We wish we could communicate better with him. But it's exhausting and my husband and I both have to work, so he goes to this school and is in a classroom for Autistic kids. They say they are working on a goal of toilet training him. They've been working on that goal for awhile.
 Yeah. so I guess that's it.


I did read that thing you wrote about your friend. It's good he has you as a friend. But really, who would choose to live like that? In a group home, dependent on other people? So yeah, when people ask, well how autistic is he, I say, severely, because what else am I suppose to say? I mean I'm not going to say well he's in diapers and hits himself and gets violent and stuff.

Like I said, if there was a cure or a pill that he could take that let him have friends or be toilet trained or eat other foods or not be so angry I'd give it to him in a heart beat. I would. I don't think that make me a bad parent to want that for my son. I love him. I do. But I hate that he can't do so many things. I don't blame his "autism" or whatever, I don't even know what that means anymore. I just hate seeing him like this.

Tina
 


Ibby replies:
 

Dear Tina, 



There's more than one thing going on here. The first thing you asked about was labels like "severe" and "low-functioning," but then I think you were asking about other things like teaching, how to help him, and touching on feelings of hopelessness which are understandable especially since you are working so hard and he is smiling less now and acting more aggressive and unhappy than he was before. But he just recently started letting you know he was happy about going outside with you, so there is light...



One of the first things that just jumps off the page at me is that throughout all the pain and confusion and desperation (and maybe even depression, though I am not a clinician, but when you have clinical depression and you get help for it that is one piece of extra weight that can be lifted off your shoulders, and it might not be such a bad idea to check, just in case) you are a woman who loves her child very, very deeply.
 Love is the realest thing and it can be real in any kind of unreality or harshness or whatever. Love holds.


The weight of the world is crushing you like flat right now, I can hear that in your voice too -- but your love for your child leaps off the page in 3D relief. That is an uncrushable thing, invincible. It will keep you strong forever even if you don't know it. Harry Potter's mom doesn't really die, I really think she doesn't, and can Harry Potter be destroyed? No, not in any way. Why? His mother's love.



I want to talk about teaching before I talk about labels because although labels are super important and a great thing to talk about, and I am so glad you asked about them, the fact that teaching is not the same thing as curing (which is this fakey kind of lure they hold out to tantalize people), and that teaching really exists, and better teaching can happen -- I want to tell you about this sooner because of the weight on your shoulders. You don't have to wait for the "cure" (which is sadly likely to be more like prevention, and hence completely unlikely to be of any help to your family or anybody's family at all unless the prevention of families is considered helpful) for things to become easier and better in day to day situations.



J's teachers are, under the law, doing something called FBA-BIPs which mean Functional Behavior Analysis/Behavior Intervention Plans. If they are not, they need to be, because he is hurting himself and scaring you. If they are, they may need some help doing them well, because they are not working well right now.
 (Note to other people: If you are a person who has to write FBA-BIPs and there is nobody to help you, you can also write in to the question box and I will welcome you with open arms. Either I will find you help in your area or I will help you, but make sure I have a lot of lead time on your deadlines because chances are I will not have a fast turnaround and also the data collection I advise will also not be that fast.)


When someone has trouble communicating well, he or she is likely to "act out" the message -- like in charades. Imagine you have walked into town to get a can of petrol or gasoline in a country whose language you don't speak while your husband waits at the side of the road with the broken down car. You suddenly notice they don't use gas pumps there. WTF? How are you going to get this across, what charade can you even do? You begin to panic -- wait, all you have is two US dollars ... Now imagine this is your whole life. A good analysis of the function (or, as I prefer "meaning") of a "behavior" works to get to a translation of what the person would rather be saying instead of doing that, if only he or she could. Another way of thinking about this that helps some people is, what would it take for me to do that? A good behavior analyst doing a FBA seriously needs to ask the kid's mother as part of the data collection consideration array, because who can interpret better?



So here is what it should look like: There are a list of things that are really important that would make J's life much better if the world knew what J was trying to say when he does that. The teacher or consultant who is doing the FBA (with your help, or asking you to also do one) is marking down times when these things happen, with details, to get a feeling for all the surrounding events before, during, after. A pattern should emerge, so everyone really knows what might contribute to making the "statement" occur. 



The BIP is the part where it is called a Behavior Intervention Plan. Traditionally, this can be a token economy (bribery) etc., but shockingly, this doesn't always work the best with Autistics because they might not get the point. What does work is getting them to buy into it for real so that they get the point and are on your team because they get that you are on their team. They see that their life will suck less when they have a better way of being understood, because you have helped design one, and lo and behold! It actually does work a lot better.

So say like the FBA shows a pattern that J gets aggressive and loudly hits himself when he needs a break from people getting in his face making demands. The new way he can learn, as an example, but this is one I teach a lot of, is to make the "hands up" gesture between his shoulders and ears that almost everyone can read as "Hey, man, can you please back off for a sec?" and when he sees how everyone backs up for a sec instead of having a giant panic attack he will notice that the gesture is a better lifestyle than the aggression, because the aggression really seriously just causes a bunch more noise whereas the gesture makes people step off, so hence it is truly a better solution to the "people in your face" issue. Does that make sense? It is really, honestly a real improvement in his real life. He can learn it because there is a point to it.

If everything on his FBA/BIP has this feature I am seriously serious that it will have more of a success rate because he will see the reason and have a purpose for being motivated. This is slightly different from traditional behaviorism because it takes his agency as a human with wishes and desires into account, rather than thinking of him mechanistically as like a behavior-machine, so you may have to explain it to the people working with him at some length, or print this and take it to them, just so they see that one secret twist that may have differed from their training and education that makes the whole thing work better (and by the way it also makes it more morally decent, but that is another story).


Also from liking to be outside and running and going down the slide, he might love the feeling of wind on his ears. I love this feeling. He might love it if he is on the front of a ferry or riding a bike or running track or in the car with the window open. If he gets a lot of this feeling in life he might smile a lot, especially if he knows a way to get it on purpose other than running screaming from the room (which I do not know if that is why he does that... it might be the people in your face issue ... you can tell when you track when and where he does it ... it might be both). People do learn to communicate more and more in ways that work better when they find out it works better. Nothing succeeds like success.

I think there might be a positive feedback loop situation when he learns some better forms of communicating at school and then hence also you yourself get happier and less stressed. In my imagination because you love him so much he is probably also aware of your mood and wishes you felt better but doesn't know how to communicate that. This is not like me trying to blame you for how you feel but just to let you know that J cares about you and when he sees you getting happier if he puts 2 and 2 together with that he will also get happier and that will just be another motivator for him. I think he loves it when you brush his teeth because that is you touching him and he just loves being near you. Maybe if you put his toothbrush there on the sink and brush your own teeth there too and he can copy you parallel in quiet he might like that, like a ritual you can do together. Could be worth a try.

Think about J's smile and think about how totally real and happy it is and pure, when he is happy. I don't think he is going around thinking about being dependent that much, just guessing, especially not on you, because that is just him being with you. Speaking of the concept of independence, and how it is a concept that not everyone has that much of a priority about, I want to talk about Eric, so.

Let me talk about Eric for a minute and then get to labels in general. I knew Eric when I was in grad school and at the time I considered him to be happier than me because he was laid back and doing his thing whereas I was trying to negotiate all these situations where I did not fit in and had no idea how to act. In a lot of ways I was bugging out and that is why I went to see him so often because his happy mellow beach dude energy was extremely relaxing. Then I got into this living situation where I did not have my own transportation and could not visit him whenever I wanted and I was seriously ultra bugging out, and it was a nightmare and my anxiety increased a lot. There were no situations where I could just seriously just BE and know that the person I was being with would completely understand the concept of doing that, of doing, well, nothing. I do have a friend like that in Seattle but Eric was it in my grad school. There's trade offs like he has these noisy roommates whatever but the state pays his rent and he lives AT THE BEACH I mean he is this beach guy with a pretend job and the economy allows him to live at the beach in Southern California, and he just walks away from his roommates, because it really never rains there, so why be inside? Yeah Eric knows what he's doing, he chooses.

Which brings me to labels. The reason I am not in love with them is because they are so context-driven. Eric is probably considered "low-functioning" because he has a fake job and lives in a group home and hardly talks and can't write but during that time period when I lost touch with him I had, because of my "high-functioning" lifestyle, an anxiety attack so bad I thought it was a cardiac issue and was admitted to ER because my blood pressure got so high (my resting blood pressure is on the low side). Everything was becoming absolutely terrifying. Slightly later, I was in horrific pain because I needed surgery, but I did not realize that the pain indicated a need for surgery. It was just something I didn't like. This lasted for some time. At some point my mother noticed on the phone that there was something wrong with me and told me to come home so she could check out what was going on. I did, and apparently it turned out to be a life-threatening situation that was also apparently kind of obvious, but again, with my time agnosia and various "spacey" aspects, I overlooked the danger. Fortunately, my mother was there to get it taken care of, and I lived. Long live Moms. :)

So now by the grace of God I am happily married and hence if I were to need life-saving surgery, my wife, who is a nurse, as is my mother, would notice this detail. They sort of gang up on me. :D. So, but also, if Eric and I were on the beach itself instead of on the cliff, and high tide were rolling in, and we were on the wrong type of sand bar, he was the one who had it together to know that, not me. No matter how much of a professor I am now and he lives in a group home and I am writing and he is probably thinking about the waves and smiling for no apparent reason, even though there is a reason, since he is thinking about the waves, which are smile-worthy, he is the one that has it together to know how not to drown, not me. So that is kind of what I am talking about, about context. I could be drowning, and Eric could be saving my life. Is he low-functioning and I'm high-functioning then? Just because when he and I both smile for "no reason" I am the one who can answer you when you ask me why?

But I understand that you need a thing to say. I get that there is some kind of difference, and also that it is important to be able to talk to people, and not have it take seventeen hours of TMI. That is logical and I do know what you mean. Also I get that I feel a real kinship with Eric, if you saw us together, we wouldn't seem that different, and if I could meet your son we would probably be able to relate at some type of interesting level. You would be like, huh. I am not sure why this is, but it has been happening for years. First I want to suggest a thing to say and then why I like it and then why I don't like the others and then talk about Pascal's Wager as a reason to be careful and use the thing I like which is value-neutral.

Here is the thing I like, which is value neutral. I got it from Shannon Des Roches Rosa, who wrote it about her son: she said he has "high-octane autism." That just really appealed to me because you get the point that it is a big deal, but it doesn't sound like such a bad thing. It kind of sounds, you know, race-car-ish. In fact, it might even be a little on the awesome side, if her son were to overhear. On the other hand, it's not like other listeners wouldn't get the point, you get the point, high-octane. Not wimpy. Serious.

So apart from the "severe" and "low" and "high" labels being inaccurate sometimes because they change during context changes, I also don't love that they reduce people to "functioning" like a human is a human doing rather than a human being. We are meant to BE. That is what makes us worthy, not high or low. But the A Number One thing I dislike is that people might overhear and feel heinous about themselves. This has happened to a lot of people I know, and it is just not worth it.

Sometimes it seems like No Way Can He Hear And Understand Anything. Or maybe you didn't think that but some doctor or speech pathologist or psychologist or psychiatrist told it to you for an alleged fact, and you were like, well, guess they are the Expert. But I don't think the risk is worth it.

So my way of thinking about this is based on an idea made up by philosopher and mathematician Blaise Pascal called Pascal's Wager to see if it would be a good idea to believe in God. Basically it is that you picture all four scenarios, and here it is filled out for positive and negative language and the kid understanding you or not, with the outcomes:


To me (and also to Pascal, which was his argument on why we should believe in God) even though the two situations on the far right have nothing happening, and that's 50% of the likelihood, it's just not worth it to go there because the lower left is so much worse than the upper left that you are kind of forced by reason to choose to believe (or at least kind of act like you believe, or hope anyway) in the conditions of the upper left, being "Kid understands words" mixed with "You say Positive stuff." Remember, many people who can write did not learn how to write until later in life and to this day are what I am going to call High Octane :)

Does that make sense or help at all? Now to me, I think High Octane is the perfect solution because it totally sounds positive to me or a kid, nothing wrong with it, my awesome car takes High Octane, but at the same time, the listener can totally tell you are not talking about some wimpy situation of a nerdy professor such as the writer of this blog, even though the writer of this blog may drown or get hit by a car or not understand the need for surgery or whatever it may be ;).

Tina, thanks for your patience. I hope I was able to help on the FBA/BIP stuff. It should really work fast if you run it by the teachers, the violent running yelling hitting stuff should get toned way down when he is understood, especially if you help them. The toileting is different and I will need to look into that some more because making that matter to someone when it doesn't yet is a whole new kettle of fish so I want to open that up to other folks who may have had success, and also I will ask around. Anyone?

(Most of all, seriously remember Love Prevails and J loves you and the whole family.)

All the best,

Ib



A version of this post was previously published at www.tinygracenotes.com.

Friday, October 26, 2012

Conversations Between Autistic Self-Advocates and Autism Parents - Part 1

Self-Advocate Elizabeth (Ibby) Grace's blog Tiny Grace Notes is subtitled "Ask an Autistic," and that is exactly what people do -- solicit Autistic insights from her. We asked if we could republish a recent conversation Ibby had with Tina, an autism parent -- to show that these conversations do happen, that they can be fruitful, and in the hopes that more such exchanges will happen.

This is part 1 of 2.

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Tina:

I have a question. I have a severely disabled son. He is nonverbal, is still in diapers, has self harming behaviors, hits himself in the face repeatedly and eats with his hands. I doubt he will ever progress to the point of living independently. I just can't imagine that ever happening as he's already 12 years old and only in the last year has he indicated that he understands what I mean when I ask him if he wants to go outside for some fresh air.

I get really tired of people saying how labels are bad. I mean when anyone sees him they get how tough it is and they use words like severe and low functioning, and they're right to, because he is. I don't see how that's a bad thing, it's an honest thing, from my perspective. Also people who seem so dead set against labeling are either able to write down their views (something my son cannot do) or they are parents of kids who are much farther along than my son. Truthfully I don't really care about the labels, but I do feel upset when people make such a big deal about labels, when it's really clear the severe label isn't one that fits them.

Also I'd like to see something that would make him able to go to the bathroom and not have to wear a diaper, use a utensil to eat his food and speak. If that's a cure, then I'll take it, if it's something else, great I'll take that. But I'm sick of everyone arguing about this stuff when they can WRITE and TALK!

You seem like a reasonable person. I'd love your views on all this. Thanks.

Ibby:

Thank you for the compliment of saying I seem like a reasonable person :)

Your question is interesting and very current right now. It is something I am indeed ready to talk more about and would like to think about some more. But before I do that, it is important for me to make it fit better with your family by knowing more pertinent details about your son, if you don't mind my asking. You will notice I almost always ask to know people better because I don't think what they cannot do gives me a good enough mental picture, enough to hold onto in my mind to feel like it is really possible for me to be able to talk about a person.

So your son, what does he love? What are some things that really seem to interest him or hold his attention? Another thing that I found really fascinating is that he recently started indicating that he knows what you mean when you ask him if he wants to go outside for some fresh air. How does he indicate this? And is the answer usually yes, or no? Are there other things he indicates to you? Are there things he can't stand? Things you can predict he would gravitate toward? I would just love to hear more about him, whatever you can think of that you don't mind telling me.

Then I will honestly tell you my thoughts on labels. And I do appreciate you taking the time to ask me about them even though I am a person who can write, and has written this:

http://www.tinygracenotes.com/2012/10/a-person-is-not-function.html

So I will do my very best to answer well and in a balanced and nuanced way.



A version of this post was previously published at http://www.tinygracenotes.com. The second part of this conversation will be published on Monday, October 29th.

Wednesday, October 24, 2012

Understanding Autism Acceptance: A Parent's Perspective

Shannon Des Roches Rosa 
www.squidalicious.com

Sometimes I think I like sameness more than my son does. That's why a persistent hindrance to increased independence for autistic kids like my son Leo is parents like me overlooking opportunities for self-care and competence. Sometimes this happens because we find it quicker and easier to take care of breakfast preparation or our kids' tooth brushing ourselves, sometimes because in our day-to-day rush we forget to check in and see if new skills have emerged. It takes effort and vigilance to give Leo the chances he needs to demonstrate competence.

Like this past weekend, when Leo asked me for mango juice. I was about to pour it for him, but instead stepped back and asked if he wanted to pour it himself. Which he did! He even put the lid back on the carton (a twisting/screwing motion) with one hand while drinking his juice with the other. That's some serious bilateral coordination. Which I would have missed, had I not slowed down and handed over the reins.

I consider scenarios like this part of Autism Acceptance: being able to appreciate that it is totally fucking awesome for my nearly-12-year-old son to pour his own juice, without any bittersweet undertones. This is not denying Leo's reality, or mine, or the challenges of being an imperfect parent to a child who needs and deserves the best parenting possible. This is understanding what autism means for Leo, and adjusting to his natural patterns of rhythm and growth -- patterns which have nothing to do with most kids his age, but which are far from rare either currently or historically.

Part of the difficulty many people have with Autism Acceptance is understanding why it is not an attitude of surrender or denial, to which I can only respond with our own experiences:

I'm not only constantly vigilant about Leo's competence -- supporting and encouraging him to do his best -- but also his safety. When he's excited or upset, he likes to whoop and gallop away from me and doesn't always notice dangers in his vicinity. Dude, I'm on that -- who wouldn't be? When we're out in public, we're a hand-holding duo; if he's in an excitable mood, we stay home and he can gallop all he wants. Sometimes outings I thought would be successes are cut short. It happens. I accept that.

I'm constantly vigilant about his education and needs -- we're re-evaluating his ABA home program now that our state has mandated insurance coverage, and also pushing for an AAC evaluation. We're re-gauging his reading readiness. We've just finished setting up a special needs trust with the understanding that Leo's long-term educational and living needs will likely be different than many -- but not all -- people his age. While all of these things also require our effort and vigilance, none of them are tragedies -- they are Leo's realities. I accept them.

The most important part of Autism Acceptance for me, however, is understanding that Leo is not an empty shell, or a changeling. There is not some alternate Leo trapped inside his body, waiting to escape. Leo is here, right in front of me. Leo is Leo. He is the person he was born to be. He is his own awesome self.  

I accept and adore Leo just as he is.



A version of this essay was published at www.squidalicious.com.

Monday, October 22, 2012

The Last Place to Take Your Autistic Children

....if you want them to have high self-esteem or learn about autism.

Karla Fisher
Karla's ASD Page

This past week has been nothing short of amazing in the world of cognitive dissonance. At work, I was honored by being offered a key position in a critical program at one of the largest high tech companies in the world. I had worn my favorite black hoodie to my job interview. On the day I received my official offer letter, I received handshakes, congratulations, and assurance from my boss and other leaders that this is a great honor and opportunity.

I rest knowing that I am amongst the top in the world at the work that I do, and brace to continue towards being even better. I am proud of this work that makes such a contribution to the world at large. This is a world where I am accepted and valued, and it is good.

In the past few weeks, however, I have been taking vacation time to attend Autism related conferences in an effort to expand my knowledge of the “autism profession.” This is a world that is uncomfortable for me at best and downright hostile at worst. Don’t get me wrong. I realize that these professionals are trying to do well. I know they have good intentions. But just after my promotion, I was literally brought to tears in one of the events. This is amazing because I am so strong. I fear today for those who are not so strong.

At this latest conference, I went to a session by Tony Attwood that was particularly hurtful to me. I do not know if it was because it was the last of many, but I think that doesn’t matter. Suffice it to say that all of them had elements of this session. Attwood’s session began well, with his talking about ASD versus NT [neurotypical] as a culture. I was happy to hear this opening. I had some influence on this perspective, as I had discussed this with Attwood privately in email and through clinicians that he works with.

From there, however, the cultural perspective thing sort of went downhill. Attwood was dynamic, quick, fluid, and exceedingly witty. Humor was his main way of reaching his audience and he delivered well judging by the audience, which was laughing several times each minute. He was very good overall as a speaker. The problem was that he used humor about autistic people primarily, and he spoke only to the NTs in the audience despite the fact that he knew autistic people were also there.

Think about going to a conference on “Women’s Culture.” Then think that you showed up and 90% of the audience is male and the speaker is male. The speaker opens up with kind words but then spends the rest of the day discussion the limitations of women and how women feel ... from his male perspective. Think about how creepy that might feel.

In his session, Autistic people were plainly mocked. Attwood talked about how he knows when a mother or father of a child is autistic when he delivers the autism diagnosis for their child. He said, “I have a good picture of how it looks when an NT mother hears this message.” Then he goes on to say that he knows the parent is autistic when he sees the following: he stiffens his body up then and puts on his robot voice and he says, “Okay, so let me see if I got this. I need to see about OT, ABA, understand about sensory integration...”

As he is going through this I am thinking to myself, “Yes, this is the good way to approach the information now that there is a diagnosis. Facts will help the child, and this person was seeking facts.” But my thoughts are disrupted by an audience that is in full belly laughter at Attwood’s imitation of an autistic person. My heart grew heavy as I realized that these people were supposed to understand and accept me and make my life better.

If Attwood really wanted to be funny and talk about respecting cultures, he could have pulled it off if he made fun of both equally. He should not have spoken as if everyone in the audience was NT, and only explain how autistic parents might react. Alas he did not do that; most of the day was spent with me missing pieces of the discussions about NTs -- because Attwood did not explain them. When he spoke about autistics, however, he imitated how the ASD person thought. I would think “Yes, that is how I also feel” while the entire room full of parents and professionals were laughing at me.

The goodness of my new position and all accolades from my coworkers and friends was completely lost in the moments that the room burst into laughter.  Ironically, this also happened when Attwood made fun of the “ASD uniform” -- the one I was clearly wearing.

It was the same black hoodie that I wore earlier in the week, when I was interviewed and promoted.



A version of this essay, and this image, were previously published on Karla's ASD page.

TPGA acquisitions editor: Rob Gross

Wednesday, October 17, 2012

Autism and Self-Injurious Behaviors

Bridget Allen
ItsBridgetsWord.wordpress.com

Self Injurious Behaviors. The magic trump card to stop down any conversation about autism. Three words loaded with emotion for anyone who loves an autistic. You want to protect the ones you love. In this case, the one you love and want to protect is also the very same person who is hurting the one you love and want to protect. It's heartbreaking and confusing. I get that. I promise.

Self injurious behaviors (SIBs) are often cited by those who view autism as a tragedy. Their child's autism causes him to engage in SIBs, and they would do anything to make the autism that causes their child to hurt himself for no apparent reason to go away.

Personally, I have been told I am "so high functioning" I cannot possibly understand, but I do understand because I am an autistic who engages in self injurious behaviors. I'm a head-banging, skin-biting, hair-pulling, mystery-bruise-getting autistic. I see SIBs from the inside out -- and while I can't vouch for other autistics, for me the awful part of SIBs is seeing the pain it causes those who care about me. This hurts more than any physical pain. It even hurts more than the root causes that drive me to SIB in the first place.

Self injurious behaviors are not the same as self harm. I feel self harm is a much more concerning issue than SIBs because it encompasses emotional torment  (although there is overlap of self harm and SIBs in some cases). If you or someone you care about is involved in self harm, I urge you to seek help.

That said, I encountered years of professionals wanting to equate my SIB to self esteem issues, chiefly because of preconceived notions related to my gender. I have my frailties. I am overly sensitive and internalize criticism. I have PTSD related body image issues. My baggage has outgrown its suitcase and demanded a steamer trunk, but it's my baggage. I own it, I examine it, and I deal with it on a daily basis. My SIBs predate my baggage and will be around should I ever manage to leave that Trunk of Very Bad Things by the side of the road.

On a small scale, my SIBs are not that big a deal. I bite my fingers while trying to process phone calls. Under the table, my nails dig into my leg during a meeting. The actions are discreet, but it took me until my late teens to get my head around the concept that open self regulation via SIBs only left me more vulnerable to those who did not have my best interests at heart. These acts are not a lack of control. I am exerting some small control over my surroundings. Often, I can't avoid an overstimulating environment. Processing auditory input is difficult for me under the best circumstances. Throw in multiple voices, ambient noise, and fluorescent lights, and it becomes near impossible. Pain works as a filter. Enough pain, and the ambient noise dulls to a roar so that I may at least fake my way through a conversation without tears. These are minor acts that may result in a bruise or a little blood, but no real damage.

Most self injurious behavior stems from what I think of as forced passing attempts. This is a bit of a misnomer because I'm openly autistic, not passing as neurotypical. It's commonplace for even friendly environments to be sensory land mines, and for people who think they are sensitive to my needs to be miles off target. The world is full of occasions that feel like assaults. Sometimes willful, often inadvertent, and rarely within my verbal ability to act upon in real time, there are demands that I Fit In, Play Along, be a Good Sport, and not be Unreasonable. However, the inconvenient nature of my needs does not make them disappear. Those occasions damage me, chipping away at what is already paper thin defenses until there is nothing left.

Then I break, and the self injury gets ugly.

I take care of others. I try to take care of myself, but in reality, particularly as a parent, there are times when my needs go out the window. I schedule downtime, but life ignores my schedule. I have too many people whose needs must be met at once. I need to maintain composure and stay strong, but with no time to recharge, I become too agitated to properly self regulate. I fall into scripted speech that parrots verbatim criticism and verbal abuse from my past. These aren't my thoughts, but echolalia voicing my disgust as I hit my head over and over until everything stops. Self injurious behavior during a meltdown always seems to start with the delusion that I'm actually circumventing a meltdown. (I even have the words "Prevent Meltdown" written in my notes.) During, I know this is bad, really, really bad I know for days I will pay in headaches and neck problems, but there is no amount of will power that can stop it from happening.

The best support you can provide to someone with self injurious behaviors is an open mind. Don't dismiss possible triggers. If someone communicates to you that an environment or activity is overwhelming, even if that communication is not speech, pay attention to them. Plan ahead. Do not put the ability to handle an event or environment into a success or failure framework, because when you care about someone, you will put yourself in harm's way to not fail them. Remember that what may seem trivial to you, might be painful to someone else. Adapt to their needs, adjust your perspective, and accept them as they are.

Monday, October 15, 2012

Understanding Autism Acceptance

Amy Sequenzia

Accepting an autistic child does not mean ignoring the challenges that may be part of autism.

A parent does not need to pretend that it is not hard to deal with those challenges to be accepting.

Accepting autism and an autistic child is about stop mourning a child that does not exist and find the awesomeness on the autistic child in front of you.

First, please read Jim Sinclair’s essay Don’t Mourn For Us. Second, I am not saying that some parents don’t love their children. What I am saying is that acceptance is about the child, or autistic adult, and their self-image.

Parents cannot say they accept their autistic children if they demonize autism.

I remember how it felt when my mother blamed autism for the way I did things. I felt like I was not as good as the other kids, I felt people did not like me the way they liked the other kids.

If a person says “I accept you but I hate that you can’t speak,” the child only hears, “I hate who you are.” For us non-speaking autistics, the ability to speak is unknown, so we don’t feel like we need to be fixed. When there is too much “Oh, I wish you could talk,” we believe we are wrong, we start seeing ourselves as less.

That does not mean we don’t want to communicate. We do, and there are other ways besides speaking.

Autism is about neurology, and that’s who we are.

G.I. issues are not exclusively an autism issue and I don’t know of anyone who proposes not addressing it. One can be fighting, even hating, this problem, and still be accepting of autism as a different way of processing emotions, feelings and the world.

Sensory issues can be debilitating, but nobody is giving up on trying to figure out ways of improving the coping mechanisms (stimming can be helpful).

Acceptance is about seeing such differences and how the environment can affect us. And it is about understanding and making accommodations, instead of saying we are too broken to participate in the community; instead of making us feel ashamed of who we are. We react to outside stimuli because that’s who we are. Acceptance can make accommodations a trivial thing (at least I hope so).

Some autistics can become aggressive towards others or engage on self-injurious behavior. This needs to be addressed and there are different approaches to it. Understanding is also needed because these behaviors are also a reaction to something. Acceptance means that we will be told that this is not appropriate, that therapies might be necessary, but that it does not erase all the qualities we all have.

Not toilet trained? You would be surprised by the number of independent adults with bathroom issues.

Acceptance is about recognizing that an autistic person is, and will always be, different but not less -- even as some challenges are addressed.

Accepting an autistic person is accepting the autism as part of that person. Challenges can and should be dealt with, but the neurology, how we see the world is unique and should be celebrated.

Ultimately, acceptance means acknowledging that the way the neurotypical world sees and reacts autism can be harder on the child (or autistic adults) than on the parents. It is about helping us with our self-esteem, our love for who we are. It is about stopping mourning for us and starting helping us to show the world that we are not broken. The world does not need to love us. It needs to accept us so we can thrive, in our own way. And parents can be our allies to show the world how.

Friday, October 12, 2012

'Head-Banging' Is About as Funny as 'Retard'

Kristina Chew
autism.typepad.com

Kristina blogs about parenting her teenage son Charlie at the URL above. This post was one of Kristina's recent daily dispatches.

We just got through one of those begins-with-whacking-the-corner-of-the-iPad on the bedroom wall storms, though several degrees less bad than the one Charlie had the night before he went back to school, almost exactly a month ago. He called and called for his iPad after things were over but (powdery with plaster dust from the wall), the iPad remains on the brown chair: As we told Charlie, he needs to sleep first then he can have it.

It is past 2am and I want to take one fast glance at some things pertaining to Herodotus but I just wanted to say something I've had on my mind for years:

I really get all-out annoyed when people make references to head-banging and head-bangers and head-smack-on-desk and that sort of thing, in a heavy metal sort of way, in a haha funny black humor! aren't I being so risqué way.

Charlie started banging his head / hitting it with his hand when he was a toddler for reasons that, with this late hour and Herodotus in mind, I will not delve further into at the moment. We've been through helmets, as well as helmet-caused impetigo on the head. I keep forehead-sized bandaids and neosporin in the car because you never know.

Charlie doesn't need those tonight, fortunately.



A version of this post was previously published at autism.typepad.com.

Wednesday, October 10, 2012

How To Address Parental Fears About Autism

Brenda Rothman
mamabegood.blogspot.com

Parents of autistic children are exposed to fears about their children way too early and too often. We hear fears about cognitive ability, fitting in, relationships, bullying, adulthood, job opportunities, independence, financial support, catching up. What we read on the internet scares us. What we read in the paper scares us. What service providers, teachers, and well-meaning people tell us scares us.

Sometimes we get stuck in fear and we can't find a way out. Our brains are wired to produce more connections to the areas we use more. So the more time we spend stuck in fear around our children and their futures, the more connections we build, the stronger those areas become. We build more neural roads between our synapses of autism and fear. We get stuck on those roads.

Autistic children and adults have valid and genuine challenges. And parents need to address those.  But we cannot solve all the future challenges that may happen ... or may not happen. If we spend our energy worrying about all those possibilities, we lose the energy and creativity to solve the problems of right now.

How do we move away from those fears?

1. Is it happening right now?
This thing that I'm worrying about for my child, is it occurring today? Or is it something I'm afraid of for the future? Is it about whether they'll be able to live independently, how they'll financially support themselves, what kind of job they'll have, whether they'll be able to hold a job, whether they'll be bullied, whether they'll have friends or important relationships, where they'll live, whether they'll be happy? All those things are in the future. We can imagine all sorts of scenarios. We can work on those stories for hours. But they are pure fiction. If it's not happening right now, it's just a story, a story that hurts.

If it is something happening right now, congratulations. You can do something right now. Work on a balancing exercise so that fear doesn't grip you. Talk to other people to vent your feelings. Seek advice for this specific challenge. Find out if it's a real concern or if an adjustment to our understanding of autism is needed. Create a plan, listen to other explanations, and take some steps.

2. Is the thing we're worried about certain to happen?

If our fears are about the future, can we know with certainty that they will happen? It might happen.  It might not. Can we know for sure? We can't. So what does it mean that we're using our precious time and energy on them right now? How do those stories make us feel? Does that make us more empowered or less?

3. Do you have any support, any happiness right now?

Right now, where you are, the way you are, the way your child is, take a minute to think about you, about your environment. Do you have things you're taking for granted? Do you have blessings surrounding you right now? Do you have family, friends, teachers supporting you and your child? Do you have the basics to sustain life? Do you have the beauty of nature, connections to people, the feeling of love? Really think about these things. Feel the supports. Acknowledge the blessings. They aren't meaningless affirmations. Appreciating what we have right now, in our hands, under our feet, right in front of us, is doing the hard work, the necessary work, of providing for ourselves and our children. Being our own best friend and modeling perspective is critical.

4. Can I be here, present and available, for my child when I'm worried about the future?

Your children need your attention right now. They can't tell you what the future will hold. You can't know. No one knows. But what we do know is that you have limited time and energy, your child has limited time and energy, for this day right here and now. Use what you have to focus on what your child needs now, what you need now. Use your energies to create moments of joy right now.  This moment is your first priority.

6. Will my child's life be sad if I don't worry about these problems now?

Ah, so there's the real fear. "I'm afraid that my child's life will be sad." Will it? That's the kind of thought that we need to sit with and reflect upon.

7. Are those kinds of people -- autistic persons -- sad?

What we're really thinking then is "disabled people like that have sad lives." "Autistic people like that are sad people." Are those scenes that we're imagining for our child making us feel sad? Do we think our child will have a sad life?

Okay, let's start there. Do all disabled people have sad lives? Are autistic people sad people? Do you really think that? Are they? Every last one of them? Autistic people are people first. Just like you and me. I've had some tough situations, but I'm not sad. Lots of people have challenges, genuine challenges, and they aren't leading sad lives. Autistic people are people. They come in all shapes and sizes. They aren't all sad. Some of them might be. Some might be happy. Some might have moments of sadness. But if you really think all autistic people are sad, let's go meet some. And listen some more.  Some of them are downright bouncy.

So maybe you think only certain autistic people are sad because they're non-verbal, unemployed, living with parents, in a group home, don't have a job, or have a part-time or low-income job? Do you think that's sad? Why? Do you think it's possible they could be all those things and be happy? Is it possible those could actually be good things? Like never having to pay rent? Never having to answer a boss? Not having so much clutter? Being free from a high-stress lifestyle? Having lots of time to devote to outside interests? I mean, it's different from what you experienced, but is it a given that it's sad? 

What if instead you thought autistics' lives are happy? Would you be better able to help your child?  Would you be focusing on the things that make him happy? Would he have a foundation of happiness to build the rest of his life on? Would that help you be a better parent?

8. Who is your child right now?

Let's really look at them right now. They're a kid. In the midst of childhood and all those playful, messy moments of childhood. They love their family. They love their pets. They get lost in the things they enjoy, like no one else can. They are supported by many people. They don't care about conforming to narrow minds. They are real mischief-makers. They're really, really good at being themselves. They are happy.

Conclusion

Part of the culture around autism is that we parents should worry about our children.  If we want to  be responsible autism parents, then we have to take all the fearful possibilities into account. That's our job. And if we're not afraid of the future, we're avoiding the reality of autism. I'd like you to question that assumption. I'd like you to notice what's in front of you right now, to uncover the root beliefs that cause us fear, and to see the joy that's available to us.



A version of this essay was previously published at mamabegood.blogspot.com.

Monday, October 8, 2012

TPGA's Position on Autism Organizations That Support Autistic People

Our editorial team frequently discusses our expectations for autism organizations, both internally and during outreach efforts. We thought it time to formalize those expectations here on our site, as a resource for like-minded individuals.

-The Editors



At Thinking Person's Guide to Autism, we believe organizations that support autistic people must adhere to the following five principles:
  1. Support, not cure: autism is a naturally occurring human neurological variation and not a disease process to be cured. Medical or health issues that may accompany autism should be addressed independently.
  2. Evidence-based medical and clinical interventions: from our inception, we have advocated for helping autistic individuals in ways that are based on peer-reviewed empirical studies and which have been deemed effective by the wider scientific and academic communities.
  3. Inclusiveness: Autistic people must have significant, meaningful, and primary roles in all aspects of the organization, especially at board and executive levels with regards to planning and decision-making. Displaying autistic individuals in advertisements, or claiming to support autistic self-advocacy in cases where autistics have no power within the organization is manipulative and exploitive.
  4. Acceptance, not stigmatization: All aspects of the organization's financial cycle, from advertising and fundraising through grants and programs, must be driven by values of inclusion and acceptance of autistic people across the spectrum. Using fear or negative imagery to promote autism awareness degrades and isolates autistic people and their families.
  5. Advocacy for the human and civil rights of all autistic people: Clear positions must be publically expressed on issues that affect the well being of autistic individuals. Such issues include the use of physical and chemical restraints; the lack of full inclusion in education, work, and housing; and funding for programs that address the immediate needs of autistic people in their communities.

Friday, October 5, 2012

A Person Is Not A Function

Elizabeth J. Grace
www.tinygracenotes.com

I haven't seen my friend Eric in years, and we are not in touch right now because our friendship, our communion, is about hanging out together. He's not much of a talker at all, maybe ten words? and not a writer. (And even if he were a talker, I am heinous on the phone.) Next time I am in his town, and we see each other, it will still be easy to hang out with each other as if we just left off, because we both love to sit in our sea cliff hangout hidden by sea grass and watch the ocean. We like to do this quietly.

Eric is on the ball and understands what people are saying and doing.  I and some others find this obvious, but not everybody does. For one thing, he knows your name if he likes you, and if he doesn't, he will seem never to have met you, over and over. If you are a loud face-talker who says things like Look At My Eyes, he will never openly know your name. If you touch him without his permission, which a shocking number of people feel free to do, he won't even look at your mouth out of the corner of his eyes ever again. Your name is mud to him, but if someone he likes asks whether you, the toucher-without-permission, are a complete jackwagon, he will very slightly smirk instead of raging, and it is really, really funny and awesome how quickly he can contain himself.

If he likes you, he will know your name, and say it, even after years. He says it like you are a really amazing thing, since it is one of the few things he feels like saying. He can tell who you are by that quick glance at your mouth out of the corner of his eye. He will also say yes or no, if he feels like it, but he'd rather say yes he wants to go to the beach by action, or invite you by getting going but leading with his head and stopping after a couple steps to make sure you get the hint of what is happening. I know this because after two years of not seeing him I ran into him in the grocery store where he called my name before I saw him and we both dropped whatever our other plans were at his silent but clear and familiar suggestion and went to our spot in the bluffs.

When we are together there is no yimmer yammer. It is relaxing. I know I can go to him to get centered and real. Eric knows I am also not going to stop him in the middle of whatever he is doing because my agenda is more important or something, and then he will have to stop right there, walk backwards, and start all over again. This is the kind of thing people do whose names he does not decide to say. They do it a lot. Many people act like they don't think he understands anything, which seems odd to me. But now that I am online I see that a preponderance of people seem to believe that if you don't talk, you can't listen. Not the truth, but widely held.

I don't know how much Eric would or could talk if he thought talking were a worthwhile pastime, because that would be me yakking asking him a ton of stuff, which he would obviously find annoying and noisy. He maybe doesn't have it to self-advocate all the time in the large ways, like a job, but I know he has done it some, or made some of what is important to him known. Where he lives, for example, there really isn't a good job situation for people with disabilities, or even for people without, because, I'll just say it, he lives in California. We have all heard about California's financial woes.  Last I knew, he spent his days in this thing called a "day center" which is really kind of silly. But he does whatever they do there, comes home, goes to the beach. The group home where he lives has some people in it that are on the noisier side, not his favorite, but he lives within walking distance of the ocean in a place where the property values are really pretty out of control and it's a surprise that they even have group homes there.

If I still lived where Eric lives I could easily help figure out what kinds of jobs he would be good at and enjoy, not for hours and hours, because working too much would probably stress him out. Plus the whole people in his face making noise thing, and interrupting his processes: added stress. And if he wanted to, Eric could easily steal from me, or fake me out, or confuse me emotionally because I trust him so much, but I know he is not that kind of person, and I know for certain my trust is not misplaced. The reason I know all of these things and more is because we are friends and he can communicate by being himself instead of just by talking or writing. And I can listen by being with him and noticing who he is instead of by saying use your words and look in my eyes and press the picture pecs or whatever, and so can everyone else, but they just don't know how important that is, yet, probably because they can't relate to him or something. I don't know. But this “high” and “low” functioning talk that keeps happening all over the place over and over again which is supposed to separate us somehow is hurting my eyes and ears and feelings and so I have to write this.

Let me just put this out there: my world would be a whole lot quieter if I could get away with it. But it isn't, and I can't, because I will yimmer yammer 'til the cows come home as long as it isn't Eric's path to tell you that Eric is a person whose life is worth living. It's his friends' path, and he has other friends, and I am the one talking and writing now, because I can, which does not make me better than him or more of a person. It just gives me a slightly greater hope of being heard: Eric's life is worth living. And not only for Eric, but for a lot of other people, such as his friends, and people in the neighborhood who like seeing him go by.

A person is not a function. A person is a person.

Wednesday, October 3, 2012

Does Your Area Have Disability-Friendly Museum Days?

Shannon Des Roches Rosa  
www.squidalicious.com
  
Parallel exploration is a very reasonable
and comforting way to socialize
We're not a family that stays home. We're a family of excursioners. Still, there are places my eleven-year-old son adores yet which we avoid completely, because our usual techniques of "go early or go off season" can't guarantee him a good time.

One of those local places is the sensory and exploration wonderland known as the Children's Discovery Museum of San Jose -- there is no time in which it is not thronging with tiny shrieking moppets, and kids Leo's age are generally perceived as Too Big. Which is why I am so glad the CDM recently held their second after-hours Play Your Way event -- essentially a private party for Leo and his crew. As my co-editor Jen Myers wrote about the evening at Dandelion:
"It is an almost obstacle-free evening set up for Jack, and for his friends. The number of people invited to the museum was limited, which makes the space much easier to navigate with a wheelchair, and there is a lesser chance that Jack will drag his hands across another person when we are walking. The museum staff created quiet spaces for kids who needed some down time, and there were icons near each of the areas so parents could create a social story if that is their kid’s thing. The staff was expecting us, and our particular group of whoops and stims. Friendly, inviting, it was exactly how a kid’s museum should be."
Many of those modifications made a huge difference for Leo as well, especially the quiet areas/rooms in which Leo could grab and squeeze armful-sized bean bags and then loll about on faux-furry throw rugs when the excitement of Just Getting to Play YEAH! became overwhelming.

Here is what else made the Play Your Way event work for Leo, and so many of the other kids we observed:
1) Fewer people. Leo got to explore most exhibits immediately, without having to wait in line. And because he wasn't anxious about crowds and their overwhelming chaos & noise, he relaxed and started to experiment. He's the one who figured out how to blow semi-bubbles using this bubble juice trough:
2) Large-scale sensory fun. Leo has a personal push-pin box, it is one of his favorite toys ever. But look how much more fun it is to have an entire push-pin wall:
3) Being around people who get Leo. The Play Your Way event was strictly for children with disabilities and their families. That meant no one rushed Leo, no one pushed him to finish or just get through any of the exhibits so they could have their turn. Observe the following video of Leo playing with a water vortex. First he enjoys the feeling of the water,  then he steps back and just looks at the vortex for a few beats ... and then he starts experimenting with dropping in plastic balls. If he hadn't had the space to step back and think -- if he'd been surrounded by yippy impatient toddlers and their yappy hovering adults -- he probably wouldn't have moved on to his next phase of experimenting and exploration.

A whole ambulance all to
himself -- so fun when
sans emergency
(I also have to note that every time Leo went bounding into someone else's space, folks recognized that he did so out of pure exuberance, and were consistently kind and understanding. As we tried to be, when the reverse scenarios occurred.)
4) Getting to explore big vehicles! I don't know how you or your child feel about big vehicles, but Leo adores them. Getting to hang out and investigate a real fire truck, getting to lounge on the fainting-couch-like gurney in a real ambulance, well, that was a little slice of heaven for our boy.
Climbing at the Palo Alto
Junior Museum and Zoo
The Children's Discovery Museum is not the only local place that holds disability-friendly events. San Francisco's Exploratorium held an autism-friendly event in 2009, to help gauge how to make their new space more ASD-friendly. The Palo Alto Junior Museum and Zoo has opened its doors three times in the past year or so for disability-friendly Super Family Sundays. How great would it be to see events like these at Cal Academy or Monterey Bay Aquarium -- especially if they welcomed people with disabilities of all ages?

Does your area's museums or science centers have disability-friendly events? Have you gone? Do they work? What makes these events work (or not work) for you or your family?

Monday, October 1, 2012

How to Read Blogs About Parenting Autistic Children

Karla Fisher
Karla's ASD Page

I was a single autistic parent with 1 neurotypical and 1 ASD child to my care. I "get" how tough parenting can be. I remember many a night lying in bed weeping for the alone/helpless feeling that I had. I had no idea sometimes how I was going to physically survive.

My life was completely different after children. My "normal" was completely redefined. I could not keep relationships. I had no money. And yet through all of these tough times I never once had the urge to blame my children or anything about them for my broken relationships, my career failures or even my hard financial life. I had made the choices that got me and them into the tough spots that we were in and I had to make different choices to get us out.

And that is what I did, all the while not just paying lip service to loving my children and accepting them for who they were but demonstrating to them through my actions. I protected and guarded their unique beings and supported them throughout their lives and as they grew into mature, young women our language and roles changed.

Back in the early '90s I had a class at my job about leadership. I remember the teacher drawing a line and saying that the line was between "taking responsibility" and "being a victim." He stressed that we all have the choice of these two things for everything in life and that leaders take responsibility. I took that class to heart and have tried to live my life with his lesson in mind.

Today my girls and I are best friends. In fact we have always been best friends.

When you read blogs about parenting children, ask yourself if the author is taking responsibility or being a victim. If the latter, ask yourself if you really want to support/enable this behavior and this blog. Ask if reading this sort of language is helping you and your situation or hurting. Ask if you need to find other role models to help you move from being a victim to taking responsibility.